Your Federal Quarterly Tax Payments are due April 15th Get Help Now >>

How Do I Imput My Own Data on Form by pvt17390

VIEWS: 5 PAGES: 68

How Do I Imput My Own Data on Form document sample

More Info
									Disease

MS




MS
MS
MS




MS
MS




MS




MS

MS

MS




MS


MS


MS


MS
MS
MS
MS
MS
MS

MS
MS


MS

MS

MS

MS
MS


MS




MS




MS
MS
MS




MS




MS
MS
MS




MS

MS


MS
MS




MS


MS
MS
MS




MS




MS
MS


MS




MS


MS


MS


MS

MS


MS




MS




MS
MS
MS
MS

MS

MS
MS
MS


MS


MS




MS


MS
MS
MS
MS
MS
MS


MS




MS

MS
MS

MS
MS
MS
MS
MS
MS
MS
MS

MS

MS

MS
MS

MS




MS


MS
MS




MS
MS

MS




MS
Parkinson's

Parkinson's


Parkinson's




Parkinson's
Parkinson's
Parkinson's
Parkinson's




Parkinson's
Parkinson's
Parkinson's
Parkinson's

Parkinson's


Parkinson's
Parkinson's
Parkinson's
Parkinson's
Parkinson's

Parkinson's


Parkinson's




Parkinson's


Parkinson's


Parkinson's
Parkinson's
Parkinson's
Parkinson's


Parkinson's

Parkinson's




Parkinson's
Parkinson's




Parkinson's




Parkinson's
Parkinson's

Parkinson's




Parkinson's

Parkinson's

Parkinson's


Parkinson's


Parkinson's




Parkinson's
Parkinson's




Parkinson's
Parkinson's


Parkinson's
Parkinson's

Parkinson's

Parkinson's
Parkinson's

Parkinson's




Parkinson's

Parkinson's
Parkinson's

Parkinson's

Parkinson's


Parkinson's
Parkinson's

Parkinson's


Parkinson's
Parkinson's


Parkinson's
Parkinson's
Parkinson's

Parkinson's


Parkinson's




Parkinson's

Parkinson's
Parkinson's

Parkinson's




Parkinson's

Parkinson's


Parkinson's

Parkinson's
Parkinson's




Parkinson's




Parkinson's
Parkinson's
Parkinson's




Parkinson's


Parkinson's
Parkinson's
Parkinson's
Parkinson's




Parkinson's
Parkinson's


Parkinson's
Parkinson's
Parkinson's




Parkinson's


Parkinson's
Parkinson's




Parkinson's

Parkinson's
Parkinson's
Parkinson's
Parkinson's
Parkinson's
Parkinson's
Parkinson's




Parkinson's


Parkinson's
Parkinson's
Parkinson's


Parkinson's

Parkinson's


Parkinson's
Parkinson's
Parkinson's

Parkinson's
Parkinson's
Parkinson's




Parkinson's

Parkinson's

Parkinson's




Parkinson's
Parkinson's
Parkinson's

Parkinson's
Parkinson's
Parkinson's
Parkinson's

Parkinson's

Parkinson's




Parkinson's


Parkinson's


Parkinson's




Parkinson's


Parkinson's

Parkinson's
Parkinson's

Parkinson's
Parkinson's


Parkinson's

Parkinson's
Parkinson's




Parkinson's
Parkinson's
Parkinson's

Parkinson's

ALS

ALS
ALS




ALS

ALS

ALS
ALS




ALS
ALS
ALS
ALS

ALS

ALS
ALS
ALS

ALS

ALS
ALS
ALS
ALS


ALS

Fibromyalgia




Fibromyalgia
Fibromyalgia
Fibromyalgia
Fibromyalgia

Fibromyalgia
Fibromyalgia




Fibromyalgia
Fibromyalgia
Fibromyalgia

Fibromyalgia
Fibromyalgia


Fibromyalgia

Fibromyalgia

Fibromyalgia




Fibromyalgia


Fibromyalgia




Fibromyalgia
Fibromyalgia

Fibromyalgia

Fibromyalgia

Fibromyalgia


Fibromyalgia

Fibromyalgia

Fibromyalgia
Fibromyalgia




Fibromyalgia

Fibromyalgia


Fibromyalgia
Fibromyalgia

Fibromyalgia




Fibromyalgia
Fibromyalgia

Fibromyalgia

Fibromyalgia

Fibromyalgia


Fibromyalgia




Fibromyalgia




Fibromyalgia




Fibromyalgia




Fibromyalgia

Fibromyalgia
Fibromyalgia


Fibromyalgia
Fibromyalgia


Fibromyalgia
Fibromyalgia

Fibromyalgia

Fibromyalgia




Fibromyalgia

Fibromyalgia
Fibromyalgia


Fibromyalgia

Fibromyalgia


Fibromyalgia


Fibromyalgia




Fibromyalgia




Fibromyalgia

Fibromyalgia




Fibromyalgia

Fibromyalgia
Fibromyalgia
Fibromyalgia




Fibromyalgia

Fibromyalgia




Fibromyalgia
Fibromyalgia
Fibromyalgia


Fibromyalgia




Fibromyalgia




Fibromyalgia
Fibromyalgia
Fibromyalgia
Fibromyalgia


Fibromyalgia




Fibromyalgia

Fibromyalgia
Fibromyalgia




Fibromyalgia


Fibromyalgia


Fibromyalgia




Fibromyalgia

Fibromyalgia




Fibromyalgia

HIV
HIV


HIV
HIV
HIV

HIV
HIV
HIV




HIV




HIV




HIV

HIV

HIV
HIV

HIV
HIV




HIV

HIV


HIV




HIV
HIV
HIV
HIV




HIV
HIV
HIV

HIV
HIV
HIV
HIV

HIV

HIV

HIV
HIV

HIV




HIV

HIV




HIV

HIV


HIV
HIV
HIV




HIV

HIV

HIV

HIV
HIV


HIV
HIV




HIV

HIV

HIV
HIV
HIV
HIV
HIV

HIV
HIV

HIV
HIV
HIV




HIV

HIV




HIV
HIV




HIV
HIV

HIV
HIV

HIV
HIV
HIV


HIV
HIV

HIV


HIV
HIV
HIV




HIV
HIV
Mood
Mood
Mood

Mood

Mood
Mood




Mood
Mood
Mood
Mood
Mood
Mood

Mood




Mood


Mood
Mood

Mood

Mood




Mood

Mood
Mood
Mood

Mood


Mood
Mood

Mood

Mood
Mood




Mood

Mood
Mood

Mood
Mood


Mood
Mood
Mood
Mood




Mood

Mood

Mood




Mood




Mood

Mood
Mood

Mood
Mood

Mood

Mood

Mood
Mood

Mood

Mood
Mood

Mood
Mood




Mood

Mood
Mood


Mood




Mood
Mood


Mood




Mood
Mood




Mood
Mood
Mood
Mood
Mood


Mood

Mood
Mood
Mood

Mood
Mood
Mood

Mood

Mood
Mood


Mood
Mood
Mood


Mood
Please use the space below for your final comments, or if you have a suggestion for one thing you
would really like to see change on the site please let us know here:
I love Patients Like Me!!! I do not spend as much time as I used to on the site due to personal
time constraints but I know they are there for me whenever I feel like talking. :)
 I guess because I've had MS for all of my adult life I've stopped seeking out things like I use to
when I was first diagnosed in 1977. Now I'm just living with it the best that I can; sometimes I
think it can't get worse, but it does. Now I'm fighting to keep my cognitive functions as intact as
possible and it's scary. The next step would be a assisted living facility but I'll fight to stay
 Just make sure its m.s. and not a infection or something different -just dont assume its m.s.
..I enjoy any MS site that opens communication between MS patients....and sharing of issues...
Being that I'm a long-term MS patient (34 Yrs.), it's impossible to guess, as was suggested by this
site; dates of treatments, treatment changes, & exacerbations. I feel that if I was allowed to enter
the month & year of certain event's such as mentioned above, my profile would be much more
accurate & therefore more helpful to those viewing it & seeking information. The informatin that
I've been able to provide thus far is quite incomplete because of the date in time requirement on
better instructions on how to use the symptom chart....
Could you change the time period for the chart options from either 6 months or all, to a
continuous strip? Some period (6 months, 1 year, 2 years, 5 years - patients choice) would be
automatically displayed, but the historic data could be available to pan back over. IT'S A GREAT
SITE - NEVER THOUGHT I'D BE SHARING MY DETAILS WITH OTHERS AND GETTING SO MUCH
Fortunately, I am currently what my doc refers to as "near normal." I have not had a relapse since
my diagnosis and start of treatment -

about 1-1/2 yrs. ago. I know that this may change at any time. It has been comforting for me to
know that the utilities and support that patientslikeme offers are readily available - for the past,
Good to find others in the same situation as myaelf. Talking about Medications lik LDN has been
very helpful. As long as we keep andy corporation out of this we are going to be ok.
have a faq section with professionals that is dedicated to treatments that are often prescribed for
long term msers eg steroids for relapses even if u take a disease modifyer or what is done for the
How about a very compact 30 day at-a-glance sheet. where we can note our daily symptoms and
severity, this is a sheet I would take to the dr. with me monthly or quarterly.




I see my dr. every 8 weeks...and so many symptoms come and go...I wish I could remember them
all to give her accurate reports.

Thank you...
I am fairly new at using the site and haven't taken the time like I would like to on it. But I am
excited to know that it is there and have found it very valuable for what I have taken the time to
use it for. I especially am looking forward to the fellowship with others out there dealing with the
I am so glad I found PLM after my Dx. The other members and the support members are great and
really give great info. If im just having a bad day I log onto PLM and I feel better knowing I can
talk to others who know what I am going through. Great website. Thanks!!
I attempted to use the form printed here for my Neuro. I felt that he was unresponsive and
uninterested. I wish that I could go back to my first Neuro, as I feel she would have been more
involved in the information provided. I continue to seek a caring provider.
I could not figure out how to download a photo to my profile.
I couldn't get through the tough times without this site.
I don't feel the site is that user friendly and thus my hesitation for not going there. I feel I could
not adequately answer the questions as I had not been signed in for some time. The time required
to keep mtyprofile updated is a factor. I think the web site is an excellent idea and do not mean
to undercut its effectiveness. is just that it requires more time than I have energy to devote right
I don't have a lot of time for PLM, but I'm very glad it's there. . .it's a huge help.
I enjoy reading other people's opions and thoughts. I learn alot from that.
I feel I've had MS for long enough and am stable enough and have enough else to do that
patientslikeme has little to offer me, and I don't think there are enough patients like me for me to
I go there more for legal questions, than medical information.
I have been completely happy to meet others that are going through the same sympoms and hear
how they handle it. Communicated with people who are new to the site and don't know how to
handle having the disease. Just writing back and forth I can stay more positive which helps other
I have enjoyed being a member of PLM and have found the treatments, symptoms and forum
sections all very useful and informative. At this time I can't think of anything that should change
I have found a sense of community and hope at Patients Like Me. Even though I don't sign in and
record my information as often as I should, I do visit the site often.It would be nice if I could get
I have not utilized this site as I should have. I think it is a very helpful site. I feel more connected
to people who understand me. I plan to use this site more often in the future. Keep up the Good
I have really enjoyed all the functionalities of this website and it is like a security blanket to me...
I have what could be considered a mild form of R/R MS & no longer take medication. 1. Because I
was doing well & 2. Because of the cost - Earlier, so much of our monthly income was consumed
by health care costs & now we have a critically low income. Thank the Lord for Medicare!
I just wish it was like it was when I joined back last summer. There are SOOOO many really nice
people who have left, or just disappeared from here. There are soooo many new people it IS hard
to keep up and to get to know them. I have been busy with my personal life, and don't get here
too much. I am a lone support group leader since my co-leader's resignation, so that leave me
VERY BUSY. It just leaves your heart empty wondering about those who you got to know and who
are no longer here. Maybe I just can't deal with change all that well.....

HOPEFULLY, I WILL be able to come and jump in more often. I also DO really like the reminders,
from you for this and for the reminder to update my profile! Those are most appreciated! Thanks
for being here! I get lots of info here from the forum to take to the group such as inspirational
stories and new medications and research info. Hope my answers helped! Contact me again for
I know it's not the sites fault but sometimes I'm afraid to get in on a conversation because I feel
I've been made fun of or put down for my comments or contributions. I'm always respectful of
others and I'd like the same. I just had to get that off my chest. Other than that I love the site,
but I don't get in on conversations anymore. I just read and sometimes learn, it's kind of clicky.
I like your site. Here are a couple thoughts:

I've always thought it would be good to have an online 'Injection Log'. I use a paper book
provided by Teva Neurosciences / Shared Solutions and this could be a big draw for me.
Updating treatments is clumsy and time-consuming, so I update it about once a month. I'd do
more if I could rip through it in minutes (I'm a Web Manager, so I can move quickly through Web
Apps in case you're wondering about my PC competency).
Where I am right now, I want to talk about cures, treatments, and epidemiology. Perhaps splitting
the boards entirely could help: chatty/emotional section vs. irrelevant life vignettes section vs.
diet section vs. hard core science section - right now it's a bit much to wade through.

You may also want to get experts to preside over 'Topics of the Month' - not a section moderator.

Bring in Dr. Terry Wahls, Montel Williams, or Ashton Embry for a month. Get them to post a
weekly board topic, or host a webinar about their approach to MS.

I get frustrated with this site because the users (in my mind) aren't open to new treatments or
experimentation. Many of the threads seek emotional support (which is crucial), but it starts to
crowd out the more hopeful conversations.
I love your site, I don't use it much as my brain is often foggy, but am starting to use it more.
I mainly use the site to track my symptoms and medication. I go to the forum occasionally but
dont spend much time on there due to how busy I am. I think its a great site and it helped me
alot when I was first diagnosed and was needing tons of information. Everyone is very helpful and
friendly. I wish I had more time to spend meeting new people that have the same issues as I do.
I really enjoy and use all the tools available, but often feel alienated by the forums. There is too
much snarking and backbiting to make me feel at all comfortable there. As a result, I mostly use
the tools and try to stay away from the forums.

