• KICKBACK 42 .........19/08/02
  • MEWL Newsletter Summer 2002

    1) The Clinical Identity of ME by.M Ramsay.view 2) M.Hooper's letter to the British journal of General Practitioners.
    3) Enforced rest at onset appears best approach.view 4) Wispa's ME story. 5) Simon Lawrence's letter to the MCR..
    6) Involvement of onchocerciasis in ME/CFS by John Brown.view 7) A remission by Kevin. 8) Mary schweitzer's story 9) RiME form, MRC questionnaire and explanation. 10) Dr.Richard L Bruno. 11) Oral dosed Ampligen patent.

    Yes, the RiME Petition is still running and it's presentation the will take place at the Medical Research Council on 2nd September followed by a short meeting. The closing date for Petition signatures will now be 25th August.

    ME really is black and white. OK, some so called ME sufferers might simply have post viral fatigue, and will hopefully get better in weeks or months. Some others might be suffering from a psychologically based condition that would respond to psychotherapy or anti-depressants. But true ME has classic, very definable symptoms. See Ramsay's article on page 2. (It was written some time ago but is still as true today) and 'Information for clinicians and lawyers' by E.P. Marshall M. Williams and M. Hooper. (not included) I recently heard someone describe ME like being hit by a bus, which seemed a good description. One minute you are normal you have life, you have strength, you feel human. Then wham it hits you and you are mess. Most can remember the exact day it struck. The symptoms are oh so very clear. I have often listened to other sufferers' descriptions of their condition and eerily thought they were reading my mind.

    Excerpt from: the times magazine of 25 May 2002

    "I had episodes of fatigue, depression, dizziness and aching limbs. But it's easy to assume you're are just overdoing things… One day I suddenly couldn't walk properly" - Kate Hilpern on young onset Parkinson's disease.

    On reading the above headline you'd think, as I did, it was a description of ME. It's actually part of a very informative article about Parkinson's disease. Interestingly there is no test for Parkinson's disease, like in ME, the diagnosis is a clinical one made upon the symptoms! Like MS and TB, Parkinson's was also once considered to be a psychiatric disorder. Decades ago TB was thought to be a disease caught mainly by artists and 'sensitive types'. Nothing to do with bacteria that bred in poverty stricken environments. So what's new.

    This brings me back to the RiME petition. I mentioned it to a sufferer from the SW London group who wasn't even aware of it! Anyhow, big surprise the RiME petition is still running. We'd, I'd stopped collecting in April, then June. So much for organisation! They have over15,000 signatures so far, which is great but imagine if every sufferer got just 2 signatures (theirs and their carers), we'd have 400,000 Signatures!. With this in mind I contacted a neighbouring group to ask how many they'd collected. I was amased, it appears although they knew Paul and felt it a good idea, 'what would more research achieve' I could not believe my ears. I pointed out that unless we stand up and be counted we will be getting more research but psychologically based research.. The petition specifically asks for research into the physical causes of the disease. I was then told about members who were trying mind/body therapies at which point my heart sank. It appears we not only have to fight the ignorant doctors, the psychiatrists and ignorant members of the public but also the enemy within. Those sufferers who for what ever reason believe the lies that ME is a lifestyle disease that you can think your way out of. You can't, it’s the first thing we tried (along with exercise). Silence is complicity and the phrase "if you're not part of the solution, you're part of the problem" is very true.