May. 13th, 2010

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It is M.E. awareness week.

And I apologise for just copying and pasting a friend's Vox entry as it really says it all.

"Last year I was still a bit ignorant about my illness, M.E, more specifically the politics surrounding it and how damaging the use of of the bogus term CFS, CFS/ME or ME/CFS is, which I've never used or held with, but I didn't realise just *how* damaging this is to us as sufferers. I will never use that awful ribbon again that's for sure!

'The term M.E. is medically and diagnostically correct, but it is of course only correct when it is applied to people who actually have M.E. and fit this very distinct and unique description and definition of a well-defined scientifically measurable neurological disease.

Myalgic Encephalomyelitis is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions. This is always damaged in M.E. – hence the name Myalgic Encephalomyelitis which means My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.

However, of course this damage is NOT seen in all those with post-viral fatigue syndromes and so on who merely qualify for a (mis)diagnosis of 'CFS.' 'CFS' and M.E. are NOT the same and the vast majority of those given a 'CFS' misdiagnosis do NOT have M.E. (nor any other distinct neurological disease.)'

For more information on it see these articles located at the best ME resource there is http://hfme.org/ (The Hummingbirds' Foundation For Myalgic Encephalomyelitis.)

ME is NOT: http://www.hfme.org/meisnot.htm

ME Name: http://www.hfme.org/mename.htm

Anti-Advocacy: http://www.hfme.org/meantiadvocacy.htm

A powerful statement to help people understand just how awful this disease really is:

'In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS Clinic at Oregon Health Sciences University, found that ME patients whom he saw had far lower scores on the Karnofsky performance scale than his HIV patients, even in the last week of their life. He testified that an ME patient, "feels effectively the same every day as an AIDS patient feels two weeks before death." But in ME this extremely high level of illness is NOT short term - if it does not end in death as it sometimes does - it can continue uninterrupted for DECADES!'
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As Christina put: Myalgic Encephalomyelitis Awareness Week. A powerful statement to help people understand just how awful this disease really is: 'In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS Clinic at Oregon Health Sciences University, found that ME patients whom he saw had far lower scores on the Karnofsky performance scale than his HIV patients, even in the last week of their life. He testified that an ME patient, "feels effectively the same every day as an AIDS patient feels two weeks before death." But in ME this extremely high level of illness is NOT short term - if it does not end in death as it sometimes does - it can continue uninterrupted for DECADES!

I've got a lot of pictures here that explain things in little bite sized chunks, I'm feeling like a (barely) re-animated corpse today so these are helpful as I don't have to write so much.

It seems most of the groups and biomedical research places I linked to last year have since sold out to the highest bidder (big pharma and insurance company funded) and are now doing nothing helpful for M.E sufferers at all, just perpetuating the myths. *sigh*

The only other great website that I know of is that of true M.E expert Dr Byron Hyde: http://www.nightingale.ca/



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