I really appreciate all the hard work that goes into making PLM both useful and easy to use!
I THINK ITS A GREAT SITE.
I think the site is wonderful.
I think you are doing a great job. I like how the forum is monitered, It helps keep everyone
focused!

Thank You for providing such a web link, where everyone can share and learn. I have definately
I think you have a good site that is of service to many people. I've just realized this kind of thing
doesn't fit me personally.
I think your site should offer information to people with ms about getting health care for people
who dont have insurance and cant go to a doctor to get treatment, shots, and meds they need.I
cant treat my ms with the injections I need.I no longer have insurance due to going through a
I use this site only to put my conditions down. I dont use it to meet people which I probable
I was just getting started on this site when my computer crashed so that is why I really could not
answer some of the questions--I did not get information about other treatments that the patients
could suggest. I have progressive MS and I wanted information about my walking because my son
is getting married and I wanted to find a way to make it easy to walk down the aisle instead of
I was not a good choice to participate in this survey since I haven't used the site, other than to
update my info. I put "agree" in areas where I couldn't say that I haven't used it.I think it's an
excellent idea, and I intend to participate but I've been very pressed for time and haven't had the
I wish that we could see other parts of the forum, and not just the parts for the MS people.
I would enjoy a news area where this site aggregates news stores for my disease.
I would like a way to connect my health care provide to this information so that it becomes part of
my medical chart. I believe strongly that I plan a role in my medical care, and I think this resource
is a great way to reflect that with my physicians. I would like a better way to reflect the good
feelings - not just how bad the disease it getting. How are we feeling mentally, more positive. At
first when I joined it seemed different than other groups out there related to my chronic condition.
Now it is more of the same, negative fear based chatter. It is important to have a positive view
and finding ways to reinforce that on this site would be helpful. I would like to also see researchers
utilze this as a tool - and get involved with the patients more. I think you could find a way to
charge a fee even if small to increase awareness and provide more self directed care. I believe that
this is a move toward people taking charge of their healthcare and the future of medical solutions,
I would like to have a new orange braclet from the ms society to help suspport our cause, but you
can only purchase a bag of them for several dollors. Would anyone be interested in get some and
putting them for sale here. I only need one. Not a full bag.

Thank you for putting this program together. I have been able to make some really good friends,
that understand exactly how I feel.
I would like to know how I would know when I am having a relapse versus sumptoms
I would like to see ;A chat room, Upcoming medicines, Dr explanations video


I would like to see an actual reference of collective results on CAM therapies used by MS patients
that have been posted at this site. I would like to see the results used as a basis for approval by
the FDA so that CAM or natural remedies could one day be covered by insurance companies. I
have had a lot better results from using essential plant oils than I have from using synthetic drugs
that are covered by insurance companies. It is a shame that what actually works for me has to be
I would love a list of hoghly recomended excellent docs in my area


I'd like to see the forum be controlled somewhat. When I first joined within the first week I saw
negatives about my state, my age and support groups. Three things important to me. About a
certain member, too. I really don't want to be in a fight so I haven't participated much in the
I'm glad for PLM forum ,when I start a new medication and I want to know what to expect and just
to hear new information about my condition, the only thing I have problem with is that their is a
lot to updated new medications and updating your porfile--for me is very exhusting to do- I think
I'm very well informed about MS. What I find most useful on the site is tracking my symptoms
over time and recording all doctor visits. The doctor visit page I find somewhat difficult to use: not
I've enjoyed the site, I stumbled onto it somehow starting with Montel Williams' site. Otherwise, I
wouldn't have known about it. The site helps me put my symptoms in perspective when I realize
there are others who are much worse than me and that makes me feel very fortunate. Thanks.
I've had MS for over 30 years. I'm a "pushy old broad" and have always been highly involved with
my physicians, asked a lot of questions of them, and made my own decisions. I like PLM for
keeping up with new things happening with MS treatments, but usually do my own research and
don't rely too much on others. I am a peer counselor for the MS Society, and when folks ask for
I've recommended this site to many of my friends & family! & I love the improvements made that
make things easier to fill out! Makes it so much easier on my brain that has trouble understanding
things. 1 suggestion is to make it easier to go back to the pages we had started on when updating
our profiles w/our MSRS, symptoms checklist, etc., as I had to open things up in new windows just
to be able to go back to the symptom page I was on, as the other way was too hard as I instantly
In my fantasy, new people will not be able to post any topic that has been posted already. To be
truly honest, this is the only reason why my usage of the forums has dropped significantly over
the past couple of months. It is extremely irritating when the same topic is posted by two different
people within an hour of one another. New users are simply not searching the forums to find an
in my opinion some of the questions in this survey could have been easily answered with just a
It is a little confusing in trying to navigate the site in someways.
It would be nice if patients were grouped by number of affected areas also. You see someone who
has had MS for 10 years with few symptoms and you want to know what they have been doing
it would be nice to have an easy way to view threads and info relating to a specific treatment or
symptom without having to wade through dozens of redundant nubs
LIKE THE SITE, WOULDN'T CHANGE A THING.
make it more understanding and fun
most of my "disagree"s were really "not applicable"s. Because my MS is so mild, I don't spend a
lot of time on patientslikeme but i love the concept...when I was first diagnosed in 1984 it sure
would have been helpful. If I had known then...thanks for doing this...i'm sure it's helpful for a lot
Much of the knowlegde i have I recieved before joing this site. many of my anweres are based on
the fact that i did my owm research and the information offered here has been redundant or backs
up the information already obtained. If one knew absolutly nothing about Ms treatments or
My heathcare team doesn't work together! I'm always mentioning information I've learned from
PLM... only to have my providers blow it off as unimportant or "I've never heard of such a thing"
Example: I got a severe tooth infection caused me to need 3 root canals due to Tysabri infection
resistance. My neuro a MS specialist said, "he never heard of such a thing" even though I had info
from the drug insert given to me by a PLM'er. I fired my neuro...don't have another...No DMD
because of firing my neuro. PLM is great...doctor's not so much...no respect from doctors on my
never had a relapse,yust continual straggle.

don't go to visit Dr she comes to me,
News about new treatments, therapies and diagnostics, and a blog for people to comment on the
NO ALL GOOD
No Password or login
nothing,in fact I need to go on it today
Nothing!! Its a great site I've learned so much from it!!
on the Forum, perhaps you could find a way to let us respond directly to an individual posting or
reply, so that a single post might develop several threads. As it is, the replies are all jumbled up,
and if there's a complicated posting it's hard to follow the thread. You can see an example of this
PatientsLikeMe is the only website that I visit on a regular basis. It would be nice if there was a
chat room to use if we needed to talk to someone right away instead of posting topics on the
forum.

If you are ever wanting anyone to test a new feature out prior to going into production - I'd be
more than happy to participate. When my employer, was launching a new program that we were
going to be using, I was given test scripts to follow and report any errors that I encountered.

Please keep up the good work and continual upgrades / improvements you have made. This site is
really starting to help in my life and treatments.
PLM is a GREAT site... lots of info regarding meds - which has been a tremendous help for
PML has helped me in so many ways. The people on this site are wonderful and really care for one
another. It is great to have a place for information and to just talk to others that understand.
Site is very nice and helpful, provides unbiased, statistical information otherwise not
available.Please clean MS site from ALS related links and information.
site's all right
sorry for being not present lately, will try to stay in touch more instead of staying in my bubble
still too new to really comment on this question
Submitting all of the medical information is exhausting.
Thank you for such a wonderful place to share!
THANK YOU FOR THIS SITE!
There are just so many posts, that they are on the front page for just a few minutes. I would really
like to divide posts into different catagories, OT, diagnoses, medication, spiritual, chat, etc.
There is WAY too much religion on this site. There is also way too many cliques. Both reasons I
have stopped contributing to the forum and using the MS scores things.
This is a good site. I enjoy reading the information, however it has not had a significant favorable
or unfavorable impact on me or my condition.
This is a safe and informative site. I LOVE it!It's fun too!
This is a wonderful site that keeps me informed and also helps to motivate me. With MS I need all
the motivation I can get.
This is not a fault of the site, but exploring Patients Like Me is very sobering. I do feel less hopeful
about healing when I see how bad it is and how bad it gets for so many people. I spend my life
getting along as best I can amongst a world of people who don't have MS. So I am focused on
doing and being, and although walking and balancing etc. are often really hard, I don't think about
it much. I explore Patients Like Me and have trouble not getting worse just from lowered
expectations about getting better. A reality check, I guess. Just not the reality of my hopes. I DO
This site is very helpful. But, I do not depend upon it solely for all the information about my
disease, treatment, preventitive care.... I use it as a resource, as any information should be used,
then I make an educated decision with my physician in my care.
too many "OT" topics in the forum. they are fun but not what I am looking for on this site
Well, I began using the site on the recommendation of a friend who had heard of it thru others,
stating that it was a good place to make friends and to learn about my condition thru others. I
haven't used the site as often due to working full-time and not feeling a part of the inner group, I
was welcomed and than nothing even when I responded to topics or attempted to visit with
others, it has been disappointing to me. I was hoping to find some support because the town I live
in doesn't offer support groups thru the MS Society, the ones online aren't for my circumstanes. I
You are all great and doing a wonderful job. A world of thanks. Xxx
You are doing a great job. You seem to be able to rapidly see what changes are needed here and
you are great about reminding newcomers of all the helpful bells and whistles you have added to
Your survey questions focus on medical profiles, quality of life improvement, and patient - provider
interaction.

I would focus this site more on the patients' ability to build their own profile and track their
progress and relapses, allowing narrative notes by the patient. I would make this PRIVATE data. A
lot of people are very uncool about sharing medical info on the web. It's a liability.

The 'networking' forum should be a chat room that's available and organized by topic. It shouldn't
be the key focus of the stite.

Provide links to full research articles and case studies, allowing people to include those links or
articles in their Doctor's report.
I'm not a good candiate for this syrvey because I don't us it for what it's designed for.
I really like elists, as I can get a daily digest of group comments. It is more convenient than a
website, as it doesn't require logging in to a forum or firing up my browser to a URL.
Truthfully, I haven't used many of the features that are offered. I am mostly in stage I of PD and
lucky to have a great internist, neurologist and long-term psychiatrist to travel on this journey
with me. I probably will need more support as the disease progresses and I experience more
 At first of was scared to write about myself, fearing none would undersatnd, but I was welcomed
with open arms, Then I got ill, and I had to stop my daily visits to the site because it wasn't good
for me to dwell 24/7 about my PD. Now I come to this web site for updates and ask questions. I
am so relieved to find others with simlar happenings and/or symptoms. Some of the
stories/writers are a HOOT and I go, hey I wore my shirt inside out to church, too!. Everyone is
friendly, I have three stars but haven't figured out how to get my t-shirt yet. Thanks for your hard
 make the section on symptoms more user friendly for updating information
A little too much frivilous posting
A moderator for the group
Because of this site I am more willing to talk about my condition. Also, because of info I received
from this site, I went to my first conference and met others from this site.

