KICKBACK 36 21/10/00 16/12/00

part of MEWL Newsletter AUTUMN 2000

Greetings, (My apologies for the lateness of this Newsletter, excuses on page 2)

NEWSLETTER CONTENTS

1) List of BBS Information Articles. 2) Emily Wilcox Interview. 3) Letter to CMO from Ann Crocker. view

4) Observations on CMOs Working Group on CFS/ME. view5) List of information sent in by Chris Gorner

6) hypercoagulable state by Dr. David Berg. 7) Quotes by Dr Bell. 8) part of article by Gail Kansky

On the last front page I'd thought I lost the plot, but several members agreed with my feelings. This time I really think I have. I like many others have been having a hard time with this curse of this illness. How does one cope? Well one has no alternative. Short of ending it all, what are the alternatives, but to carry on. A few weeks back after an enquiry about the cold baths, I thought I ought to start doing them again, practice what I preach, and I am still positive about their effect on my symptoms. Well blow me once again I felt reborn. Instantly my muscles changed and felt part of my body, after a week feeling so much better (human) although I had been achy, but a nice achy, the I've just played squash or laid a laid a patio achy. The one we used to know, not the ache that says my whole body has been poisoned. And I did feel so good, fantastic but then rather quickly relapsed! Perhaps I overdid it, when you feel improved you want to do more. But most probably I was expecting too much. I feel the cold baths are a kick-start, and in my case can precipitate a remission. But if I'm not very well it can tend to squeeze out what little energy one has.

Anyway a few days into the baths, feeling so good, I started trawling the Internet trying to find links to cold bath therapy. I wasn't having much luck, then I tried searching Prof. Kakkar (he was in charge of the trials, in 1996). Well I got a link to the work of Dr David Berg. See article in this Kickback. Which seemed very interesting at the time, but now I'm not so sure (what do you think). Since then I've spent quite a bit of time looking for ME/CFS links on the Net. And I've been somewhat disappointed. So many of ME Web sites are about graded exercise with antidepressants as being a CURE for ME. And these are not psychiatrists but ME groups and include testimonials from sufferers, references to Dr. X s plan on how you can cure ME. I'm sorry but I disagree. If these people were suffering from ME, then they had or are in remission. Spontaneous remissions are a feature of the illness (in many cases). The exercise might have kick started a change in their situation. But it cannot be a cure. Perhaps these individuals were not actually suffering from ME!, or are those who are not so badly affected. We are not STUPID, any chance of a cure or treatment to improve our situation, we would be grasp with both hands.

After reading a very comprehensive and damming BBS article by Margaret Williams about Simon Wessely and his associates, how he's trying to convince the NHS that CBT could be a cheap solution for the treatment of PwME, ignoring all the research that has been carried out on ME/CFS. The Article makes compelling reading, although frustrating and left me quite wound up. It includes this quote by James McSherry MB.CHB: who says"I've never been able to determine how secondary gains that include financial hardship, social isolation and reduced quality of life can perpetuate illness behaviour", and also part of a passionate speech by Simon Molesworth AM QC who makes the point - forcefully - that the generally inadequate response by the medical profession when dealing with patients with ME/CFS leaves physicians seriously vulnerable to lawsuits when it is established that those physicians were all to ready to dismiss ME/CFS as a somatisation disorder or as other psychopathology

To my horror I then started to read a neighbouring local ME group's newsletter and couldn’t believe my eyes. It contained an article on Fatigue by Trudie Chaider! the name sounded familiar, she was saying you should do the same amount of exercise each day irrespective of how you are feeling! And I thought that doesn’t seem good advice for someone with ME. Listening to ones body would appear more appropriate. She also condescendingly recommends taking up a hobby if you feel bored! We'll on looking back at the piece (mentioned earlier) by Ms Williams, I saw, blow me, she's one of Wessely's colleagues! And works as a behavioural therapist on a CBT unit at Kings College Hospital. On speaking to the ME group who produced the newsletter. I was told, yes, they new about Ms Chaider's credentials, and yes it was controversial within their group but several of their members had been to Kings with seemingly good results and they asked her to write an article for their newsletter. I said I thought the piece should have carried a reference that it was a minority view, one not held by the mainstream of research or sufferers.

