• KICKBACK 40 ...28/2/02
  • PART OF ...MEWL Newsletter Winter 2001/2002
  • CONTENTS

    1) Independent working group's report into CFS/ME published. 2) Letter to the 'Lancet' by Simon Lawrence.
    3) CNN Article Chronic Fatigue Syndrome more than being tired. 4) ME in Parliament 6th Feb 20002.
    5) Immune System Dysfunction May Play a Key Role in CFS. 6) Second part of Report on the Scottish Parliament's Public Petitions. 7) Dr Paul Cheney on Growth Hormones. 8) SomatoMed. 9) To exercise or rest?
    10) ME/CFS sufferers to link up.view 11) 'Yuppie Flue is recognised' The Times article. 12) Psychiatrists walk out.

    Seasonal Greetings,

    The CMO Report finally appeared. On Friday 11th January 2002 it made headlines, although the BBC midday News and Ceefax carried the story 'Yes, the Government said ME does exist' they weren't shown later in the day. ITV had the story on its bulletins, its detailed 'in focus' on Teletext also had four pages about ME, but again only showed it till late afternoon. The Daily Mail had an Ester Rantzen ME article, the other main papers all had articles the following day. The bottom line is that although any news is good news, it seems the only strategy for treatment still seems to revolve around graded exercise and cognitive therapy! I'm waiting to see future headlines of 'Government experts admit exercise therapy doesn't help ME' and 'ME isn't in the mind'. The trouble is that ministers are lay persons who rely on 'experts' for advice. 'Experts' in this case means psychiatrists! Doctors like to solve problems in their own chosen field. Ask a surgeon, he'll suggest surgery, and so on.

    We the patients are the real experts. We have, in many cases, years of experience of suffering with it. Not just a statistic or definition on a sheet of paper. We live with it 24/7, we know its every trait. When new people ask me which doctor to seek for advice, I recommend they see other sufferers. GPs can be sympathetic but impotent, generally ignorant and often very insulting. Specialists (except for a few) really don't know what they are talking about. They again have no 'treatments', many of them believe that you can pace yourself back into health. And if you need to see a psychiatrist for this known neurological disorder, its catch 22, you probably do need one!

    One main difference since publication of this report, it seems your doctor cannot now say there's no such thing as ME! Which has to be good. And the Government admits that ME sufferers have missed out on treatment and research. Who knows, if the wheels start rolling perhaps one day we will get both. 'Wake up son, its only a dream'..

    My Christmas came and went. For the first time I had a relapse on the day itself. I found I had to retire to bed throughout the day. Boxing Day I was up, only just and not able to make the stairs without considerable trouble. I in fact didn't see anyone for four days. Sounds 'sad', but actually it wasn't. For once I didn't have to pretend to anyone that I was unwell (look OK, feel like crap). These seasonal occasions can be demanding for 'normals' but for people with ME they have added pressures. By New Year's eve I was better, but have since been on the 'roller coaster' with extremes of symptoms. At best able to get out and feel human, at worst feeling wretched, like death warmed up and a complete zombie. Hard as I find it is to live with my symptoms, I am reminded of the hell it must be for those who don't have remissions.

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    Request for member input For the first time we have a newsletter with no member input other than my own. I don’t mind, and I understand. Many of our members are not well enough to consider sending items in. Even those who are able are busy enough just doing what they do, but just think how excited I get when I receive something J

    Go on, do it, sure you will, go on, go on, go on, go on, go on, go on, etc,etc (Did you hear those recent IR adverts?)

    Post any items for KICKBACK 41 (out in April) to the Editor or you can even email it to: kickback@onetel.net.uk

    Your profile, what you'd recommend trying, what you wouldn't, good/bad doctors, your problems, in fact anything relating to our predicament. It might help others, and as non-sufferers also peruse our pages, it might spread more understanding.

    GROUP MEETING .....Wednesday 10th April 2pm c/o Helen Lyons.