All about M.E

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					All about M.E.

                 All about M.E.
                 Charlotte Eagar, former war correspondent
                 Even though she had a new boyfriend, a job she loved and a book about to be published,
                 Charlotte Eagar (pictured) found herself crippled by M.E. Here the former war correspondent
                 tells of her battle with the disease that attacked every part of her life. (Reprinted with thanks
                 to the Evening Standard’s ES Magazine, 19 September 2008).

                 It’s now time for my second nap of the       often terribly cold, and spent a lot of        It’s interesting that M.E. became
                 day. I’m used to saying I have M.E. but      this summer lolling in a fur coat. When      prevalent in the 80s, when quick-trip
                 when it was first diagnosed in March, I       I was worse back in January, I used to       foreign travel really took off along with
                 was embarrassed by thoughts of               alternate between violent flash sweats        the American working culture – lunch is
                 ‘malingerers’ with ‘yuppie flu.’ I wasn’t     and shivering fits.                           for wimps and the 12-hour working
                 sure I believed in an illness that allowed      An inability to concentrate is another    day. There was no room to convalesce.
                 you to sunbathe but not work. But it’s       problem. Six months ago I could hardly
                 a bit like seeing a ghost or true love; if   read a paragraph of an Agatha Christie       Afghan virus
                 you didn’t believe before, once M.E.’s       without feeling sick. Luckily my poor
                 hit, you know there’s something funny        doctor, William Weir, one of Harley          My doctor thinks I picked up the
                 going on.                                    Street’s top M.E. specialists, has           original virus in Afghanistan two years
                    M.E. stands for myalgic                   become quite used to his muddle-             ago and it’s stuck in my system. I had a
                 encephalopathy but its other name is         headed patients missing appointments.        horrible stomach bug and couldn’t
                 post viral fatigue syndrome. No                 My liver function has slowed              keep anything down for a week. But I
                 surprises – its main symptoms are            dramatically, and that was what finally       was doing a story on opium farmers
                 exhaustion and sleep. No, I’m not just       led to the diagnosis. My body could not      and couldn’t just stop, and anyway
                 being lazy. I have, or used to have, a       metabolise the anaesthetic during a          Afghanistan is not a comfortable place
                 life well worth staying awake for. I was     routine operation last February; it was      in which to be ill.
                 contributing editor on (ES Magazine); I      having enormous trouble getting rid of          I came back to London, had a couple
                 was also a foreign correspondent, sent       any kind of toxin and my body was            of relapses and felt increasingly weird. I
                 to places like Afghanistan and Iraq. I       slowly poisoning itself. The general         began to work from bed in the
                 had my novel about Sarajevo coming           anaesthetic was the final straw.              mornings. I stopped going out much,
                 out, The girl in the film, and was               I was in the Lister for day surgery but   didn’t have the energy to do my Pilates
                 halfway through another, Clementina’s        had to stay for three days; every time       class. I started having to turn down
                 ghost, set in Rome; my small publishing      they tried to boot me out, I collapsed at    work (the freelancer’s nightmare)
                 business was going well.                     reception.                                   because I felt so tired.
                                                                 A month later I crawled up my                Six months later, I was sent to Korea,
                 Stopped functioning                          gynaecologist’s stairs for the post-op       where I had another bout of a sick bug,
                                                              check-up. She took one look and said,        but I’d spent three weeks tracking
                 I had a flat in Bayswater, an interesting     “Do you think you could have M.E.?           down a man who was hiding from the
                 social life and a new boyfriend. But it      Your energy levels are shocking for a        North Korean secret service, because he
                 all bled away as slowly my brain and         woman your age.”                             smuggled refugees from North Korea,
                 my body stopped functioning.                    It was such a relief to have a label      so I couldn’t call the interview off. I had
                    I would be at lunch, or in a medical      after feeling ghastly for so long. M.E.      to borrow the bed in his safe house to
                 appointment and suddenly I would             hits across the board but it is a classic    sleep half way through the interview.
                 have to go to sleep. Sometimes I’d           illness for women in their 30s and 40s.         I immediately went down with a
                 recharge after only 10 minutes;              Possibly because women tend to be            respiratory infection that turned into
                 sometimes I wouldn’t wake for three          more conscientious than men and the          pneumonia. After that, I was in bed for
                 hours. And after my sleep I never felt       typical profile of an M.E. sufferer is        months.
                 refreshed. Yet before, I’d been one of       someone who is very hard working.               But I needed to earn my living, and
                 those energetic people who make                 Doctors believe that the sufferer picks   so as soon as I could speak on the
                 others feel rather tired, rather like a      up a virus, often a very alien one that      phone, I started working again, from
                 huge dog.                                    the body has trouble fighting off. You        my bed. For a year, I would do a couple
                    Other symptoms include muscle             get ill, but go back to work too quickly;    of stories, start feeling ghastly, and
                 weakness – sometimes it’s as if I am         the classic pattern alternates relapse       have to take ten days off again. I
                 walking underwater, and a tin of             and work, until finally your body shouts      started spending almost all day in bed –
                 sardines can be extraordinarily heavy;       STOP!                                        I just didn’t have the energy to get up
                 and there are headaches and nausea.             And it does this by making your legs      as well as work.
                 My temperature gauge is affected; I am       and your brain stop functioning.