If it was not for PLM I would still continue to keep to myself and be ashamed and not communicate
with other "patients like me".
communication is a little difficult with other pd patients
don't see any reason to change. I like it the way it is. Easy to read, easy to find information.
easier navigation around the site
EVERY ISSUE SHOULD HAVE AN ARTICLE BY A LEADING HCP IN THIS FIELD.STRONGLY
DISAGREE ON THIS TYPE OF ?'S IN THE ?naire. MUCH TOO NARROW A REPONSE RANGE.
everytime I log on to my page, under symptoms there's a long list of every symptom I can chose
from. Having the list there makes it look like I'm saying I have all those symptoms. I really dislike
that. It so confusing for the first few days I kept reentering my symtoms because I thought that
get more professional people to use the forum
good site; helpful; would recommend
great resource - should use it more thanks,
Great site keep it up,
Has helped me learn a lot about PD and varying treatments. Appreciated heads up on 23andMe.
Feel like I 'know' a lot of people with PD and there's always somewhere I can ask questions.
honestly I was sooo happy to find your site since I was just dx with young on set parkinsons and
found alot of site were for older parkinson patients, it was a blessing to find your site to discuss
issue and also meet wonderful people! Thanks for developing this site and keeping it updated!
I really appreciate having this site available. I value it chiefly as a resource for obtaining up-to-
date research information as well as practical advice for managing pesky symptoms. I am very
satisfied with my MDS, who is very supportive of PLM. I don't think PLM has had a marked
influence on my course of care. The advantages have been more subtle and not so readily
I am at a state of relative stasis, have accepted the diagnosis, have a good life and a great family
and friends. I use PLM most when I am emotionally or physically needy or have insomnia.I share
info on the existence of the website to friends who have medical issues about which they or their
I am early on in the progression of Parkinsons. I expect to get greater benefit from PLM as my
treatment and medications become more complicated.Keep up the good work! I think you are at
the forefront of aggregating disease information for the benefit of both the patients and medical
I am fairly new to PD, DX Nov 2008, so tried to answer to the best of my ability. Mary
I AM HAPPY AS IT IS
I am so pleased to have the priviledge of using this site,..it is very re-assuring!!
I am still in the early stages of Parkinson's. I do not share many of the issues that many others on
PLM do. However, I learn much about what may be in my future from the discussions on the
forum. I don't find the contorversial subjects very helpful. I don't continue reading those threads
I am too new to have most of my answers "fairly" answered. am not on the learning curve yet as I
have not really spent quality time in the site...
I am very fortunate to be still mobile. I have gained weight from taking Stalevo, but the weight
gain is better for me than the tremors in my hands and legs, the "freezing" in my walking, so I am
not as concerned about the weight gain. I'm almost 63 and bikinis don't appeal to me anymore
anyway! This website will become more and more special to me as my disease progresses, and I
know that at some future time it will. In the meantime I have made great friends with several
people, some of whom are in much worse shape than I am. I have always promised to be myself
which is blunt and sarcastically humorous. I have a few with whom I correspond almost
daily.....they say my sense of humor gets them through their day. In helping them, I am also
helping myself. I have PD, but it doesn't have me....yet. I hope I won't be dropped from the
survey as I will be out of town until April 21st. To all of you, Happy Easter and please keep this
I am very happy to have found this site.
I am very new to your site and have not taken the time to examine it thoroughly as yet. However,
I have found some benefit in the brief visits made and as one diagnosed six years ago, I was
surprised to find something so quickly. In my opinion there is no question that this site is very
valuable to all PD patients and will be to me soon. Thank you for including me in your survey.
I applaud your efforts to provide people afflicted with PD a way to learn from their fellows.
Unfortunately, in this busy world, I currently find other sources (e.g., NPF) more authoritative. It
seems the emphasis at patientslikeme is more on group psychology through the exchange of
information. Also, asking members of my health-care team to take time to participate with me
I avoid the ramblings about stem cell It got a little arguementative
I do not have much time to spend on PLM, but hopefully it will be different some day. I am
involved in so much related to PD--from writing songs to lobbying Congress. But I do enjoy it
I do not use th esite as much as I would like to, I am very active in my county's local Parkinson's
Disease support group. I sometimes get very frustrated with your site while trying to navigate
thru it; especially when trying to update my symptoms, especially when I have made a mistake
and try to correct my mistake(of course it could be computer illiteracy on my part. Thank you for
I do not use this site to it's full potiencial. This of my own doing. I find it easier to speak to
someone on the phone or in person, than on the computer.
I do NOT visit this site as often as I could. The one thing I would change on the site is the ability
to understand the percentage rating and increase in symptoms.To myself it is confusing.
I don't feel that I was able to answer your survey to the best of my ability because actually I never
learned how to use the web site. So all I have done is fill out the original questionairre and I
updated it once. Most of the quesions on the survey I just answered negatively or said that I
I don't like getting reminders to update my information. For one thing, there isn't much to update
as often as you send reminders. Besides that, I may not want to tell you everything. I don't know
you. I am not real comfortable with posting everything on the internet.
I don't use this site as much as I should. But I just cannot seem to make time to read or evaluate
my condition. I know I could get more out of it.In the past and now I am obese and have
stoppped the medications, but not for weight, for the amount of money I have to spend for drugs.I
wish I didn't have to deplete all of my savings. and then go on Medicaid.This is a giant dilemma
for me.
Makes me want to punish my body and just somehow quit taking pills to move.
I feel conflicted about the mix of information vs. personal support one finds on the site.
Sometimes you are following a thread on a forum and it wanders off into a more and more
personal exchange among a few people who use the site a lot. That can be entertaining to read or
even join in, but I also think it's intrusive when you're looking for information or for a more
elevated discussion of an issue.But I can't imagine how to handle that without damaging the
I feel I am welll-adjusted to life and being a PWP. Prior to PaiientsLikeMe, I was an active
participant in the Public Discussion, and found the transition to the new Fourm tedious and
difficult, so I never really tried to change.I have never really felt a part of the PLM "family",
probably because my MDS and his staff do such a great job of keeping me informed and providing
I feel now that I would like to use the site on a regular basis.
I find it difficult to comment on my Parkinson's because I was only diagnosed in the spring of
2008. I knew almost nothing about it and so I'm learning as I go. It might help a newcomer to the
site to pair them up with a more experienced member that knows more about the illness and could
I get annoyed at the constant reminders to update the medical issues. If something changes, I will
I got frustrated early on with the hurdles one had to jump in order to use the site. Therefore I
have not used the site to communicate with anyone.
I had no idea that you provide information, never bothered to explore the site, just assumed you
were building a data base on neuro conditions.
i have a hard time figuring out how to find all the information that has been mentioned in this
I have been a member , but I just cannot place great faith in a website. Where my health is
concerned I want to see a livind reathing movement disorder specialist
I have heard several people say that the one thing that's missing on PLM is a chat room. Now, I
know that a chat room was deliberately NOT part of the original idea of the site, and personally
I'm not a big fan of them myself, but I just thought I'd pass that along. I would also like to be
able to use different types of graphs for my symptoms, PDRS, treatments, etc. For instance, it
would be nice to be able to use a line graph, XY scatter, bar graph or other XCel type graphs, and
be able to change the range of the data easily (zoom in on a particular time period).

I love PLM, and though I don't use it as fanatically as I did when I was first learning about PD, I
I have no suggestions. I have not used the site as often or regularly as I would like. I feel there is
much more to the site than I have taken the time to use.
I have not been active user of Patients Like Me
I have only belonged to PatientsLikeMe for a couple of months so I don't believe I am a typical
P.D. patient to answer your questions. Give me another year!
I havn't gotten into the site well enough to know.        A better index would help. Possibly with
cross references I am a little overwhelmed by it
I lead a youngonset support group and I recommended this site..it is great to know you
progression and to find others with your symptoms and medications. I would like to have
available on my page an area to blog about how you cope and deal or just to blow off steam, share
I like the site just the way it is.
I like this site although I know I don't use it properly. I find it just a little bit overwhelming. There
is a lot of information to input if a person is going to take advantage of the site.
I like to read what other Parkinson's Patients have to say however I find it difficult to navigate you
web pages.Thank You,

I look forward to continued use of PatientsLikeME.
I probably should not have filled out this survey because I really have not used the website. I
think it is an excellent service, and I could probably benefit from using it. In fact, I think I'll do
just that. But in the meantime, don't give much weight to my answers because most of the
I really like the site and have now even put a question on the Form but as this is the first time that
I have even done this, I am still unsure of myself. I did receive some wonderful replies and my on
going goal as I am forced to work less is to have more interaction on the site.
i really should use the site more
I recommend this site to all newly diagnosed PWP that I come in contact with at local support and
exercise groups. I love this site.
I still find the site very hard to use, which is why I don't use it much. The other day I was trying to
update my symptoms etc as you asked, and after putting in the symptoms and saving those went
to the place to r egister my weight. The computer refused to accept the change and I logged out in
i think a chat area for on topic issues would be great. i think you've done a great job of beiing the
go to place for information about PD. in addition, you've done a great job of diplomatically
redirecting attention to what the site is about info and support.another thing that would be great
is to partner with adpa for some pd 101-type webcast/podcast. i think you've done a tremendous
job, and partnerships with some of the key groups could be beneficial to all involved.
I think PLM is a great site, and while I find certain aspects of it annoying at times, those aspects
have mainly to do with the personalities of some of my fellow members. If you could find a way to
I think that patientslikeme is a good place to go and learn more about the parkinson's diseased.
I think the site is user friendly and covers a multitude of issues. The same folks seem to
consistently use it. I appreciate the emails notifying me when there's something of interest to go
I think this site is a wonderful idea. I love the interaction possibilities. I love the charts. I hate
the lakc of help/and/or a way to get help for computer challenged people like me. I would love to
participate more on this site. Unfortunately, My data is incorrect and that bothers me a lot. i put
some onto in but didn't have time or access to my very large amount of data at the time i entered
it. when i did have time. the system wouldn;t let me go back and enter info. i have taken over 15
meds over the more than 21 years i have had pd. hense lots of data. I could not find a place to
put the huge differences between my on period and my off period symptoms. and the dyskenesia
I think this site is very good and very informative. I have trouble with keyboards so I don't
contribute a lot but I always read what others have to say.
I value the direct patient-to-patient exchange of thoughts, moods, experiences, and opinions on
things related to PD primarily. The social support is actually more valuable to me than the pure
medical stuff.Making those contacts and associations easier to make is a good idea in general,
I very much enjoy this site - I am just so busy and tired all the time that I do not log on as often
as I should. I really appreciate all the work it takes to keep this site active. You are a great help
i want to know how togewt into the chat room,
i was able to get to reach your request for survey, directly from your email. this isn't possible for
replies from pd patients like me. how come? this would make using the site much easier. having to
search for the replies through google etc. is timeconsuming and wasteful. if your really committed
to the patient's wellbeing, why don't you provide direct acess?
I whole heartedly recommend PLM to every patient, caregiver @ Service provider I meet! I also
caution them to independantly check out advice as all info is self reported. My other caution is for
patients to be 100% vigilent in monitoring time on line! It is especially important for those of us
with incurable, degenerative disease to "seize the day!" As valuable & helpful as PLM is, (how dire
this illness would be without PLM!?!)

Time on PLM should not replace time with our families or real life! My world famous MDS
suggested PLM to me! My 11 member treatment team reviewed it and sees it as valuable! My
I wish there was a little more interaction on the site.
I would be thrilled to hear PLM has decided to actively participate in implementing the Ntional
Information Technology Database proposed by President Obama. I have previously submitted a
report to the Dept. of Health & Human Sevices Secretary as requested by that office. The report
includes a recommendation that systems such as that developed by PLM be examined for possble
use in the system desgn. I also suggested they should solicit RFP's (Request for Proposal) from
I would like to be able to communicate with everyone; I have a problem now figuring out how to
do that . . . We learn by trial and error on the computer (at least I think so). I got rid of the
tremor ok but have had lots of problems with walking; I will admit to being overweight and a
couch potato which I know doesn't help. I would like to converse with someone who has had a
similar problem after DBS. I am told that I am a difficult case as I am so sensitive to the meds
(e.g. It caused foot dystonia when I was taking too much carbodopa-levadopa and Mirapex. I
I would like to see more on-line research information, surveys, etc., or at least more feedback to
users on how information is being gathered and used. I would like to see someone analyze the
information obtained from the thread "Do you have relatives with a Neurological Condition".
I'd like to be able to track the forums that I've left comments on so I can see who has commented
I'd like to see more pictures of my friends and their families.
I'll tell you when I've used it for a bit.
I'm always excited when I get a message from you that I have an e-mail AND THEN totally
bummed out when it's just some request for more information. I'll admit that it's my fault that I
don't fully utilize--or even know how to fully utilize--the site, but I'm not terribly comfortable
giving such volumes of highly sensitive, very personal information and getting nothing in the way
of feedback in return. Oftentimes I fill out one of your surveys and wind up feeling that I'm just a
lab rat. And, by the way, I'm relatively sure that I will not get a response to this SO "Do YOU
I'm sorry I have not really used the site so I cannot offer any suggestions.
i'm sorry to say i have not used the site since being diagnosed with cancer in Oct 2008. i had
cancer surgery in Jan. 2009 and am recouperating. my parkinson's has sort of taken a back seat
to the cancer. my husband, who was my caregiver, has had two strokes and is now in a nursing
I'm very thankfull for all the information that I found.
I've been a member sinve the first weeks. I think it was more fun then, try correcting that.
I've had PD for quite awhile, and it was actually neurotalk and "Ask the Doctor" on parkinson.org
that made me a well-informed PWP since I knew about them before PLM. I enjoy PLM the most
and go to it first. I find it difficult to fill in the information for the scale because I'm different on
and off (naturally). I wish you would make a different scale for how we are on and off. My on
I've had PD just over 2 yrs and am not on a treatment program per se -- I take only .5mg Azilect,
so information on side effects and dosage and Rx options has not been of interest to me at this
point. I think you are doing a great job; can't think of anything to add.
Is helpful to hear about how others are coping.
It apprears the site is an outlet for needy patients who aren't coping. I need direction on how to
deal better through knowledge and being better informed on the subject. I have an excellent
doctor and am in a utsw study with creatin. Since PD is the prognosis, I just need to know all I can
about the disease and how best to deal with it (ie I cut my Senimet dosage in half to hopefully
avoid diskenesia) Any information that could be gleaned is most helpful; self pity is not. Many
It is fantastic, I have not used all areas, and have a lot to learn abut the site. I do plan to become
more and more involved as I have more time to do so.
It's great!
more emails so i can use and understand the site more
more info for spouses and or caregivers
More information about alternative treatments
Most answers require far more detail than your selected statements.
My disagree answers indicate that I have not used the site for the stated question, rather than I
disagree that it can be used for that purpose.
My symptoms are controlled by the medications I take. About 90% of the time I am "symptom
free". I own a business and do 3 massages a day, Incontinence and problems with dry eyes are
my chief issues. That and side effects from Requip (I am very interested in sex these days). Your
site provides information when I care to use it. I regard it as a valuable reference though I use it
My wife signed me up 7 months ago, I just found out aboout the site last Friday March 20, I spent
5 hours on the site and about 5 hours the next day. I learned about "23 and Me". Have made
contact with another PD Member and enjoy the site.
No change, I appreciate the site
none (memory lapse, again...)
PATIENTS LIKE ME HAS HELPED ME ACCEPT MY CONDITION AND TO KNOW OTHERS HAVE
BENIFITED FROM THE SAME TREATMENTS I HAVE - WHEN I UPDATE MY PROFILE IT IS DIFFICULT
TO SET MY PHYSICAL EXERCIZE TIMES AND REPITITIONS - FOR INSTANCE=TIME ON TREADMILL,
people should avoid poking fun at others problems or making inferential comments(I wrote to
Moakes about this and never heard back) but check LSBGT(?sp) column,the thread about
PLM has helped me build confidence as a person . Through the site and through people i met on
the site, I am surprised at jhow well informed I am. Because of it I am now a member of the area
chapter of our state Parkinson's foundation. I keep them informed of new things I have read or
PLM is a great website and has helped me very much. Thank you for making PLM available.
PLM is doing a wonderful job, just keep up the good work!
PLM is great! I really appreciate it and would be completely lost without it. I've met 3 other PWP
my age in the last year, and have plans to meet with 2 others. Our friendships continue. It's
promote the forum
rsurvey took to long
Site is helpful but somewhat tricky to navigate if not familiar with program. Is there an easy way
to summarize treatments and dosage in use, time used by patient and benefits for specific
symptons based on similar patients? IE azilect, Requip (XL),tylenol pm, benadryl. I always seem
to be sorting blogs for benefits and looking for help from your available statistical slices.Other wise
site seems to have lots of friend groups and not real welcoming of new people so I mostly use it to
track symptoms and look up specific information
Some of the friends on PLM have written me some very encouraging things that make me feel
better about PD. It is all new to me since I have only been diagnosed with it for 3 months.Thanks
Some of the questions did not apply to me. I think that on all questions there should be a column
that states "Does not apply". Some of the medications questions especially should have this.
Every one is so different with PD that I felt some of the questions regarding sharing medication
info can get out of control. It happened in our Support Group. A new member told us how much
ReQuip she was taking and some of the members sighed and some other ones told her she was
taking too much. She totally 'freaked' out. Called her Dr. the next day, had an anxiety attack,
and questioned the Dr. about the dosage she was on. Dr. was not happy. She never returned to
the Support Group!!

