• KICKBACK46 10/5/04
  • MEWL Newsletter Spring 2004
  • I must apologise for the year gap since our last newsletter. I had intended to get one out last summer then the autumn then winter and here we are exactly a year on. Sadly, member participation in this time has been almost non existent! Perhaps at our meeting on 19th May (see below) we can discuss how we want MEWL to proceed.

    *This year's ME Awareness day is on Wednesday May 12th. Once again there is a demonstration at 79 Whitehall (Richmond House) at 10.30am. With the presentation of a petition to Number 10 and certain people then lobbying their MPs at parliament It promises to be a bigger affair than last years, the organisers are hoping for 250 participants as opposed to 50 last year. Unfortunately the lateness of this newsletter doesn't give much notice, but if you can make it, it would be great. If you can't, how about sending someone along to represent you! If you can't make it remember that others are fighting on theirs and our behalf. Due to commitments and condition I'm unlikely to be able to make it, but I will try.

    It seems like ages since Monday May the 12th 2003 (a year in fact) when a band of dedicated demonstrators met in Whitehall for last years ME awareness day (see review on page 2). It was heart-warming to see those who managed to make it in the rain, travelling, in some cases the length of the country, but somewhat sad that more weren't able to make it. Many sufferers obviously not well enough to even consider going, but many, many more not even aware the event was taking place. It seems, as with the RiME petition that many ME groups and organisations did little to publicise it. Some things have got better for us over the years, but in all cases this has happened because people have fought the prejudice and miss-information regarding ME.

    Yes I was told (1988) by my then GP: "you are young, you want to get out and enjoy yourself" and by his replacement "I don't believe in ME, have you ever seen a psychiatrist". Even though when I became ill I had a good job and social life, and enjoyed swimming 3 times a week. Thankfully these responses that were typical are now in the minority, but still ignorant doctors are to be found, who fly in the face of the hard facts that ME ICD 10 is a serious neurological disorder accepted by the Government and The World Health Organisation as such. Mind you, although in this country we are not allowed to give blood to avoid infecting others (see item on page 5). It appears that certain parts of the Department of Health are confused, believing that the way we think about our disorder or by regular exercising this infection will mystically disappear? ie Cognitive Behavioural Therapy and Graded Exercise is to be the treatment of choice which is being Government funded to 8.5 million, and the exclusion of research to find the true cause and treatment of ME.


    There's been so much information and many articles over the course of the year that I had saved for the intermediate kickbacks, that I was overwhelmed with what to and not to include. Some of this is now old news and so I didn't include any of it. Along with the limited time I had this has meant this issue is painfully thin! Not that unlike the editor! Actually, I've increased my weight from under 9st to 9.5st. so now I'm just thin.

    PS this newsletter has now unfortunately been even further reduced to two sides once again my apologies.


    MEWL Meeting Wednesday 19th May 2pm c/o Helen


    1) Last years May12th Demo. 2).Sheila Barry's register 3) Carli's Poem. ....Note: Items crossed out are held over.

    4) ME ActionUK Poll of sufferers. 5) David Puttman's article and the criticisms also no back pageL

    6) The click-on classroom. 7) National Blood Service- Donor Guidelines. Due to poor health and limited time.