• KICKBACK 43 11/10/02

    MEWL Newsletter Autumn 2002

  • 1) Letter from RiME .view 2) Sample letters handed to the MRC.view 3) RiME / MRC meeting 2nd Sept 2002. view

    4) Simon Lawrence's letter to the MCR..view 5) Fish Oil Tablets to fight ME. 6) Dr Abhijit Chaudhuri's research.

    7) Graded Exercise and Abnormal Phospholipid Metabolism by S Ralph. 8) Creatine and Choline - old news?

    9) The trials of getting signatures.view 10) End of my remission.view 11) Severity in ME and MS.

    12) BMJ RR - round 2 by Paul. 13) Chronic Fatigue Syndrome by Dr Burke A Cunha. 14) MRC strategy.

    Hi to everyone,

    Firstly thanks to all those who got signatures for the RiME (I just found out its pronounced 'rhyme' not 'rim-me') petition. I must say explaining the petition to the general public and asking for a signature is not as straight forward as you'd think. It seems the public are in two camps, those that have read the derogatory headlines, Yupie Flue, etc. and those that know a sufferer and are pleased to sign. It should never have happened. As I said in Kickback 42, if each sufferer and their carer alone signed we'd have 400,000 signatures. As it was they got a commendable 16,002.

    I am totally dumbfounded that so many local ME support groups appear to be run by non sufferers, or very mildly affected sufferers, or those suffering from some other fatigue state. This illness is difficult to understand even for those who have it. But it has been clearly defined on many occasions by the likes of Ramsey etc. There is so much rubbish put about by the psychiatrists and certain main ME charities. We don't need more confusion coming from the local groups who supposedly represent their suffering members. Any person suffering from ME, if asked 'is your illness, a mental illness' they would vehemently reply NO. If you then asked them 'should the government waste 2.6 m on psychiatric research into ME' they would have no hesitation in saying NO. Then why did these local groups and the main ME charities not publicise the RiME petition? Any sufferer who seriously believes GET or CBT will get rid of their ME needs to see a psychiatrist. Any sufferer who permanently improves after exercise does not have ME, or was getting better (or remitting) without such intervention. They might have been suffering from some psychiatric disorder and not from ME.

    And so we seem to have many local 'ME' groups whose agenda it seems is to hold coffee mornings and produce lifestyle magazines with stories of 'if you really want to recover from ME you will' and 'pacing, positive thinking and forcing myself to take on new challenges got me better'. And we wonder why the general public is so confused. (The above passages come from a recent 'ME' newsletter)

    I've never met a sufferer who didn't want to recover. All those I've spoke to would give anything to get well, and they don't need forcing to take on new challenges, on the contrary they need forcing to stop them trying. Hopefully as more sufferers get access to the Internet they will be able to read the truth they already knew. Or make up their own mind, and be in contact with like thinking others.

    Please write to your MP asking that RiME be allowed to address the All Party Parliamentary Group on ME. Tony Wright MP, chair of that group turned down earlier requests for RiME to be present. If enough MPs are aware of our request, the 'powers that be' might give in. Surely, as a spokesperson for the views of so many ME sufferers it is a travesty that RiME is not being allowed to represent us. Perhaps sending a copy letter to Tony Wright himself.

     

    GROUP MEETING * Again no MEWL meeting has been arranged for this quarter, if anyone can host a meeting please let me know. Helen our usual hostess might be able to have one later, those interested keep in touch

    Network Mesh Meeting Sunday 17th November (Details Withheld)