Some of the questions need a NA ( non applicable) answer.
Some of the questions were difficult for me to answer. i.e. How well informed am I about my
condition and who is responsible for my treatment decisions? Not given as an option, but my
truthful answer: Very well informed and my doctor and I discuss and agree before starting any
new treatments. Another one was 'HOw often in the past 4 weeks have I clicked on PLM? Well, if I
was home, it was at LEAST 2 times every day; however, I have been away from home more than
normal the month of March, so my answer was several times a week. There were several other
questions that I answered but did not really represent my answer.

I LOVE this site and cannot imagine any one not benefitting from it. At this time, I cannot think of
any improvements or changes to make. I have said many times to non members that PLM saved
my life. While that is not actually true, it certainly has restored my enjoyment of living. PD is
such a lonely disease because unless dxed others do NOT understand what a person with any
Some of the questions you asked I had to respond with disagree because there was not an answer
"does not apply to me". I am presently not on meds for the PD.
Some of your choices in the survey are too arbitrary and don't allow for the ambiguity that actually
sometimes think people over concerned about minor symptoms
Still uncomfortable about broadcasting medical information globally. I fear overwhelming spam
thanks for the forum. i like that i have found others that go thru the same reactions as i have. i
wish that more of those that come to this site had something to hope for in the future. i have
The ability to follow more than a single diagnose, e.g. my diagnose was initially PD and now the
MDS aren’t sure what my problem is..PD or is it PSP OR what the hell my unique body tellinng
The best thing that has happened to me lately is finding PLM. I just happened to find it one night
while searching PD. I love the support from not only the patients, but also the staff. I have learned
so many things from this website. I feel comfortable sharing my info with other people. It is a
blessing to be able to talk to people who really understand what it is like living with PD. Here I can
be myself. I do not like to worry my family. I love PLM. I thank each of the staff for being a part of
my life. I am so grateful for your hard work in making my life easier. The only thing that I would
like to change is the way you find info like the abbreviations for words, the explanations of the
items on your profile, and info like that. I can never find it. But then again, it might just be me. I
the info in the profile especially about diagnosis is too time-consuming to enter. i saw many
doctors in those first years and there's no way I'd sit down and type all that info in. also there
seems to be a lack of response to some postings on the forum. that makes me less inclined to
The only final comment is to keep up the good work/s that this site provides. It seems to me that
through the efforts of MJF, and others, the medical profession is finally realizing that PD is not just
"an old persons disease", as it was with my initial quest for answers about what was happening to
The sense is that there is a study "agenda" behind the scenes of this project. At first it appeared
to be even-handed in its approach, but through interaction realize there are specific areas being
researched for specific reasons with resistence to including natural alternative
methods/approaches into the database. Therefore the purpose of this site has a slanted approach
to members. However, it is well constructed and not noticeable to the mainstream directed
members who come to this site. The only suggestion would be to develop a more in-depth
the site is wonderfull but not complete not all the symptoms are mentioned some important
symptoms like leg tremor and how parkinson disease is progressing and how to manage with
these symptoms for one that will never go to the doctors
The site may be helpful for patients in the early stages of Parkinsons, but it has so far been of little
use to a patient like me who condition has progressed.
The steps to enter your information could be a little easier.
This has been an excellent tool for recording and tracking symptoms. Don't go away. The PD
patients need a resource like this.
This is my favorite site because I feel so comfortable here. Everything about the site is so helpful
and informative...Thank you everyone for all you do for us.
two comments.
1. i have been fortuneate enough to have local support.....i believe plm is invaluable for folks w/o
such support
very frustrating to be asked the same thing over & over and there's not always a category for the
answer I want to give.
Well done. What survey package did you use?
When I was dx I received two directives. 1. requip 2. go on the internet to learn as much as
possible and to find a support group,

Offline my social network already included a number of people working in the medical field. Plus
there are three of us with PD. But sometimes its good to expand ones horizons - find out what
the rest of the world is doing. Thats where PLM comes in......
you all are doing a nice job with this site. Thanks for keeping it online for the Parkinson
You do a great job - very authenic, down to earth - information from others is priceless - thanks
You have made many good improvements to the site since I joined. You've even used some of my
suggestions. Thank you!
 the ability to compare all treatments easily and quickly. a way for us to see what people are
having some positve changes and what the patients are doing to possibly make for some good
Add concurrent medical conditions. Attempt to see if some pattern or frequency has relevance. For
example, I was recently diagnosed with glioblastoma multiforme and would like to know if this has
Any benefit or non-benefit I have received from this site is entirely my responsibility. The site is
As a patient with Primary Lateral Sclerosis, I sometimes have a difficult time relating to a majority
of the MND patients on here who have ALS. We share some symptoms, but as a matter of support,
most ALS patients have progressed far beyond my own condition. The reality is, my prognosis is
much different and as such so is my outlook. I still think in terms of a long term future while most
of the people I have met here simply cannot do that. I think it would be beneficial to recognize the
differences between PLS and ALS and maybe even have a different area for those of us who have
PLS. However, I have gained a lot from my ALS friends. I guess the bottom line is that I still feel a
I already had a feeding tube when I became a member. That's why I checked STRONGLY
DISAGREE. There was no other option.
I guess that there is only one thing, and maybe I just haven't figured it out, but once I post a topic
on the forum I can never find it again to see the responses from others.
I have not utilized this web site as much as I should
I HAVE QUIT USING THE SITE BECAUSE IT IS DEPRESSING TO ME. IT MAKES ME FEEL LIKE I AM
NOT WANTED OR NEEDED, I HAVE VOLUNTIERED FOR TESTS AND HAVE BEEN REJECTED BY
EVERYONE. I AM CONTINUING TO PROGRESS "BY THE BOOK" OF KNOWLEDGE ABOUT "ALS" AND
JUST DO NOT SEE THE POINT OF DISCUSSING IT ANY FURTHER. THERE IS NOTHING BEING
ACCOMPLISHED IN RESEARCH IN THIS COUNTRY AND FEWER PEOPLE THAT REALLY CARE TO
FIND A CURE. UNLESS THEY CAN MAKE MILLIONS OFF THE PATIENTS. DISCUSSING THE
SIMPTOMS AND DOWN FALLS OF THIS ILLNESS IS GETTING TO ME. THE PEOPLE ON THE SITE
i think the site is ok i have no suggestions
I think this is a terrific site, full of a lot of helpful information. Keep up the good work.
I use an eye gaze computer to type responses to your survey questions. So I would really
appreciate it if you would make the area to select answer, just a little bit bigger so I can select the
response with little effort. For example, to select an answer I look at the radio button and hit the
left mouse key. If you make the area bigger around the radio button, it would make it much better
for me to work the answers. You said that this survey would take 10 minutes. I took it and I spent
about 20 minutes to complete. I have reported this problem before and it appears that you cannot
I'm fairly new with the site and have not yet used it much for anything. I've been dealing with
disease for 19 years so there's not much anyone can add.
In the Lithium Survey I am not there although I am still on Lithium. I began with Lithionit, and
then switched to Lithium Citrate.
it is a good site to get to know other people with th same problem
More results on clinical trials which are ongoing.
Mostly there are no changes in symptoms and treatments. I would update my profile more often, if
I could klick on "no changes" or something like that! Otherwise it´s a fantastic homepage that
Some of my answers are really not applicable, due to the fact that I am early in my disease and
am in the process of confirming a diagnosis.
Things are fine as they are.
Wish the forum was organized more wiki-like to make access to older info easier on any given
Would be great to have a German speaking site as well
You did a good job picking up the lithium usage monitoring now pick up on the IPLEX usage as it
becomes available. All of us would like to try it but very few will get the opportunity. I want to
know what's happening witl those who get to try it
When using other sites I choose them because I prefer articles, research, and activism, I have
posted at other sites less than 20 times total!
About the survey: the I don't know/haven't tried this answer was a really good one. I would've
used itmore often if it had been available for all answers. I am too new to getting treatmant to be
able to answer all the questions properly. When that happened, I answered the best I could, but
sometimes it may seem I don't get as much good from this site as I know that I WILL, once I've
actually pregressed that far. And I can't give any useful comments about the site itself yet, either.
As I stated, more information alerts.
blog or journal w/ option to keep it private
Don't use it much because of availibility
easier way to communicate and talk with others who have my condition
i have more than one condition but can only be on patients like me for one. why?
everything is fine here
For me, I would like to see more of what treatments are working for other people. There is a lot of
negativity on the site sometimes, and I find that that isn't what helps me. Also, there is a lot of Off
Topic stuff that isn't posted as Off Topic. There are two threads with posting of "favorite prayers".
I'm not opposed to prayer, but this kind of stuff does not help me.

As with any forum, there are those folks who are only here to complain. Also, I think there is a lot
of self diagnoses going on here. All in all, it's a good site. Wish there were more people who were
serious about improving lives instead of putting much effort into applying for disability.

I find the charts a bit confusing. I think I get the most use from the forum, but I have to spend a
lot of time weeding out the crazies from the "normal" people. Sorry. I have met some nice people
here though. It's a good site. I just wish it were a bit more positive. I think people don't come here
as much when they are feeling well, so it's hard to get info on how they got that way.
Give more options for N/A for questions. Realize that just because I signed up on your site, that I
actively use it, or that the condition I signed up on is my most serious and pressing medical
problem. You do not cover my more serious medical conditions (inflammatory erosive
Great website, but I really haven't had a good opportunity to take full advantage of it.
I am new to the site and have not explored it fully. I love the email prods to keep things updated.
It motivates me to be more present and really think about how I am feeling and how I can better
I am still learning to use this site, but so far really like it
I apologize for not supporting your website. I hope that for others, it is a far greater positive
impact. Maybe because I am not in the USA, I feel that I am getting what I need. Perhaps I am
just a self supporter and dont require groups to support me. but thank you for letting me have
I appreciate the information and support I have received from this site. I am a little bothered by
the amount of religious threads being started on the forum. I would like a separation of church
I could not answer some of the questions in this survey correctly because the answers did not fit.
Therefore, I do not feel this survey will give the right stats.
I feel that this site can be helpful, but I feel that there are a lot of people that are just wallowing in
their pain and illness. I am a survivor, and I fight every day, I do not need to come to this site and
have people drag me down. I have tried to be uplifting in the past, but some people do not want
to hear it. This is a major reason that I am considering canceling my account.
i feel that this site is very helpful in keeping up with my symptoms, the severity of my symptoms,
meds and so on. also i find it to be great for finding others dealing with the same symptoms as i
am. one change i would like to see is adding a chat room. it is good to have a way to talk to
I find the ability to track my symptoms very helpful. Unfortunately i have never found a doctor
who was interested in this information and as a result it is not very helpful in actually influencing
the care i receive, although it has helped me get a better picture of my condition for myself. Most
doctors i have encountered have actually see use of this site as evidence for a wish to stay ill and
I have found comfort in knowing others share the same pain & it's not all in my head.
I have no suggestion for any changes as so far I have not had much time to spend on the site to
make opinion of it. It does help me though to see that I am not alone with my pains. Thank you
I have not been using the site to its full advantage as I am just too tired and in pain to spend that
much time on the computer regularly.
I have not met with my health care provider since I joined PatientsLikeMe, so it was a little difficult
to answer questions relating to that. I plan to use my historical information on the site for my
I have not used the sight to it's full potential, I am still trying to work and don't have time to just e-
mail people on the site. I think I will have to stop working and apply for disability very soon and
than I will use the sight more. I have never mentioned this site to my doctors.
I hope this site influences policymakers and research facilities by increasing funding for
fibromyalgia research. All current treatiment is for symptom abatment and there is no vaccine or
i know that a lot of people would like a chat room. and i think the Introduce youre self thread
should be pined to the start page.
I like how I can track my symptoms on this site. I always lose paper, so it is easier to keep track
I like the site -- thanks for putting it together and making it happen! Re: sharing of my info on the
site -- I'm a fairly private person and by nature am not apt to share my symptoms. This trait is not
at all a reflection on the usability of your site, though. :) Re: using PLM info at my doctor
appointments -- I'll give it a try, but she also has software that tracks info like levels of leptin,
I like this site as it confirms that I have a condition that is real and most all of the people have the
same problems confriming its existance.
I LOVE THIS GROUP .I HAVE MET SOME GREAT PEOPLE ON PATIENTS LIKE ME AND I LIKE
TALKING TO PEOPLE WHO KNOW,S WHAT I,M TALKING ABOUT. THEY UNDERSTAND. I SEEN YOUR
PROFILE ON TV.IF I WOULDN,T HAVE SEEN IT I WOULDN,T HAVE ANYONE TO TALK TO. THANKS
I love this site. I have recommended it to other patients, caregivers, and doctors. There is
something here to assist everyone in the understanding and treatment of fibromyalgia. I feel like
I love this web site. I really wished there was a way to find a common denomitor in all of us as to
the "cause ". There has to be something we all have in common.
I primarily use this site for online support - when no one else immediately around me will listen to
me complain anymore, I seek solace in reading about others encounters and prayers and it uplifts
me.

