• KICKBACK 41 ...24/4/02
  • PART OF ...MEWL Newsletter spring 2002
  • *please see RiME petition letter / signature sheet* if you agree print off and
    ..........................................................sendback to Paul Davis by the end of June. 'let sufferers speak their mind'

    Hi everyone,.........................(newsletter contents below)

    For once the newsletter is actually ahead of schedule. Mainly because of the RiME petition (enclosed) which needs to be sent back (note address) by end of April. This petition is calling for research into the physical causes of ME (excluding more psychological research) and has found its way up and down the country with good response. It seems everyone knows someone affected with ME and most agree with its aim. So please send it back with as many signatures as possible, but don't worry how many (if any) you can get, one will still be OK. The background to this petition is that certain doctors/patients groups believe we don't need research! And that we shouldn't exclude psychiatric research as this might stigmatise people with mental illness! Up till now that’s all we've had.

    ME awareness day is on May 12th. Awareness week runs from May 12th to 18th.

    Once again I'm afraid to say we have nothing officially planned. Ill health and making plans is not an easy mix. Anyone with any ideas of how we could be involved please let us know. Some groups organised events many months in advance. I, like many, of us live on a day by day basis. Well, keep a look out for items in the media, good and bad (cringe). The fact that the day falls on a Sunday means we might be overlooked L.

    This newsletter is taken up by the transcript of the ME debate in the House of Lords, three cheers for the Countess!

    I think you'll agree it’s a breath of fresh air. Perhaps there is a god after all.

    In the news

    There was an article in the London evening standard 9th April entitled 'why young mums' fear shingles will be the new ME'. The article was quite informative regarding shingles, but it didn't mention ME until the end when it eluded 'could shingles be the new ME'? And that thirtysomethings, particularly mothers of young children should slow down. Well, this seemed to me to be perpetuating the yuppie flue myth. And then blow me on the 16th April the same paper carried an article 'Do you suffer from the London Disease'? Talking about lifestyle illnesses and mentioning ME in its subtitle. With a picture of some office worker, lying on a park bench, completely exhausted. It seems we are the flavour of the month and they can't seem to separate us from any complaint with tiredness or exhaustion. If only… In my reply (see later) I emphasised the severity of ME and pointed out that it is not caused by overwork., and if that were the case half the population would be suffering from it.

    There was an article in the Guardian Saturday on March 30th by Jerome Burne. Entitled 'Battle Fatigue', about Hooper and Wessley (yawn- if I hear that name once more) both sides of the debate, where the psycho man tries to fudge his views, which although informative goes over well trodden ground, for us at least.

    The other main controversial item has been the BMJ article on 'non diseases' it appeared in the Guardian and other papers (see Tudy's report and the Countess of Mars speech). 570 Doctors were poled on their top ten of 'non diseases'. ME/CFS got 13% behind such complaints as obesity and stick out ears. The list even had Diabetes on it! fibromyalgia and gulf war syndrome were also on there. As you can imagine it caused quite a stir with various patient groups, generating a lot of debate. It just goes to confirm my absolute lack of faith in your average doctor.

    On a more positive note the new ME test from Dr Kenny Meirlier could be a breakthrough. I like the welcome message on 'ME Information Internationals' web site 'time is running out for the disbelieves' one day soon we'll have proof!

    GROUP MEETING ...................* no meetings have been arranged for this quarter *

    CONTENTS

    1. New test for ME. (also see back page). 2) Countess of Mar's speech in the House of Lords April 16th 2002.
    1. The April meeting etc. by Tundy. 4) Reply to the Standard. 5) My ME story by Kevin Tripp 6) More on new test.
    1. Quero an alternative approach. 8) The RiME petition letter / signature sheet ( please try to send it back by April 30th if poss. (now extended to end of June!)