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A Curious Thought - ME

by Nancy Blake(more info)

listed in cfs me, originally published in issue 164 - November 2009

The Psychiatrist has decided that, along with ME, and the widely expanded category, CFS (into which people with ME can be conveniently statistically hidden), Lyme's Disease and Gulf War Syndrome are among the illnesses for which any physical treatment can be dismissed, because they are caused by faulty thinking patterns.

They really didn't want to tell me what forms of treatment they used, the Lyme's Disease specialist at the hospital. My friend, bright, bubbly, energetic, over the years more and more ill: rashes, swollen glands in her neck, weakness, pains all over, memory problems – but fighting it every step of the way, going on working as long as she could and long after she should have – trying everything, going on the internet, blood tests negative, doctors telling her 'just lose some weight and get exercise' well what else do they ever tell us to do – ' lose weight and exercise' is the answer to everything presented to a doctor (by a woman) childbirth, warts, cancer...

Now bedridden and in constant pain, beginning to experience the neurological symptoms characteristic of the latest stages of Lymes, she was trying an antibiotic treatment, and became so sick that she had to be admitted to hospital. When I rang to inquire how she was, and ask about the Lymes, the doctor indignantly assured me that of course they couldn't make any diagnosis without tests. After she had discharged herself, she told me that as soon as he arrived at her bedside, he had said immediately that she had ME, and was getting the nurses to force her to walk up and down the corridor, shouting at her....

You know, if they amputate your foot to save your life, if they give you a long and painful treatment, which makes you better – or you know the reasons why it hasn't made you better – you are grateful, aren't you? You thank them. It isn't that we mind unpleasant or painful treatments. We are glad they are trying to help.

When I first got sick, and walking across the room meant I had to rest for an hour, when I had to ration walks to the loo, when the exhaustion was ...surreal, incomprehensible, why can't I just..... A friend brought me an article about ME. After I read it, I thought, thank God, there is an explanation, I'm not going to get worse until I die. All I have to do is rest. Half of the people who have had the illness for two years will be recovered in six, it said in the ME Association leaflet – as long as they are careful to rest, especially in the first six months. (An article in Elle magazine told about a girl who, when nearly recovered, joined a hockey game one afternoon. She was still in a wheelchair two years later.) Exercise intolerance is the defining feature of ME, according to Douglas Hooper. It makes you worse, it risks severe, long-term disability.

But hey, the insurance claims, especially after the Lake Tahoe epidemic, were astronomical! A valuable asset, worth lots of money, is The Psychiatrist, who will testify that ME is just wrong thinking, psychological, got to tell the silly sods that it's in their head (this is called Cognitive Behaviour Therapy) and make them EXERCISE, this is called Graded Exercise Therapy (GET). If on the off-chance that you are still able to drive, this involves walking to your car, driving a few miles – hope you have an automatic, and power steering, but probably not – finding a parking place near the hospital, parking the car, walking to the department, maybe going up some stairs, lying down on a table and lifting your legs a few times. My other sick friend, who was able to do that, she really did cooperate, is now completely bedridden and in constant pain, years later.

I remember being terrified that some psychiatrist would say I was depressed and they would make me walk, up and down....but I was lucky. My doctor believed me. I got a great job, used a wheel chair, helpers, rested my head against the wall at meetings (our heads are so heavy, anyone with ME needs to keep their head supported, it makes an enormous difference) went home and went to bed, wrote my reports with a keyboard on my stomach and the screen beside me – couldn't sit up long enough to type.

Everyone helped, everyone believed me, and fifteen years later, I'm virtually back to normal. Though I was told that using a wheelchair was career suicide – at least in the Social Services Department!

In the meantime, The Psychiatrist has provided his money-saving services not only to US health insurers but also, kindly, to the Department of Health, and the MOD, and now Gulf War Syndrome and Lyme's Disease have been included in the swelling numbers of illnesses which are the result of wrong thinking! And vast sums of research money, intended for research into the causes of ME, are being spent to demonstrate that 'rehabilitation programs' based on CBT and GET are effective. Oh, and the label has changed to CFS, to include everyone who has fatigue......so when some are helped, the ones who have ME and are made worse can be labelled as simply uncooperative. In an interview The Psychiatrist gave to the New Scientist he seemed almost proud of his ability to ignore the desperate protests ('hate mail') he receives from victims of his recommendations.

But if these people were previously energetic, workaholics, never gave in to being ill......what caused the dramatic personality change??? And if exercise was making them better, ....well, doctor, you're being very secretive about what you do.....is that by any chance because what you do is not just making people unhappy, it is doing them harm? And regardless of the NICE guidelines (helpfully provided by The Psychiatrist, backed by statistics....I think CBT has been proven effective in up to 5% of cases of ME....) perhaps you have noticed that what you are doing is harming them? Or perhaps that the license you have to be cruel is having an effect on you.... we medical people do get cross when what we're doing isn't working, and, doctor, how many thank you cards do you have on your wall from grateful patients?

References:

Bassett J. Smoke and Mirrors. An analysis of the scientific legitimacy of the claims that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are appropriate, safe and effective treatments for people with ME. The Hummingbird's Foundation for ME (HFME).  www.hfme.org   www.hfme.org/cbtandget.htm#92151527   www.ahummingbirdsguide.com 2006, updated 2009.
Interview with Professor Simon Wesseley. New Scientist 201 (2699): 26-7. 14 March 2009.

Addendum

In Professor Wesseley's interview, he told the interviewer that his methods helped about 30% of his patients. This is the success rate that would be expected from administration of an inert placebo. The advantage of an inert placebo is that it wouldn't make the other 70% worse.

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About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

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