I don't look for other treatments in this site. I do like the FPMS (I hope that's in the right order) to
keep track of my pain and fatigue. May I suggest online chat groups within this site? or am I just
I really don;t use the site
I really don't have enough experience with the site to make a suggestion. As my knowledge of the
site expands, I will be able to increase my usuage.
I really haven't used the site long enough to evaluate. I guess I feel that the site has so many
members I sometimes feel lost in the midst of it. I don't know what I would like to see changed at
I really like this site. I am a nurse and just because I do not use the information for my care it is
helpful for me to see what others are doing and it is a great support system for those of us who
I really like your site and at the present time I can not think of anything that you would need to
change. Thank you for all your help so far. I really love the FOrum, reading and seeing others
questions and answers it has really helped me understand I am not alone nor crazy in my
I really wish there was a chat room. People have told me of others and how to get to them but I
am not very computer savvy anymore and haven't been able to get them to work. I feel that
communicating with others is what makes this site so useful for me but sometimes it takes a long
time to get responses using the forum. I like the forum to read about topics but sometimes I wish
I could talk to someone RIGHT NOW. I think that would be the only thing I would change about
this site unless you could provide links to ongoing research and doctors forums. Any survey I can
I take my doctor visit sheets with me to all appts. but have come across doctors who don't want to
take the time to even look at them. I don't know why, it's information that I think is needed to
best help me. I have more than one Illness and sometimes trying to pull the two apart to chart it
is very hard to do. Not sure that anything can be done about this, just thought I would through it
I think that coming here is sometime detrimental to my health. I sometimes think there is a lot of
whining and pitying going on. I know it is painful but I don't find a lot of positive talk. Just
complaining and it brings me down. Don't need that. I hate the"feeling sorry for myself" type
comments. I know there are a lot of people that get help here but basically the only thing I have
I think the site is good. I like the patient profiles and believe them to be helpful to others,
including researchers (However you do sometimes "nag" me to update when I haven't yet seen my
doctor or gotten tests back:)

Because I started out with a Traumatic Brain Injury, then developed Fibro and finally developed
CFS as well, meds have been a tremendous struggle. After four and a half years we're still making
adjustments. The survey asked a couple questions about meds that cause weight gain. I am
currently on about five meds that cause weight gain and/or swelling of the hands and feet. None
of my clothes fit me now; I feel like a shapeless blob. However, I told my NP that I went over all
I think this is a good web site; unfortunately, I do not have a lot of time to look into as much as I
want to with my schedule.
I think this sight is wonderful the way it is.
I think this site is really great - I learned a lot about my condition and now I understand where all
of my pains are coming from. I also know that I am not the only one and I can - anytime - talk to
a patient like me - and being understood by that person who will share the same symptoms.
I think you covered it all, P.L.M. keep us all well informed. I hope you always keep this site
because I think there would be so many of us lost without it. I look forward to writing back in
forth. I enjoy the forums and can relate to what others have to say. If I had the time and energy, I
i think you guys are doing a wonderful job. i need to log on more to have anything to suggest.
thank you for making this community and giving us fibro patients recognition i still don't have the
support of my family and have spent years trying to get someone to believe i was having real
I think your site is great for information.
I try to update my profile as best I can but my symptoms change sometimes from day to day so
when I update its based more on week to week and I may have had a coupe bad days in between.
I use this site for state of mind: everything is not in my head, it's real and others have the same
symptoms.It also helps me see what others are doing for treatment and if it has been successful.
I used the site alot in the beginning of my diagnosis but eventually I got more depressed reading
all of the complaints of the users. It really gets me feeling sad to read alot of peoples complaints
so I try to find the good users and see what medicine they are on. I know people need a place to
vent but it really depresses me. I am the one who holds it all in and doesn't complain becauses no
i would like to know what the official insignia for fibromyalgia is. i started a topic on a fibro tattoo,
and it got a lot of responses but everyone looks at things differently, it would be nice to get the
I would like to opt out, but have been unable to so do through the website.
I would like to see a chat area added, just for the fact that we would have an "at the moment"
place to go to vent some of our issues and be able to form relationships wth others that share our
pain, thoughts and feelings in a more one-on-one manner.
I would like to see more interaction be being able to talk and discuss what others are doing for
their Fibromyalgia symptoms.
I would love for this site to have a daily blog on the profile. Someone would have to go to profile
to read it, or keep it private. It would help track the daily changes in symptoms, and just be a
journal is wanted. The days I feel good, and the days that I don't.
I would prefer a site that is for multiple chronic conditions as opposed to just one. It is common for
one person with an autoimmune condition to multiple "diseases." That's part of the reason I only
use this site to track my pain/fatigue and symptoms. The information I find to have limited value.
I would really like to see you change the the area on medicines and procedures...it's not possible
(that I've found) to give a true picture of how I'm treating my disease. For example on Hot baths,
there is no way to type in that I add 1 cup of epsom salts to that bath...the dosages feature is just
to hard to navigate and is toooo limited on how I use some products and procedures.
I'd like a place for a personal journal to document my progress, how I'm feeling and any pertinent
information regarding what is happening in my life as it relates to my symptoms and illness. I'd
also like to see more information regarding clinical trials that we could possibly participate in. I'd
like to see links to other sites that provide information on this disease. I'd like to see up-to-date
I'm glad this site is here. Sometimes it is hard to stay positive when people keep telling you that
'you don't look sick'. I believe that having a positive attitude and accepting your condition goes a
It was difficult for me to answer some of the questions on this questionnaire. I needed a N/A
answer for many with SA, A, D, and SD. For example, PLM has not helped me take my meds more
regularly, because I was always good about that. I had to answer Disagree, but the answer was
really N/A. Also, some answers contained two answers in one response, so I had to choose the one
most like what I would answer. For example, I am highly informed about my condition and I share
the medical decisions with my doctor. That response was not available to me, so I chose the
It would be nice if you could have a freinds list and be able to communicate with just who you
want to privately in im or voice conference
It would be nice to have a faster way to see where to locate specific threads on the discussion
It'd be useful to have a symptom filtration system that seperated symptoms that are caused by
the primary disorder (i.e. Fibromyalgia) and then conditions/symptoms that might not be related
to Fibromyalgia but are experienced by the patient. This is helpful in identifying other
symptoms/disorders that might occur more frequently with Fibromyalgia, but have not be
acknowledged by the medical community to be connected to it.

I also think that it would be helpful, but I'm not sure if possible, to have a symptom filter that
allows anonymity. Some symptoms/other conditions have negative stigma attached to them, and
patients might be embarrassed to mention them. However, it is still very helpful to be aware of
these types of problems as others may be experiencing the same thing. I'm not exactly sure how
this could be executed, but I think that I would find it very helpful if I were looking up a symptom
It's a good site, but sometimes it's a little scary to see what is going on with some people. I'd like
to stay optimistic, and my case seems much less extreme than some, so it would be good,
perhaps, to have a way to sort people by the gravity of their symptoms. I would really like to hear
more from people like me (or better) who have found success. I feel I hear too much about
disability and hardcore pain medication, etc. All very important for those involved but a little
It's a great site and it has confirmed many things for me. I would like an easier way to correspond
to my friends on the site. Such as, being able to send short messages to multiple friends at the
Just grateful for what you all have done. This is the best site out there. It has a little bit of
everything - symptom tracking, support, medicine and treatment data, doctor visit tools.
I'd been drawn to other sites in the past, but this is now the primary site in which I've choosen to
spend my time at a point where my energy is limited and I am having to "cut back."

I have a dr's appointment on Tuesday in which I will be making a decision whether or not to stay
with my current doctor. I am using information from this website on depression and anxiety along
with dates in my calendar to help the doctor understand that my depression centers around events
like meetings were stressful changes at work are announced, two funerals, another office sharing
our office space. He has told my therapist that he wants me on anti-depressants. I now have some
data I can physically hand to him to support my decision not to go on anti-depressants. It feels
love the site, I plan to utilize it more and better.Thank you.
More research posted for fibromyalgia
Not sure how much use this survey is...


questionaires alway pose problems when there is not a "not applicable" or "I have no preference"

As many as half the questions posed so far in this survey are not answered accurately because
none of the answers apply and I cannot explain and cannot proceed without completing the
question. I only have interet access at work and do not use the site much because of the time
issue and the ethical issue. I basically have used the site for general information and to track my
condition approximately monthly. I have never used the forum or any chat room type of site. That
is not to say I agree or disagree or even know if it would be helpful so please take that into
consideration when reading my answers. At the beginning there were choice about applicability. It
might be better to set this up so that people who haven't used whole sections of the site can tell
you that. However I do appreciate the sections of the site that I do use and as my condition
Some of the questions were hard to answer because I have had this disease for so long and have
been treated with this disease for so long and have a very good informed dr that a lot of things
and meds that they have for this disease I have tried before they actually started to prescribe
them for this disease. Can I say guinea pig?(lol) Not really but I did try alot of meds they use now
Suggestions. International drug name options.Options to add your own symptoms, treatments,
medications.A section to record vitamins. Options to add your own.A section to record the
weather, and symptoms that arise relating to the weather, and a graph that can show how the
The Forum is a little awkward, It could use more categories for specific content.
The medical/treatment profile page with its graphs is very confusing.I don't need to see all that
The site is quite good as it is, and the fact that administrators are open for changes is a very
positive aspect. This questionnaire, however, was lacking either a 'neutral' or n/a answer. Not all
questions could be accurately answered to the negative or affirmative, whether weakly or strongly.
The two things about this site that helped me the most were the medication usage information and
the symptom information. It was very reassuring to see that my meds were in line with the norm
and even more so that my symptoms weren't random or imaginary.

One thing that would be helpful would be the ability to sort through patients by discriptors in their
bio., eg "single mom", "retired", "grandma" etc. because these life situations really effect how we
There are many people on the site. I get told "Do not place this kind of information on this page."
Or, "You placed this on the board, and it is wrong. So, I ask you, this???What can I say on the
This site has been very helpful. I feel like I am not alone dealing with this complex way of life.
This site is very impersonal. IT is cold like a hospital or medical facility. If you want people to do
well and use this site more, you should make it more inviting like other networking sites because
after all; this is a networking site...the only difference is that its a medical netwroking site. Take
your example either from nin.com or myspace.com for warmth and feeling.
This site seems a little too clinical feeling for me, I've never felt really "at home" here. If you go to
the invisible disabilities site, you'll see what I mean. I believe you have worthwhile info and I will
come here for that, but for chatting and forums...the other site just feels more comfortable. Ouch.
This survey has helped me think about what might lead me to use the site more. I think it may be
the ability to do more online chatting, and more real time response. Posting responses and
following ongoing info isn't enough for me right now.
What would make me use the site regularly is being able to record symptoms multiple times on a
given day in order to be able to track trends in how things change in a day rather than over larger
periods of time. My primary use for this site is as symptom log and finer granular control is what I
most want to record (I have enough friends with chronic pain illnesses that I don't need this site
for social support). One thing I'd adore having would be a body diagram that I could click on to
Where do we find the print out ability to take to our doctors. I have shared this site with my
support group. I like knowing, I can update whenever and see where I am headed or what might I
Your site is too complicated to use. I very rarely access it. No one tries to write to me even
though I have had FMS for years(about 15) and have been on every drug in the book. I couldn't
even find half the forms that you were talking about. It is a mish mash of charts and graphs with
no explanations as to what they mean, and I am pretty intelligent, so to the average person, it
  I research patients treatment to help their conditions. I learn something new and I try out the
new treatment, like supplement vitamins, etc.
...
a lot of this survey did not pertain to me I am not new to my diagnosis and seems I cant get my
doc to sign on with me :-(.. I have sent several e-mails and asked in person several times. dont
know if they are too busy or just dont care. we all know some docs see us as a pay check and
all is good
Can poeple be more friendlier and just be open so we can help each other better.
don't change a thing, this is my favorite site!!! ps my mom sent this site to me, to help, she was
right, thankyou so much !!!
DON'T CHANGE, I LOVE THE OVERALL LAYOUT
Don't like the facebook idea, but the moderators don't seem to care that they leave us open to
FOR THE MOST PART I WOULD LIKE TO SEE THAT OTHERS RESPECTS ONES DECISIONS ON HOW
THEY WANT TO LIVE THEIR LIVES..IN REGARDS TO RELIGIOUS BELEIFS, SAME SEX
RELATIONSHIPS..SOME PEOPLE HAS HABITS OF TEARING OTHERS DOWN IN REGARDS TO THESE
SITUATIONS. WHICH IS REALLY NONE OF NO ONE ELSES BUSINESS. BASICALLY THE SMART
GESTURES AND DISRESPECT OF OTHERS NEEDS TO STOP. OTHER THEN THAT I FEEL THAT PLM
IS A VERY INFORMATIVE SITE WHICH PEOPLE REALLY NEED TO FIND OUT IN ORDER TO SURVIVE
Have a doctor explain to these people what a viral load is instaed of other that are not sure---

Have a doctor explain to these people what a CD-4 panel is instaed of someone here trying to tell
someone else