                 26 InterAction 67 February 2009
                                                                                                                                     All about M.E.
                                                                                        with the changes in my life that the
                                                                                        illness was forcing me to make to my
                                                                                        work and my personal life.
                                                                                           I have regular lymphatic drainage
                                                                                        massages and I started seeing a
                                                                                        homeopath, who connected my
                                                                                        acupuncture points to a computer, told
                                                                                        me to eat protein and as much dark
                                                                                        chocolate as I could without getting
                                                                                        fat, and prescribed stuff for the
                                                                                        adrenals, for the lymph and hormones,
                                                                                        and a brilliant tincture called ego boost,
                                                                                        which I would take before seeing
                                                                                        aggressive relations.
                                                                                           Unfortunately many people would
                                                                                        say; “Oh my cousin had M.E. He’s fine
                                                                                        now. He’s living in the Outer Hebrides”
                                                                                        (or Northumberland). I don’t want to
                                                                                        live in the Outer Hebrides and I really
  I would have to sleep for an hour or       sufferer. Mayr doctors believe that
                                                                                        can’t afford to.
so in the middle of writing a story. I       many medical problems are
                                                                                           Finding a competent doctor was
found it much harder to marshal my           exacerbated by what we put in our
                                                                                        harder. I was finally recommended Dr
thoughts. Then the sweats started, and       digestive tracts. They detoxed me and
                                                                                        Weir by a colleague; now back at work
the headaches and the throwing up.           gave me zinc and magnesium pills; they
                                                                                        as deputy editor of The Independent on
Finally, after the operation, I could        said that with my liver in its current
                                                                                        Sunday. No Outer Hebrides for him, but
hardly walk, and my body swelled up.         condition, I should not have alcohol or
                                                                                        he did have seven months of absolute
                                             caffeine, or much fat, for months. They
Getting cured isn’t simple                   also noticed that my lymphatic system –
                                                                                           Dr Weir has put the fear of god into
                                             which is vitally important for
Although it is better understood                                                        me. He says I will get better but I have
                                             eliminating toxins – had stagnated from
nowadays, M.E. is still shrouded in                                                     to do no stressful work at all, until my
                                             spending so long in bed. That had
mystery. Diagnosed, I thought, I could                                                  body is strong enough to mend itself.
                                             made my legs and torso swell up.
find someone to make me better,                                                          Certainly the last two years of part-time
                                                Every day they mummified my legs in
except that getting cured of M.E. isn’t                                                 work, rest, work, rest just made me
                                             bandages to squeeze the lymph round
that simple. There is no pill that you                                                  iller. He also recommends
                                             my system again. They said I had to
can take and some doctors remain                                                        transcendental meditation, yoga and
                                             take mild exercise every day, building
sceptical. They diagnose you by ruling                                                  dark chocolate.
                                             up slowly, a week at a time. I was told
out what you definitely don’t have.           to keep off wheat and dairy; to eat
  My blood was tested for every kind         light food, but warm (rather than raw)     Learned to pace
of hormone deficiency or cancer that          since it would be easier to digest.        I have learned to pace myself. If I drink
could possibly produce the same                 I went to stay with an aunt in the      even half a glass of wine, my muscles
symptoms; all the tests came back            country, where I could sleep and not       are very weak the next day, so I don’t.
negative. One Harley Street hormone          worry about cooking or my career and       If I do no exercise, or too much
specialist told me I was suffering from      where I could walk the dog every day       exercise, everything starts slowing
depression; I pointed out that I was         by the sea. Slowly, my energy levels       down. If I concentrate for too long, I
perfectly happy, except my legs weren’t      started coming back but my GP still        can feel ill for days.
working and I felt knackered all the         hadn’t found a specialist; with the           Doing no work is horribly expensive
time and sick.                               limited amount of energy I had, I          and sometimes I panic as I see my
  It is easy to confuse M.E. with            started ringing up other people who        savings being whittled away and my
depression because some of the               had had M.E. for their                     investments vanishing in the credit
symptoms like lying in bed all day, are      recommendations.                           crunch. But I have realised the really
the same. And also, M.E. is very                Everyone agreed that the key things     expensive thing will be never being able
upsetting; it’s horrible to see everything   were rest, diet, graded exercise and       to work again. I am better off having a
you have worked for, your money, and         some form of psychotherapy, to help        year or so off work now, and then
your life, dwindling away. If you live on    deal with the problems thrown up by        going back to making money, than
your own, it’s also very isolating. But if   the illness. One Australian friend said;   ending up on benefits in the Outer
you go out, then you get exhausted           “Its simple; no booze, no caffeine, no     Hebrides.
and more ill.                                work, for a year.”                            I am still so much luckier than many
                                                A therapist taught me to take more      other people and, who knows, maybe
Austrian detox                               frequent naps whenever I felt the need,    my book will be a bestseller.
                                             and to say, “No I’m not going to do
I went to the Gesundheitzentrum Mayr         that,” when people ask me to do            The girl in the film is published by
and More clinic in Austria, on the           something that I felt was too much.        Reportage Press £11.99
recommendation of another M.E.               She also helped me to come to terms        (

                                                                                            InterAction 67 February 2009 27