ME don't ask a psychiatrist for their views
I was speaking to Giovania Rowley a sufferer who was inquiring
about our group. In conversation she mentioned how her health had
improved after spending some time abroad in very nice
surroundings, with little or no cares. I told her of my similar
experiences. She asked me what I thought about the psychological
effects and M.E!
Well this is a pretty political hot potato, most of us have a daily struggle to convey the physical effects of the disease, and the fact that we are not suffering from Depression, although we might sometimes get depressed, thats not the cause of our illness (I believe we have all been infected and affected by the same pathogen).
To then say that there are psychological effects would seem to open a can of worms. Obviously most people feel better when the sunshines or when they are happy, and if they were ill, then their illnesses would respond likewise.
Dr Betty Dowsett, a specialist who has a wealth of experience
with M.E. says that relapses can be brought on by
mental as well as physical stress. Could not the reverse be true? i.e. for a sufferer with a history of cyclic remissions/ relapses, an overwhelmingly good experience could perhaps precipitate a remission? in my experience I believe this to be possible. More complicated is my experience of when in the midst of being very poorly that Ive had to perform some task and in carrying it out Ive actually moved on and am no worse for doing it! Although I dont recommend this form of suicidal therapy. To exert oneself in this state can, as many of you would testify, throw you headlong into a long and protracted relapse disproportionate to the initial cause. Although often for me its as if my Brain gets stuck in a groove. Sometimes the heavy legs/all over stiffness/no energy/brain fag symptoms which I cant move on from and I need something to shift me on, be it a few cold baths, a holiday etc. But do these actually make a lasting difference to our health, do the relapses last any longer?
Perhaps we are just following the course of the illness, of which we have little or no control over?
This is all little comfort for those who are severely affected and dont seem to have remissions to speak of. We can only hope that their health will improve.
The other subject we discussed was how are the High Profile M.E sufferers doing ? Claire Francis, Barry Sheen etc. They dont mention the illness much if at all. Are they cured? I wouldnt have thought so, although they look good (but one can often look all right with M.E) if they are better are they 100% well (could Ms Francis sail a yacht or Mr Sheen ride a powerful Motorbike?). Rod Stewart Im told also has suffered from M.E.!(Rock Stars with ME dont think it fits with lifestyle)
It would be nice to know how these people are, its understandable they would want to discuss the positive aspects of their lives, careers, etc. when in conversation, but surely they have a duty to publicise and legitimise their experiences with M.E. If they have suffered or are suffering from something so overwhelming and disrupting as M.E. how could they deny it.
This issue Ive volunteered my profile as Im still awaiting other members details. Just send in a photo and a few details of how you became a sufferer, It could be anything from a few lines to a whole or half page, it would be nice just to put a face to the name. I inherited the editorship of Kickback in 1995, from the then editor Richard Lamb. At the time I was doing the .printing and Josephine (my girlfriend) was typing the articles and labels, and helping fill the .envelopes. Richard was taking an extended vacation and so passed the reins to me. Prior to .1988 I had had the usual illnesses one gets apart from suffering from Polio in 1956 and a lot of .throat infections throughout the Seventies. In 1988 I after some years of good health and .feeling extremely fit I caught a rather bad flue, and after it subsided I was left with 3 months of .M.E symptoms, although I didnt know it at the time. After a year of feeling 100% normal, the .same thing happened again. In 1990 I got the symptoms back and after a couple of years of .remitting/relapsing symptoms Ive now been consistently unwell to date. Thankfully the days of being almost totally bedbound with zero mobility are few and far between, and I now have good/bad days or weeks, although never able to escape the clutches of this wretched illness.
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