I am glad someone stept up to the plate with a place like this , you dont have to be Gay to have
HIV and makes me feel like I can come in here and ask anything to the group and get some
answers to what I have in mind , just feel there should be a site where other HIV peeps can go
and chat even meet up for dinner or for friends , which those are few and in between
I am having and will continue to have a "gracious" time w/ the Patietslikeme Forum indefinitely. I
appreciate every aspect of what the Forum has to offer, feel well informed as I enjoy sharing
I am impressed with your services and hope that others may take advantage of the information
about my relatively unique problem (condition).
I am really pleased with patientslikeme!
I came to Patients Like Me because I was not happy with the other sites that seem to clump us all
together. It has a social side with a medical side. This is a great venue when I have questions.
I don't have any at this time.
I enjoy the site just as it is. It has helped me in so many ways. I don't know anyone personally
here with HIV, so I felt like I was a misfit and like people looked at me like I am HIV. This site and
these people have helped me to cope with the looks and opinions better and has helped to build
the self esteem that was nearly destroyed. I believe in God and I put my trust in him always, but
I believe that he can work through people to get his point across, and there are some God sent
I find that other sites have a app. similar to yahoo messenger that allows you to interact with
other hiv patients in real time, it is alot more helpful in coping with issues pertinent to hiv
I find the social support aspect of PLM to be invaluable. I pay attention to my changes more
carefully and find a lot of useful information from others regarding to emotional support required
to make it through the day living with HIV.Thanks,
I had trouble answering the questions on this survey because they really didn't apply to me. I
have been living with HIV for over 20yrs and am extremely well informed and have an HIV
specialist as my PCP -I didn't join PLM to learn more about my disease or to gain information that I
could share with my providers. I joined it because I was curious about it and because I was hoping
to meet other long-timers like myself to interact with. I was also thinking I could help others who
are more recently diagnosed, and in fact did have a months-long exchange with someone who was
very depressed about his HIV-infection and was able to give him some support when he needed it.
I have always had a great relationship with my dr and have always been in control of my
I have no suggestions, this is a GREAT website.
I have nver use this site for anything other than social talking and contacting with other who are
I haven't really used the site that much except to enter my labs so far. It was very interesting to
see. I'm glad to have the graphs. Most of my answers of "disagree" was just from the fact that I
haven't used those features of the site yet. They might be helpful, but that was the only answer
available for those particular questions in your survey. Thank you for your work! :)
I like patients like me because it gives me an opportunity to meet other people with HIV and to be
open and honest in talking about it. It's such a taboo in the rest of the world, and it's easy to feel
like you're alone. It's nice to know I'm not the only one
I like the way it is already.
i like the way things are run,,,i just think there should be more caregivers and doctores on here
giving more advice on herre,,,but overall im very happy with it
i like the web site
I like your site alot
I miss seeing more europeans, esp norwegians and swedes, and asians using this site.
I really enjoy this site. The feedback I've received from other members has been the best!
Everyone is thoughtful, helpful, and compassionate. I'm glad I found this site! Thank you!
I really like the site. One thing, I still don't know the sub-type and I guess some info to help alot
of us figure that out would be good.
I recommend Patients Like Me to others because I think its great, progressive, helpful and most of
supportive. It feels great to belong to a community. I need this connection that PLM offers.
I thank God for patientslikeme. It's a great network of friends you never knew you had! They're
I think I tried to search for people in my area and did not know how to do it or it was not there.I
hope to get more involved in the site and learn more. It was suggested to me by another member.
I think PatientsLikeMe works very well this way. If there is something could be improved, I don't
know right now, that is great for me at all. Well... if anything was written in my native language
maybe I would enter the site more times, take part of the Forum more properly, but I don't think it
is the case to create a PLM in other language like Portuguese... how many Portuguese speakers
I think that is site is very good for me, as well as others. It has helped me understand my
condition, less fear, and some of the information is priceless. Thank you
I think the site is a great place to interact and learn from others about treatments, symptoms and
even emotional and mental condtions associated with HIV. I have formed some friendships across
the miles that I have come to value. I do not feel judged or apprehensive about sharing with
others who have the same condition as I. I just have to be prudent about what and how much I
I think the site is great I need help though because of destructive behavior due to my diagnosis
and having Aids in 2004
I use PLM mostly as a way to keep records of my numbers/treatments. Initially I found it very
helpful to connect with others to compare side effects, exchange information about treatment
experiences. I log-on less often now, as my treatment is going well and I'm very consistent with
I will get back with you later on this question.
I will use this site more often.
I would like to see more input from doctor or research that is going on. I get all my information on
this site form reading others profile, which has been very helpful to me, but far as knowning that
there are others will the same thing that I have, and we are able to give support to each other ;
this is all i can get from this site. If there is more information here maybe I don't know how to use
I would probably use this site more if my condition changes. but currently I'm experiencing what
I'd consider pretty good health.
I'd like to see an interactive community for members. Strictly platonic in nature...a chat room to
connect, support and share ideas.
I'd like to see more interaction between members as real life friends, support or even lovers. Not
to make it a dating site but to add that option.
I'M GOOD THANK YOU!
I'm not taking any meds yet becaise my VL and T cell counts are still good so its hard to be part of
this web site. I don't think you should use my survey because it may seem that I feel negative
about it but the site really does not apply to me a whole lot yet.
I'm pretty happy with what you guys have created here. It's the best site of it's kind on the
I'm really kind of out of touch with it these days. I have no suggestions. I think the forum should
be better regulated. At the time I left there was nothing being said about illness or treatment or
stigma, it was all god, god, god. So I quit surfing the forum everyday. But, like I said, I don't
have internet right now anyway, so it doesn't matter to me at the moment.
It would be nice if there was a way to sort Non-Progressors and Slow Progressors.. and share that
information.. as this is an important area for potential vaccine.
Medcial wise other than seeing charts etc for myself has not made much of a difference, but I also
have a strong medical background. I use this site mostly to connect with others.
more information on other conditions assocuited with hiv
more social interactions
N/A. I do like to track my treatments and my levels which this site makes it very easy to do.
Narrow search to view those in specific cities
Nothing at this time. I have entered my test results for charting and reviewed what other had to
say about the effects of their treatment
nothing that comes to mind at this moment
Patientslikeme is by far the best site. I am concerned about security, and I know that it is being
addressed. Too many quacks have joined, but I don't know how to do it better.
Perhaps a more detailed medical definition of what the treatments do and what is happening in
pictures should be a tid bit larger, a place where we can exchange files (patients not only talk
PLM has changed my life for the better. Emotionally, PLM has brought me back to life. I had so
much anger and resentment, there are so many people on the other site, my voice was lost in the
crowd and so many times I felt brushed away. I found PLM as I was looking for something else.
Looking for possibly finding something better and I did. The Forums helped me help myself. The
caring, attention, advise and the support have made me want to change from an angry bitter
person to someone who has come to terms with self respect and self love. The tools on PLM are
absolutely wonderful and helpful. After 16 years of self loathing, PLM has made me see life in a
PLM is a great support site with a world of knowledge. It is great to be able to communicate with
others in the same situation.
Reduce the number of times that the site sends "Update Your Profile" reminders. Most of us who
have been living with HIV/AIDS for any time, have the necessary work done every 3-4 months,
not every 2-3 weeks. When I get too many reminders it makes me wonder just how much the site
really knows about the day-to-day lives of long term survivors of HIV/AIDS.
seems everyone is worried about protecting our privacy
sorry i couldn't be more helpful with regard to treatment questions...

i am not using anti-retrovirals yet and therefor do not search the forum or other means to inform
myself about side-effects etc (irrelevant to me at this point)
unfortunately i don't have a printer so i don't share my PLM-data with my healthcare team either(i
did mail the link to them once but i guess they weren't interested?) i'm very happy with the care
they give me and i'm very pro-active on staying informed of new developments, mostly info found
outside of PLM (internet, newsletters etc) i keep meaning to use PLM more than i actually do,
maybe the lack of 'european feeling' to it (local users/patients) is a reasoni know quite a few hiv+
people here in the netherlands who i stay in touch with directly so maybe that also explains my
lack of need to use PLM more?
the forum on here should be more open , or should i say more like speeking to the other in a chat
room, not a forum.some ppl tend to type there words more openly in a forum, and when they chat
in a chat room, they can it private and be more open about how they feel at that time.i have ran
hiv support groups and i feel, thats a very important tool! it seems like the hiv chat rooms is not a
chat rom anymore and there is not alot of support likr there use to be.
The sight is alright. It's just when I signed up. I thought it was an H.I.V dating sight. Even though
it's not. The sight is still areal great place to meet people.
the site is fine just as it is - no need to change anything
The site it great and it helps me to read about different situations. This is new to me and i have
already learn a lot. Also it has a lot of informative information.
there are none just want to say thank you for being there as an outlet for me
there really are none, You are doing a really excellant job, Thank You.
This site has been very valuable in communicating with others about side effects and treatments.
Actually, this is more of a support group for me, since I have not divulged my HIV status to friends
or family. I have actually changed medications, on the advice of others, on this site.
This site is easy to navigate, etc. ... very good site over all.
This site serves different purposes for each person that uses it. I know why I am here so there is
nothing needed to tailor make my experience better. It is what it is for me.
This stie has shown me that I am not the only person that is that bad off. I have learned that I
need to be greatful that I am where I am (with my life & illness), as there are other worse off than
me, and are able to continue with strength and dignity.
too new here to offer constructive observations.
Try to make the website more interesting with better style and have more people and maybe some
When I first joined the site I thought it was a very good site but it seems that here lately there is
way too much crap going on for me. I live in a small community with no access to a support
group and that is what I wanted from PLM, but personally I find that there is much nonsence going
on. I also try to reserch some of the different problems that I as a woman am having due to the
medications and change of life but there is not information on that. The biggest prob I am having
is the depression and seems like every one else is in the same boat as I am and personally I just
cant handle all of the negative stuff that is going on with the site now. It seems that the site is
more of a chat site and not so beneficial as to the actual medical aspect of living with hiv and dont
You can do free marketing on sex sites like manhunt that geo target people. Just an FYI
0 Don't use it enuf to see what's goin' on with it.
a journal page
Add a "tag mood" feature so we can remember why we were feeling good, bad, or in between.
After logging on multi times daily I have come to the point where I rarely log on to PLM. I feel I no
longer connect to the community because of the younger group and their posts.
Although the site has not helped me much so far[I also haven't used it much],I am hoping it would
be beneficial to me in the long term.
Be able to text my instant mood.
Do not ban people from the site, we are MI afterall, and all have peculiarities due to our illness
and I think many are disgruntled due to autocratic heavy-handedness. Perhaps there could be a
'temporary hiatus' imposed with the condition like three strikes and then you are out...Also have
some imput from professionals who are also MI on your staff, (they do exist) and would be more
as an advocate for the patients here and establish more considerate relations and
doing great!
Don't know??
Giving time to use your website seems to be a problem for me. Too many things to do not enough
Great site. Would like the rating system to be a little clearer.
Great work, PLM. I appreciate the search, but I wish it were a bit more robust. I know you're
adding tags and such to try to improve it. Perhaps, an additional search page could explain how
to search, give tips and demonstrate ways of gathering data on experiences. This is a functional
tool, but one that would have even greater value if it had continued improvement. Thanks.
I already had good care and knew about my condition prior to finding this site. I like the site and
the fact that I can track my moods. Thank you.
I am a "veteran" of treatment. My condition is 15-year diagnosed and 90% under control through
medication. I participate because my medical experience is like a "vote" that some or most
Bipolar disorders can be managed through good medical intervention. I want to share that fact
with others...especially those who, like me, earlier thought that I could fight it myself or could find
I am not a frequent user. As an IT person, I think you have done a good job in keeping the site
user friendly.As an IT person involved in Healthcare IT Interoperability, have you considered being
able to exchange information with PHRs and EHRs? (standard exchanges have been defined).
I am still conused about reading the results, especially the symptom reports. I'm not sure how to
I am very happy with much of the site. I like the ongoing organization of symptoms/side effects
to eliminate duplicates, and I like that I can filter off-topic chatter from the forums.
I appreciate the reminders to complete surveys. How about reminders to take medication? That
is probably one of the biggest stumbling blocks people with my mood disorder have. An email or
I been so busy after I joined that I hardly have the time to go through emails let alone anything
else but I do try to get to them at least 2 times a week sometimes more....with everything listed
above and your site also, I have learned a lot more about my disorder and have learned when an
episode of hypomania or depression is about to occur and have learned more on how to deal with
it when it is here....and I have learned that others have the disorder as well and how they deal
with their episodes...all in all I am always willing to learn more and see if I can put it to use in my
i beleive my problems are hysterectomy related. the panic attacks are from lack of hormones. also
the weird pain i am experiencing sends me into panic...
I can`t think of anything at the moment.
I don't really know
I don't really use the site to network. I do use it occasionally to track my condition, but don't find
it helpful to frame myself in this way continuously, despite the fact I have a chronic illness and
I have Crohn's Disease, and this really affects my mental health as well as my physical health. I
would love for Parients Like Me to start a site that dealt with Crohn's Disease. I believe that it
would help me, and others, immensely. By the way, I really like the way you've changed the
I have met one close friend on here who has gotten me through some tough times
I have not had any significant connections with anyone here. The site has been a let down as
have many of the mental illness sites I have tried.Trust is almost impossible online especially with
i have tried to have others with my condition to respond even dr and you have been the first i get
pretty busy with my different schedule at work
I haven't used this site enough yet, to truly analyze it well. I hope to use it more as time moves
I joined this site when I was in a real "funk" and my meds were being changed. The med I was
being given had a leaflet in it suggesting this site. I don't really feel like I have much in common
with anyone here. Everyone or most everyone seems to constantly in a "mood" and have been
through so much more than I have. Sometimes I have to stay away because of all the problems
others are having and it affects my mood because I feel so bad for them. Or because sometimes I
think people are "milking" it for sympathy. We all have our problems, but I have found it
I like that I have found a place where I can talk to people who understand what I'm going through.
It makes all the difference.
I like the idea of this site, though I'm not sure how helpful it's been. I have OCD and I haven't
seen too many folks on here with specifically with my condition. Still, I think it's important to be
out there about it and be available as a friendly supporter and resource for others with OCD.
I like the new changes made this week to PatientsLikeMe, especially the addition of a neutral
feeling on the daily mood area.
I like the site as is.
I love the new reminders to update the profile - the profile of where I've been has been the most
helpful to me. I'm coming up on a year and would like to see how I do over the course of 12
months and see if there are any patterns I should be aware of
I love this site!
I might use this more even when I'm doing well if there were a bit more gradiation in the scales.
I mostly use this webpage to keep track of my mood, which gives me a sense of control and a
I really love PLM and I very much appreciate all those who have helped create, maintain, and
improve the community. I do think the Forum could be better organized into subgroups, because
there are a lot of threads on there and you can sometimes get "lost" in the midst of them all. Also,
it would be nice to have a formal PLM chatroom, although I do use the one that is run by members
I really wanted a neutral option because sometimes I just don't feel "good" or "bad" but I noticed
today that there was one! Thanks!
I repeat what I said earlier. Also I would have been more inclined to rate my mood if there were
better options, eg "okay".
I think it would be interesting on creating some way for people help each other also on individual
bases; also i think it would be important to deliver easy to find explanation about how to improve
everyday life; support virtual meeting groups (typed or audio chats) to help for people in crisis -
at least for hearing them and sharing pain and experience); suggestion and comments about
alternative theraps that could be done together taking medicines. We also could have access to
compiled side effects and we could have a tool to chose and perform comparison between drugs,
I think this moods conditions community is extreamley beneficial to those of us with mental and
emotional disorders. However, I was probably not a very good candidate for this questionnaire
because I have not yet been diagnosed and am currently not taking any medications. I have not
yet reached out to others but I have replied a few times to comments in my inbox. I know that I
will try to connect with some of the members when I feel the time is right. Until then I will try to
be caring and sensitve when I see new comments or questions in my inbox. Hopefully my reply
I would like a daily monitor where I can personally address how I feel due to circumstances which
come up in my daily events so as to compliment my moods activities monitored.
I would like to be able to chart when I have my period.
I would like to see a place on the site where I can write in a journal. I have to go to my other site
to do that and so it becomes tedious going back and forth. All in one site would make things
I would like to see a seperate forum for each condition
I would like to see less "chatting" on the forums and more exchange of information. I do,
however, see the value of the social aspects of the forums for many of the users of the site.
I would like to see more mental health caregivers opinions and suggestions. Just some response
to the extensive information I have put on the site....some feedback.
I'd like to get back to using this site more often, I think it could be a valuable resource, but the
lack of privacy is a concern
I'm not really sure
I've been a member of Patients Like Me for almost a year and I've enjoyed the experience and will
always continue to belong and contribute when I can.
It would be great to have a listing of clinical trials related to mood conditions, and allow
participants to discuss these trials with each other.
less nonsense chatter in the forums
Love to be able to add themes or graphics & make the forum fun as well as helpful. I find the
mood charts a bit hard to understand & gets me confused a bit.
More cowbell!
My depression is somewhat mild. I have cirrosis in relation to Hep C. In order to start my
treatment for the cirrosis I had to have an evaluation to see how stable I am and if I would be able
to withstand the Interferon/Ribavarin treatment without suffering a more severe Mental problem. I
saw a pyschiatris and was told I would be able to take the treatment.
not real sure at this stage of my using this site,so far so good, thumbs up for all the care you and
your staff reflect to patients like me!!!!
Nothing at this time, I do like that I am reminded to update my mood information!
Of hand I don't know. The site is REALLY good and I'm so glad it's there.The only problem I have
is connecting and talking to the "youngsters". They seem to have their own language and other
problems unrelated to me. I just read and learn sometimes. I respond when I want to
On the whole this site has alot of potential but suffers in a few areas (these are not complaints
though - mere suggestions):