Early December:

The above was written in early October, alas I was not well enough to read or type up the newsletter, and I was also waiting for promised articles from various members, (still not arrived) but given their situations, that’s understandable. So for once the newsletter is almost 2 months overdue! Well, after my most awful year with no remissions, out of the blue, mysteriously my symptoms went, almost completely just for two and a half weeks mind you. I didn’t do anything to bring about this, which is all so confusing. How in this time my muscles or what's left of them could work so well, I could walk with a spring in my step! No aches, no fatigue. I must admit I overdid things. After this remission I started to feel "heavy," my brain started to go slow, I started to feel fatigued. Then came the aches, the stiffness, and the "wretched fatigue". I know many would say it was my fault, I should have taken it easy but in the past I've had remissions took it easy and still relapsed! My sympathy goes out to those who don’t (seemingly) ever have remissions, but at least one can take hope from those who do, that the illness (providing we are all suffering from the same one) might one day be cured and the damage may not be permanent.

Finally, I still haven't received the "member's articles", and members profile has dried up. I don't mind, but with such little participation am concerned that the newsletter might not be representative of the whole of our membership. Please send any items for inclusion, or criticisms of the newsletter. Did you find 'members profile' interesting? I did. If so, send a snap, and a brief, or longer piece about yourself (photos returned)

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BBS INFORMATION SERVICE ARTICLES numbers in brackets are numbers of A4 sheets for per article.

Dated 7th August 2000 (for full copies of articles send 5p/ sheet plus postage, or can borrow original copy)

  1. Article by Margaret Williams Re: "The Wessely School" see Ed. References to this amazing article (27).
  2. CFS News 30/6/00: a) Ketamine reduces pain in FMS (2). b) Gulf War Vets show brain cell decline (2). c) Belgum thesis: endocrine and metabolic aspects of CFS (2). d) Ampligen vs Asensio, legal attack (2). e) GAO report on CDC and NIH (3). f) USA name change group (1).
  3. M.E. What do we know? by Michael Sharpe: another wind up by a psychiatrist (he believes CBT is the cure) (12).
  4. NCF Member unearths new truths about ME/CFS by Gail Kansky : about HHV-6A its links with MS and AIDS (3).*
  5. ME/CFS info from UPSCUM, talk by Dr Macintyre, and leaflet by Leeds Council re: support assessment (11).

 

Dated 16th October 2000 *Included in this Kickback

  1. Open letter to CMO from Ann Crocker.(Re:papers by Dowsett,Richardson and Pheby- her daughter has M.E) (2). *
  1. Newsletter 6 from CFS Research Foundation: details of their research projects and fund-raising (6).
  2. CFS News 31/7/00: a) Orthostatic abnormalities in CFS (1). b) NIH study sees endocrine abnormalities in FMS (1). c) Endocrine abnormalities not found in women with CFS or FMS (1). d) Israeli review paper on FMS, CFS and myofascial pain syndrome (1). e) German review paper on psychosomatics and pain in disability cases (1). f) News updates on conferences (1). g) Medical publications citations (3). h) U.S. Co-ordinating committee addresses GAO criticisms (6).
  3. CFS News 31/8/00: a) Fibromyalgia in men more severe, but less frequent (1). b) " No other illness like this one " Dr. Bell finds dramatic abnormalities in CFIDS (2). c) Medical literature citations (2). d) Olympic soccer champion Michelle Akers ends career due to injury and CFS (5).
  4. The Environmental Medicine Foundation (flyer for charity concerned about the effect of environment on health) (1).
  5. Observations on the Chief Medical Officer's Working Group on CFS/ME. from ForT author unknown (6). *
  6. Notes on Medical Reference Papers (discriptions of ME/CFS symptoms/dysfunctions) from ForT author unknown(7)

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