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					Dear Doctor




              Dear Doctor
              Do you need a second opinion about one of the symptoms of your M.E.? While we regret that our medical advisers
              cannot respond to individual enquiries, we will try to cover a range of problems in these pages.




              Speech problems                                                                        how to produce sounds, as it depends
                                                                                                     on feedback from sensation.
                                                                                                        CFS/M.E. can also affect the function
              Speaking for only a couple of minutes leaves my tongue feeling swollen and             of the speech control centre in the
              my lips numb. People mention their speech slurring, but not what I experience          brain, much as it can cause ‘brain fog,’
              when I strain to speak for too long; when the body shuts down and you can’t            memory difficulty, sleep disturbance, or
              produce a sound. Not being able to communicate or socialise is incredibly              poor temperature control. This may be
              distressing. This has been my worst symptom for almost a decade now and yet            at the level of instruction to the voice
              there is hardly any literature on this problem.                                        box, giving rise to stammering or
                                                                                                     stuttering. Or it can be at the level of
              Sharon                                                                                 word and sentence formation, which
                                                                                                     can cause word-finding problems,
                                                                                                     jumbled words and sometimes
                                                                                                     spoonerisms (in which letters or
                                                                                                     syllables are swapped eg. saying “a lack
                                                                                                     of pies” instead of “a pack of lies” –
              After receiving this letter, InterAction                        Our principal          Ed). Wider problems with brain fatigue
              asked Noticeboard readers if anyone
              else had experienced speech problems.
                                                                              medical                may mean that the whole process of
                                                                                                     putting together and producing speech
              Shirley told us: “I had major problems                          adviser, Prof          is too much. A migraine aura (before
              being understood – speech was very                              Tony Pinching          the headache) can indeed affect
              slow and badly slurred. Only close                              comments:              speech too.
              family understood what I was trying to                                                    Finally, I should mention that sore
              say. My speech still changes according      Your correspondents outline a range of     throat is of course quite a common
              to energy, stress etc.”                     speech problems, which are among the       symptom in CFS/M.E. This may be an
                 Jeanette said: “My voice becomes         less common, but yet more troubling,       echo of the triggering infection, or
              very weak and faint, and my voice           symptoms of CFS/M.E. The additional        could be a bad dose of whatever is
              breaks up, so I have to stop talking.       impact of speech difficulty to the          going around. I have seen a few
              The only thing that helps is to rest        isolation of CFS/M.E itself can be         people whose illness has been
              more, and gradually my voice will           understood. While word-finding              triggered by viral laryngitis, with loss of
              return to a more normal level. It usually   problems are common, serious               voice as an early feature; for them,
              occurs during a relapse or when I am        difficulty with actual speech production    relapses may show up with voice
              very tired, or when I try to talk for       is surprisingly uncommon; it is most       problems.
              longer than usual. I also have trouble      likely to occur in those who are more         Each person with CFS/M.E. will have
              with swallowing and chewing.                severely affected.                         their own version of the illness. If
                 Sarah added: “I tend to experience          Speech represents one of the most       speech problems are a feature for you,
              speech loss when my muscles are             complex functions of brain and body        they should determine how you plan
              having ‘muscle fatigue phase’ – the         and this illness can impact at different   that activity, just like any other energy
              sensation is that my tongue seems to        levels. At the ‘voice-box’ end, the very   resource. Apply the principles of
              become too large for my mouth, and          fine muscle control and coordination        pacing, including true rest and
              my jaw muscles become sluggish. I           on which we rely for fluent speech can      relaxation breaks, to speech just as you
              have to get the words out quickly           be affected, much like muscles in the      would to anything else. If function is
              before my jaw gradually becomes             arms and legs. Even quite subtle           limited, make sure that you use it to
              slower and slower and then stops            changes in function can affect the         best effect. Save your voice for saying
              working. The other type of speech           volume, tone and accuracy of speech        things that make a difference for you
              problem I get is part of a migraine         production. Swallowing is sometimes        as a person (maybe recite a haiku that
              ‘aura’, usually when I have had to          affected as related muscle and nerve       you have been composing for
              overdo things. I tend to feel as though     groups are involved.                       weeks?!). Asking for a cup of water, or
              words get stuck behind my teeth – I            If sensations in and around the         for someone to turn the TV down,
              begin stuttering and stammering, and        mouth and throat are affected (again,      could be done by pointing at a pre-
              it becomes increasingly difficult to         as sensations often are elsewhere),        written request list, for example. Find a
              talk.”                                      then speech can be harder. This is         signal system that suits your situation.
                                                          because the brain gets confused about