1) There is a lack (well I shouldn't compare) of patients on this site...its "clientel" is small, in my
opinion. But then again I am somwhat biased here because I am a MAOI user...a category of
medications that is on the verge of obscurity and so distant in the past that many dr's dont even
use them anymore...so your site has only a small population of MAOI users. I've attempted, and
this gets into the next point mabye, to bring together "my people" (MAOI users), so to speak, in
one forum category but participation is minimal. Is there a way you could "drum-up" enrollment. I
did connect to this site via a pharmaceutical company website that distributes "Marplan" - your
link was there (I forget the name). Do you think it's possible to have a link to your site on say
Pfizer or some of the other "big players" in the industry? I know this may be difficult...these are
"fat cats" and would probably have little interest in a relationship with you but I dunno...worth a
shot? If it works you will certainly see large increase of patients...as many patients seek out as
much info as they can about a med they use and they usually start at the pharmaceutical company
website...seems logical.




2) participation (probably not something you can do much about as a moderator but who
knows)...seems like patients have difficulty in coming together as a group to help discuss and
support eachother as a whole. They much prefer to continuously post seperate forum topics, follow
their own personal forum threads/topics instead of getting involved together as a group that
shares issues and experiences...in my opinion a better means of support dont you think? It's a
good idea to have people vent or run a forum "diary" but again, like dr-bob.org, suffers a bit from
overposting and new patients to this site have to search and search and read and read to find
what they are looking for. I know that you can search and tag forum topics but to me this seems a
little clumbsy again, but thats me. I don't know how you could bring participation up...perhaps a
One one of the questions, there is a correlation between how informed the patient is to how much
the patient relies on their doctor. I am very well informed, but trust my doctor implicitly and
realize that I didn't study psychopharmacology and do not have the experience he does. Therefore
I defer all decisions about my healthcare to him, and feel the question does not allow for that
possibility.




I have added many suggestions to the "Site Suggestion" thread. However, in terms of the
functionality of the site, I would like to be able to keep track better of the members that I have
built a relationship with. This might include seeing which members whom I've chosen as close
One thing is that i am on here more for my fibromyalgia and chronic pain, back pain, chronic
fatique syndrome, but on this site I am only diagnosed as bipolar and the questionaires are always
about my mood, not specific to my pain and fatique levels. I have tried to change it but cannot
Patients like me is very good in that it helps people who are depressed. It is sometimes limited
though in it's narrow understanding/assumptions about mental illness. These being based on a
system that at one time sanctioned lobotomies and electroshock. Although, psychology has
improved, it still has a long way to go. Psychology should awknowlede social factors that lead
some people to be depressed over than others. Like for example there are twice as many women
depressed than men because of SEXISM, poor people are more likely to be depressed because of
POVERTY. In other words, a psychology that looks at social factors instead of attributing
everything to a chemical imbalance, which is to this day unproven. Patients like me is good but it
Please add a menstrual cycle tracker!
please please please change the "treatments and therapies" platform. It's godawful. It's horribly
slow. If you make frequent changes it appears to or actually does lose most of the data, it is very
hard to make dosage changes or loses data when frequent dosage changes are made. It doesn't
handle PRN medications well. It doesn't allow you to track weekly therapy interventions except to
manually turn the treatment on and off every week which (see above) is slow, unwieldy, and
prone to data loss. Ditto for other things with frequent "dose" changes like sleep, caffiene use,
etc. I don't know why it's so horrible, when the symptom tracking platform is so user-friendly and
quick, but it is. I do like the new "neutral" mood choice. Sally Okun, Mo Oakes and everyone else
I have had questions for, are very helpful and pleasant. The messaging portion of the site needs
some work, most notably to allow you to copy your provider on messages you send to PLM (or
allowing you to have more than one recipient at all). I have chosen to not use the forum so much,
because I am a mental health provider in addition to being a patient, and I don't want too much of
my personal info out there, but I "lurk" sometimes and it seems pretty helpful, although
sometimes some misinformation gets thrown around.
Please simplify the graphs/charts - they are too cluttered for the average user
Some questions did not have a "N/A" choice, so I selected disagree if it did not apply to me.
thank you for selecting me to participate
Thank you for this site!
THANK YOU! for finally giving a choice of "Neutral" for recording daily moods. It just started
today... I had written to the site administrator(s) requesting the choice months ago. It's a great
improvement! Some days I don't feel "Good" or "Bad"... just in between...
The Forum discussions really need to be monitored, if there really was a way possible. Things are
getting out of hand in the forum and topic areas...
The only change I really wanted to see has just been implemented - The neutral mood choice!!
THAT'S really the main thing I wanted changed - sometimes you're not in a good or bad mood and
having to choose between the two was very hard at times. While I understand the original
reasoning behind it, the change is great and made me very happy.

Other than that - I belong to both the mood and fibro PLM's and it would be nice to have a way to
combine them? I like the pain tracking the fibro PLM offers - I wish the mood PLM offered the
The people on this site are pretty much my only support, so this site is very important to me.
The site is progressing rapidly since I joined a year ago. I've been generally happy with the site,
but I don't use the forum much anymore since I can't keep up. Perhaps there should be multiple
This is a great -- and very needed -- site. I wouldn't change a thing.
This site helps, I don't always updte it regularlly but it has helped
This site is pretty useful overall but forum can be discouraging as it seems to be dominated by
those who are very ill and/or are in crisis.
this site should not be used for medical guidance of any kind...it is for self help/useage, not for
medical useage...it's a website/forum, and should not be used for medical help ever
Those daily surveys are kind of a nuisance & the grapg it produces is impossible to understand.
To be very honest, I do not use this site regularly, so I can not give a lot of opinions because I do
not know this place very well. The little I have known, looks to me very good.My opinion is that
you are trying to do an excellent work and you are going to improve it.
ur site is ok but not the best.
will be back to the community in some time...
Without wanting to be offensive, I don't find that contacting strangers with my condition or similar
ones is pleasant or helpful. I have enough depressed close friends so that we constitute a little
fruitcake club as we call ourselves, and keep strangers out.
I love Patients Like Me!!! I do not spend as much time as I used to on the site
due to personal time constraints but I know they are there for me whenever I
feel like talking. :)
 I guess because I've had MS for all of my adult life I've stopped seeking out
things like I use to when I was first diagnosed in 1977. Now I'm just living with
it the best that I can; sometimes I think it can't get worse, but it does. Now I'm
fighting to keep my cognitive functions as intact as possible and it's scary. The
next step would be a assisted living facility but I'll fight to stay independent as
long as possible. Can this site help keep people independent?

 Just make sure its m.s. and not a infection or something different -just dont
assume its m.s. Love the site!!!
..I enjoy any MS site that opens communication between MS patients....and
sharing of issues...
Being that I'm a long-term MS patient (34 Yrs.), it's impossible to guess, as
was suggested by this site; dates of treatments, treatment changes, &
exacerbations. I feel that if I was allowed to enter the month & year of certain
event's such as mentioned above, my profile would be much more accurate &
therefore more helpful to those viewing it & seeking information. The informatin
that I've been able to provide thus far is quite incomplete because of the date
in time requirement on PLM as it currently exists.

better instructions on how to use the symptom chart....
Could you change the time period for the chart options from either 6 months or
all, to a continuous strip? Some period (6 months, 1 year, 2 years, 5 years -
patients choice) would be automatically displayed, but the historic data could
be available to pan back over. IT'S A GREAT SITE - NEVER THOUGHT I'D BE
SHARING MY DETAILS WITH OTHERS AND GETTING SO MUCH BACK FOR MY
EFFORTS! HOPE I HELPED SOMEONE ELSE TOO.

Fortunately, I am currently what my doc refers to as "near normal." I have not
had a relapse since my diagnosis and start of treatment -

about 1-1/2 yrs. ago. I know that this may change at any time. It has been
comforting for me to know that the utilities and support that patientslikeme
offers are readily available - for the past, present and future.

Good to find others in the same situation as myaelf. Talking about Medications
lik LDN has been very helpful. As long as we keep andy corporation out of this
we are going to be ok.
have a faq section with professionals that is dedicated to treatments that are
often prescribed for long term msers eg steroids for relapses even if u take a
disease modifyer or what is done for the ms hug etc.
How about a very compact 30 day at-a-glance sheet. where we can note our
daily symptoms and severity, this is a sheet I would take to the dr. with me
monthly or quarterly.




I see my dr. every 8 weeks...and so many symptoms come and go...I wish I
could remember them all to give her accurate reports.

Thank you...Catherine Chaffin
I am fairly new at using the site and haven't taken the time like I would like to
on it. But I am excited to know that it is there and have found it very valuable
for what I have taken the time to use it for. I especially am looking forward to
the fellowship with others out there dealing with the same thing as me.

I am so glad I found PLM after my Dx. The other members and the support
members are great and really give great info. If im just having a bad day I log
onto PLM and I feel better knowing I can talk to others who know what I am
going through. Great website. Thanks!!
I attempted to use the form printed here for my Neuro. I felt that he was
unresponsive and uninterested. I wish that I could go back to my first Neuro, as
I feel she would have been more involved in the information provided. I
continue to seek a caring provider.
I could not figure out how to download a photo to my profile.
I couldn't get through the tough times without this site.
I don't feel the site is that user friendly and thus my hesitation for not going
there. I feel I could not adequately answer the questions as I had not been
signed in for some time. The time required to keep mtyprofile updated is a
factor. I think the web site is an excellent idea and do not mean to undercut its
effectiveness. is just that it requires more time than I have energy to devote
right now..
I don't have a lot of time for PLM, but I'm very glad it's there. . .it's a huge
help.
I enjoy reading other people's opions and thoughts. I learn alot from that.

I feel I've had MS for long enough and am stable enough and have enough else
to do that patientslikeme has little to offer me, and I don't think there are
enough patients like me for me to have much to offer them.

I go there more for legal questions, than medical information.
I have been completely happy to meet others that are going through the same
sympoms and hear how they handle it. Communicated with people who are new
to the site and don't know how to handle having the disease. Just writing back
and forth I can stay more positive which helps other people.

I have enjoyed being a member of PLM and have found the treatments,
symptoms and forum sections all very useful and informative. At this time I
can't think of anything that should change on the site.
I have found a sense of community and hope at Patients Like Me. Even though
I don't sign in and record my information as often as I should, I do visit the site
often.It would be nice if I could get my family to do the same.

I have had the worst doctors, though one was fantastic... however, he passed
away after Hurrican Katrina. I feel like I'm adrift in this disease. But, I'm well-
stocked and I have a supportive first mate (my husband) and great yeomen
(my kids). I do not have supportive family outside of our niche; they are the
type that bond to their "Christian" brothers and sisters before blood relatives...
or have invested in subsequent marriages and the kids from that spouse
(ironically, my step-sister was diagnosed with MS; talk about irony??) I wish
the site was easier to use... so that it could become part of my daily routine. I
am a college instructor and very active in my community, so it's difficult for me
to add a peripheral interest... even though it's for my well-being.

I have not utilized this site as I should have. I think it is a very helpful site. I
feel more connected to people who understand me. I plan to use this site more
often in the future. Keep up the Good Work!!!
I have really enjoyed all the functionalities of this website and it is like a
security blanket to me... thank you
I have what could be considered a mild form of R/R MS & no longer take
medication. 1. Because I was doing well & 2. Because of the cost - Earlier, so
much of our monthly income was consumed by health care costs & now we
have a critically low income. Thank the Lord for Medicare!

I just wish it was like it was when I joined back last summer. There are SOOOO
many really nice people who have left, or just disappeared from here. There are
soooo many new people it IS hard to keep up and to get to know them. I have
been busy with my personal life, and don't get here too much. I am a lone
support group leader since my co-leader's resignation, so that leave me VERY
BUSY. It just leaves your heart empty wondering about those who you got to
know and who are no longer here. Maybe I just can't deal with change all that
well.....

