KICKBACK 39 1/12/01

PART OF MEWL Newsletter Autumn 2001

CONTENTS

1) A letter from Kim Snyder.Re: Sept 11th. 2) Emily Wilcox Update. 3) Puzzling Malaise: American Med News
4) Report on the Scottish Parliament's Public Petitions. view 5) Author Laura Hillenbrand. 6) ME/CFS Web Sites.
7) Phil Murray Update. 8) Monica's experience with GET. 9) Athletes with CFS?/ Oprah Winfrey petition
10)Ignorant Doctors by Mahboob. view 11). Hyperbaric Oxygen Therapy. 12) ME (CFIDS) misdiagnosed as MS?

Greetings,

After turning full circle again and again, are we where we started, or have we moved on? (symptoms and status)

The last few months have seen much 'in fighting' within the ME community. The CMO's report is about to come out and Dr Charles Shepheard and Anthony Pinching (both committee members) have been accused of not fully supporting our cause. Then the World Health Organisation's classification of ME and Chronic Fatigue Syndrome was tampered with by the London collaborating part of the WHO (the London part unbelievably being connected with Kings College Hospital and Simon Wessley!). The main charities (ME Association and Action for ME) were criticised for their slowness in condemning these changes and in asking for them to be reversed and apologies to be given. And more and more articles about ME refer to graded exercise therapy (GET) as being the treatment of choice. When will the penny drop? Those who respond to GET either don't have ME, or are in remission. Any ME sufferer who tries to exercise back into health will fail, full stop. Ask any sufferer living with the disease, we get enough GET from daily life events. For those who are bed bound going to the bathroom is exercise, for those who are house bound the stairs are a daily challenge. For those who can walk a short distance, posting a letter is a task. These people are always wanting, and challenging their capacity. They don't have the luxury of having spare energy. Life for us is a continual battle of robbing Peter to pay Paul. A stark choice, and often there's no choice.

I have come to the conclusion that it takes a certain type of person to be an ME sufferer. You need the resilience of an ox. It takes years of suffering to accept it. Without this grounding one couldn't survive. It's ironic, you need to be fit enough! Those who've never had a long-term illness could not contemplate being ill for more than four weeks. Or having a condition that keeps relapsing. I'm humbled by the shear-dogged tenacity of those, bed or house bound sufferers, who soldier on, often with minimal help or social contact.

Ellen Goudsmit received criticisms for amongst other things her 'switching therapy' (doing various tasks then switching to others before certain parts of the body get exhausted) ie knitting then reading. Must admit it does sound a bit condescending. Westcare also comes in for some stick after advising sufferers to seek graded exercise therapy, what next. My own theories about the illness haven't changed. Unless you suffer from it, you can't be expected to understand it. And even if you have it, its often still difficult to understand those more or less severely affected than oneself. i.e on another plain. Although many of us experience extremes in severity at different times.

Sadly The ME BBS Information Mailing service is no more. We used to get a lot of our articles from them, but now Deborah Shearer , who ran it has packed her bags. She is not giving up on ME (a sufferer herself) but is becoming more actively involved in the new campaign for ME in Scotland. It seems, as in health care for the elderly, the Scottish might champion our cause (see article on Scottish Parliament).

Those who've seemingly made a 'full' recovery would say "it's easy", just do this or that and it will go. Or that ME runs a course and is self-correcting. Try telling that to a house bound sufferer of many years. I would stand well back as they might use their last bit of energy to lash out. Many of the so-called 'experts' say it is curable, or it lasts X number of months or years. Let's be truthful, do you know anyone who actually got completely better? Yes, some make progress to a less severe state. Many sufferers feel those who made a complete recovery probably never had it in the first place. I think Dr Ramsey had it right. He said that some sufferers can have spontaneous remissions that have been known to last as long as 7 years!

My views: I feel it runs a course irrespective of any treatment, and is all we can do (at this stage) is to follow. Help the body, healthy diet, low stress etc. And on better days do more, trying to do more when you feel rough is definitely not advised, again ask a sufferer! In the news is Emily Wilcox . She has had a great improvement (she says recovery) from ME, and Phil Murray who was featured in kickback 37 also is well enough to return to work. He says his improvement is due to taking Lustral an anti-depressant (see latest article). I think his body must have been overcoming the illness at this time, and he would have improved anyway. Emily Wilcox actually believes she got better in spite of any treatment she had or medication given (again see article). It is great that she has made such a recovery after being wheelchair bound only a couple of year's back, and gives some hope to the rest of us. At least some are improving

Kevin.

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