              40 InterAction 59 March 2007
                                                                                                                                     Dear Doctor
   Various patients have found that            Speech disorders can either be                               Dr Sarah
particular solutions or therapies can       present at birth or acquired as a result
help them, through trial and error. As      of stroke, head injury, or illness. Many
                                                                                                            Myhill,
is often the case with other difficulties,   are temporary, some transient because                           M.E./CFS
these may be particular to them and         of the nature of the condition. The                             specialist,
may not work for the next person. If        production of intelligible speech is the                        responded to
speech problems are major, it would be      result of very complex interactions
wise to seek help, if necessary a           originating in the brain.                                       Sharon’s letter
referral to a speech therapist. Whilst         In trying to provide a form of                               as follows:
they may not have seen many people          management for this symptom there
                                                                                         Speech is a complicated process
with CFS/M.E., they are expert in the       have been a few suggestions in
                                                                                         requiring intense neuro-muscular
ways in which illness can affect speech     literature and from anecdotal sources
                                                                                         co-ordination. Speech, together with
production, and will have valuable skills   in my patient cases. One suggestion is
                                                                                         balance and short term memory are
that can assist adjustment and              based on an ENT (Ear, Nose, Throat)
                                                                                         highly energy-dependant processes
recovery, regardless of the cause.          surgeon’s approach that when speech
                                                                                         going on in the brain. Let us face it,
                                            becomes sore the tendency is to rest it.
                                                                                         when somebody partly switches off
                                            However this often prolongs the
              Keith Anderson,               speech loss and it is then better to ‘use
                                                                                         their brain with alcohol, the first things
                                                                                         to go are speech, balance and short-
              M.E./CFS Clinical             it or lose it’ and continue trying to
                                                                                         term memory! This is because they are
              Nurse Specialist,             speak. This would be inclusive of
                                                                                         highly energy-dependant processes. In
                                            increased fluid intake, gargles with
              Fife, says:                   soluble asprin (where appropriate),
                                                                                         order to speak there are several
                                                                                         mechanisms that have to go in place –
                As if M.E./CFS was not      reducing or stopping smoking and
                                                                                         first of all the brain has to formulate
                the cause of enough         breathing and speech therapy exercise.
                                                                                         the thought to create speech, this
                disabilities, imagine not      Other methods used by some include
                                                                                         thought then moves to the speech
being able to tell a doctor how you         a pro-active rest approach that includes
                                                                                         centre where the necessary messages
feel because you have lost the power        speech, as an activity that is paced in
                                                                                         are created, which pass down the
to speak. Speech loss is one of the         the same way as any physical activity,
                                                                                         spinal cord to the mouth and throat.
more rare of M.E./CFS symptoms but it       such as walking, would be. Important
                                                                                         Just think of all the muscular activity
is frightening for those who experience     discussions or communications with
                                                                                         with respect to ones lips, tongue, jaw,
it as it robs them of another potential     people like bank staff or DLA
                                                                                         which are necessary to shape the air
coping resource.                            administration are planned into the day
                                                                                         flow that is created by the vocal cords.
   More common are communication            as a single tiring activity with little or
                                                                                         All these movements require very fine
difficulties such as losing the thread of    nothing planned around the rest of the
                                                                                         control of the muscles.
conversations, being unable to recall a     day. Regularly review any approach you
word or tiredness at the point of an        choose as your condition changes
important discussion – ‘brain fog’ if       often enough to render certain
you like that term. Very often these        methods obsolete.
events are strongly associated with the        Even the 2002 Chief Medical
onset of increasing fatigue and as          Officer’s Report into M.E./CFS officially
better spells come these symptoms are       recognised that a number of serious
less common. However other forms of         and unusual neurological symptoms
speech disorder are more prolonged.         and signs do sometimes occur in more
   Speech disorders belong to a broad       severely affected people with M.E./CFS.
category of disorders called                These can include double vision,
communication disorders that also           blackouts, atypical convulsions/fits, loss
include language and hearing                of speech, and loss of swallowing.
disorders. Communication disorders             When these neurological symptoms
affect about one person out of every        and/or signs occur, it is always
ten. Speech disorders refer to              important to exclude the possibility of
difficulties producing speech sounds or      the cause being another neurological
problems with voice quality. They may       disorder. In these cases consult your
be characterised by an interruption in      doctor or GP for further guidance.
the flow or rhythm of speech such as
stuttering, or by problems with the
way sounds are formed, also called
articulation or phonological disorders,
or they may involve voice problems
such as pitch, intensity or quality.
Often, there is a combination of several
different problems.

				
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