HOPEFULLY, I WILL be able to come and jump in more often. I also DO really
like the reminders, from you for this and for the reminder to update my profile!
Those are most appreciated! Thanks for being here! I get lots of info here from
the forum to take to the group such as inspirational stories and new
medications and research info. Hope my answers helped! Contact me again for
the NEXT survey!

I know it's not the sites fault but sometimes I'm afraid to get in on a
conversation because I feel I've been made fun of or put down for my
comments or contributions. I'm always respectful of others and I'd like the
same. I just had to get that off my chest. Other than that I love the site, but I
don't get in on conversations anymore. I just read and sometimes learn, it's
kind of clicky.
I like your site. Here are a couple thoughts:

I've always thought it would be good to have an online 'Injection Log'. I use a
paper book provided by Teva Neurosciences / Shared Solutions and this could
be a big draw for me.
Updating treatments is clumsy and time-consuming, so I update it about once a
month. I'd do more if I could rip through it in minutes (I'm a Web Manager, so
I can move quickly through Web Apps in case you're wondering about my PC
competency).
Where I am right now, I want to talk about cures, treatments, and
epidemiology. Perhaps splitting the boards entirely could help:
chatty/emotional section vs. irrelevant life vignettes section vs. diet section vs.
hard core science section - right now it's a bit much to wade through.

You may also want to get experts to preside over 'Topics of the Month' - not a
section moderator.

Bring in Dr. Terry Wahls, Montel Williams, or Ashton Embry for a month. Get
them to post a weekly board topic, or host a webinar about their approach to
MS.

I get frustrated with this site because the users (in my mind) aren't open to
new treatments or experimentation. Many of the threads seek emotional
support (which is crucial), but it starts to crowd out the more hopeful
conversations.
I love your site, I don't use it much as my brain is often foggy, but am starting
to use it more.
I mainly use the site to track my symptoms and medication. I go to the forum
occasionally but dont spend much time on there due to how busy I am. I think
its a great site and it helped me alot when I was first diagnosed and was
needing tons of information. Everyone is very helpful and friendly. I wish I had
more time to spend meeting new people that have the same issues as I do.
Thank you!!
I really enjoy and use all the tools available, but often feel alienated by the
forums. There is too much snarking and backbiting to make me feel at all
comfortable there. As a result, I mostly use the tools and try to stay away from
the forums.

I really appreciate all the hard work that goes into making PLM both useful and
easy to use!
I THINK ITS A GREAT SITE.
I think the site is wonderful.
I think you are doing a great job. I like how the forum is monitered, It helps
keep everyone focused!

Thank You for providing such a web link, where everyone can share and learn. I
have definately learned more hear than any where else.
I think you have a good site that is of service to many people. I've just realized
this kind of thing doesn't fit me personally.
I think your site should offer information to people with ms about getting health
care for people who dont have insurance and cant go to a doctor to get
treatment, shots, and meds they need.I cant treat my ms with the injections I
need.I no longer have insurance due to going through a divorce I lost my ex
husbands insurance when we divorced.
I use this site only to put my conditions down. I dont use it to meet people
which I probable should.
I was just getting started on this site when my computer crashed so that is why
I really could not answer some of the questions--I did not get information about
other treatments that the patients could suggest. I have progressive MS and I
wanted information about my walking because my son is getting married and I
wanted to find a way to make it easy to walk down the aisle instead of using
my scooter.
I was not a good choice to participate in this survey since I haven't used the
site, other than to update my info. I put "agree" in areas where I couldn't say
that I haven't used it.I think it's an excellent idea, and I intend to participate
but I've been very pressed for time and haven't had the opportunity to figure
out how to navigate and use the site.
I wish that we could see other parts of the forum, and not just the parts for the
MS people.
I would enjoy a news area where this site aggregates news stores for my
disease.
I would like a way to connect my health care provide to this information so that
it becomes part of my medical chart. I believe strongly that I plan a role in my
medical care, and I think this resource is a great way to reflect that with my
physicians. I would like a better way to reflect the good feelings - not just how
bad the disease it getting. How are we feeling mentally, more positive. At first
when I joined it seemed different than other groups out there related to my
chronic condition. Now it is more of the same, negative fear based chatter. It is
important to have a positive view and finding ways to reinforce that on this site
would be helpful. I would like to also see researchers utilze this as a tool - and
get involved with the patients more. I think you could find a way to charge a
fee even if small to increase awareness and provide more self directed care. I
believe that this is a move toward people taking charge of their healthcare and
the future of medical solutions, cure for disease. harnessing the power of what
is happening and showing how working together can result in a solution.


I would like to have a new orange braclet from the ms society to help suspport
our cause, but you can only purchase a bag of them for several dollors. Would
anyone be interested in get some and putting them for sale here. I only need
one. Not a full bag.

Thank you for putting this program together. I have been able to make some
really good friends, that understand exactly how I feel.
I would like to know how I would know when I am having a relapse versus
sumptoms
I would like to see ;A chat room, Upcoming medicines, Dr explanations video




I would like to see an actual reference of collective results on CAM therapies
used by MS patients that have been posted at this site. I would like to see the
results used as a basis for approval by the FDA so that CAM or natural remedies
could one day be covered by insurance companies. I have had a lot better
results from using essential plant oils than I have from using synthetic drugs
that are covered by insurance companies. It is a shame that what actually
works for me has to be paid for all out of pocket.

I would love a list of hoghly recomended excellent docs in my are of Redmond
wa. i AM ON MT 4TH NEOUROLOGIST, THE 2 PAST DIRECTORS OF EVEGREEN
MS CENTER LEFT SOON AFTER I HAD VISITED WITH THEM A FEW TIMES. i
REALLY LIKE MY LATEST DOC FROM MS CENTER, BUT HER MAY NOT STAY, HAS
BE FILLING IN AND IS THE SLEEP EXPERT AT EVERGREEN.HE IS GIVING ME A
SPINAL TAP, IN HIS OFFICE ON TUESDAY. yIKES THE LAST WAS IN THE
HOSPITAL. sHOULD I FEAR AN OFFICE TAP?SO IF YOU COULD RECOMMEND
ANOTHER EXCELLENT NEUROLOGIST IF MINE SKIPS OUT ON ME AGAIN, I
WOULD APPRECIATE IT.


I'd like to see the forum be controlled somewhat. When I first joined within the
first week I saw negatives about my state, my age and support groups. Three
things important to me. About a certain member, too. I really don't want to be
in a fight so I haven't participated much in the forum.

I'm glad for PLM forum ,when I start a new medication and I want to know what
to expect and just to hear new information about my condition, the only thing I
have problem with is that their is a lot to updated new medications and
updating your porfile--for me is very exhusting to do- I think I need to
understand it better..
I'm very well informed about MS. What I find most useful on the site is tracking
my symptoms over time and recording all doctor visits. The doctor visit page I
find somewhat difficult to use: not simple and intuitive.
I've enjoyed the site, I stumbled onto it somehow starting with Montel Williams'
site. Otherwise, I wouldn't have known about it. The site helps me put my
symptoms in perspective when I realize there are others who are much worse
than me and that makes me feel very fortunate. Thanks.
I've had MS for over 30 years. I'm a "pushy old broad" and have always been
highly involved with my physicians, asked a lot of questions of them, and made
my own decisions. I like PLM for keeping up with new things happening with
MS treatments, but usually do my own research and don't rely too much on
others. I am a peer counselor for the MS Society, and when folks ask for
advice, I enjoy sharing my experiences, and those of others on how to cope.
I've recommended this site to many of my friends & family! & I love the
improvements made that make things easier to fill out! Makes it so much easier
on my brain that has trouble understanding things. 1 suggestion is to make it
easier to go back to the pages we had started on when updating our profiles
w/our MSRS, symptoms checklist, etc., as I had to open things up in new
windows just to be able to go back to the symptom page I was on, as the other
way was too hard as I instantly forgot the page number.

In my fantasy, new people will not be able to post any topic that has been
posted already. To be truly honest, this is the only reason why my usage of the
forums has dropped significantly over the past couple of months. It is extremely
irritating when the same topic is posted by two different people within an hour
of one another. New users are simply not searching the forums to find an
answer before posting something.
in my opinion some of the questions in this survey could have been easily
answered with just a simple yes or no.
It is a little confusing in trying to navigate the site in someways.
It would be nice if patients were grouped by number of affected areas also. You
see someone who has had MS for 10 years with few symptoms and you want to
know what they have been doing and what treatment they have used.

it would be nice to have an easy way to view threads and info relating to a
specific treatment or symptom without having to wade through dozens of
redundant nubs
LIKE THE SITE, WOULDN'T CHANGE A THING.
make it more understanding and fun
most of my "disagree"s were really "not applicable"s. Because my MS is so
mild, I don't spend a lot of time on patientslikeme but i love the concept...when
I was first diagnosed in 1984 it sure would have been helpful. If I had known
then...thanks for doing this...i'm sure it's helpful for a lot of people.

Much of the knowlegde i have I recieved before joing this site. many of my
anweres are based on the fact that i did my owm research and the information
offered here has been redundant or backs up the information already obtained.
If one knew absolutly nothing about Ms treatments or symptom then this site
would be extremly helpful.
My heathcare team doesn't work together! I'm always mentioning information
I've learned from PLM... only to have my providers blow it off as unimportant or
"I've never heard of such a thing" Example: I got a severe tooth infection
caused me to need 3 root canals due to Tysabri infection resistance. My neuro
a MS specialist said, "he never heard of such a thing" even though I had info
from the drug insert given to me by a PLM'er. I fired my neuro...don't have
another...No DMD because of firing my neuro. PLM is great...doctor's not so
much...no respect from doctors on my team regarding PLM info, charts, records,
ideas or facts. I've had a very hard time with health care quality!

never had a relapse,yust continual straggle.

don't go to visit Dr she comes to me,
News about new treatments, therapies and diagnostics, and a blog for people to
comment on the articles.
NO ALL GOOD
No Password or login
nothing,in fact I need to go on it today
Nothing!! Its a great site I've learned so much from it!!
on the Forum, perhaps you could find a way to let us respond directly to an
individual posting or reply, so that a single post might develop several threads.
As it is, the replies are all jumbled up, and if there's a complicated posting it's
hard to follow the thread. You can see an example of this at
http://politicsforum.livejournal.com
PatientsLikeMe is the only website that I visit on a regular basis. It would be
nice if there was a chat room to use if we needed to talk to someone right away
instead of posting topics on the forum.

If you are ever wanting anyone to test a new feature out prior to going into
production - I'd be more than happy to participate. When my employer, EMC,
was launching a new program that we were going to be using, I was given test
scripts to follow and report any errors that I encountered.

Thanks for allowing me to participate in this survey.

Please keep up the good work and continual upgrades / improvements you
have made. This site is really starting to help in my life and treatments.
PLM is a GREAT site... lots of info regarding meds - which has been a
tremendous help for me!Thanks!
PML has helped me in so many ways. The people on this site are wonderful and
really care for one another. It is great to have a place for information and to
just talk to others that understand. Thank you so much for this site.

Site is very nice and helpful, provides unbiased, statistical information
otherwise not available.Please clean MS site from ALS related links and
information.
site's all right
sorry for being not present lately, will try to stay in touch more instead of
staying in my bubble
still too new to really comment on this question
Submitting all of the medical information is exhausting.
Thank you for such a wonderful place to share!
THANK YOU FOR THIS SITE!
There are just so many posts, that they are on the front page for just a few
minutes. I would really like to divide posts into different catagories, OT,
diagnoses, medication, spiritual, chat, etc.
There is WAY too much religion on this site. There is also way too many cliques.
Both reasons I have stopped contributing to the forum and using the MS scores
things.
This is a good site. I enjoy reading the information, however it has not had a
significant favorable or unfavorable impact on me or my condition.
This is a safe and informative site. I LOVE it!It's fun too!
This is a wonderful site that keeps me informed and also helps to motivate me.
With MS I need all the motivation I can get.
This is not a fault of the site, but exploring Patients Like Me is very sobering. I
do feel less hopeful about healing when I see how bad it is and how bad it gets
for so many people. I spend my life getting along as best I can amongst a
world of people who don't have MS. So I am focused on doing and being, and
although walking and balancing etc. are often really hard, I don't think about it
much. I explore Patients Like Me and have trouble not getting worse just from
lowered expectations about getting better. A reality check, I guess. Just not
the reality of my hopes. I DO VERY MUCH APPRECIATE THE SITE. IT IS
BRILLIANT AND IMPORTANT. It's just MS I don't like.

This site is very helpful. But, I do not depend upon it solely for all the
information about my disease, treatment, preventitive care.... I use it as a
resource, as any information should be used, then I make an educated decision
with my physician in my care.
too many "OT" topics in the forum. they are fun but not what I am looking for
on this site
Well, I began using the site on the recommendation of a friend who had heard
of it thru others, stating that it was a good place to make friends and to learn
about my condition thru others. I haven't used the site as often due to working
full-time and not feeling a part of the inner group, I was welcomed and than
nothing even when I responded to topics or attempted to visit with others, it
has been disappointing to me. I was hoping to find some support because the
town I live in doesn't offer support groups thru the MS Society, the ones online
aren't for my circumstanes. I continue to read thru the forums and will learn as
an outsider looking in. Thank you for the opportunity to participate.

You are all great and doing a wonderful job. A world of thanks. xxx katiems

You are doing a great job. You seem to be able to rapidly see what changes are
needed here and you are great about reminding newcomers of all the helpful
bells and whistles you have added to the site. Keep up the good work!
Your survey questions focus on medical profiles, quality of life improvement,
and patient - provider interaction.

I would focus this site more on the patients' ability to build their own profile
and track their progress and relapses, allowing narrative notes by the patient. I
would make this PRIVATE data. A lot of people are very uncool about sharing
medical info on the web. It's a liability.

The 'networking' forum should be a chat room that's available and organized by
topic. It shouldn't be the key focus of the stite.

Provide links to full research articles and case studies, allowing people to
include those links or articles in their Doctor's report.

Please make this site less 'mushy' and more powerful. You have a good base.
It's the focus that is not appealing.

								
To top