Thanks to LKW for passing this along:
ME AWARENESS MONTH 2007
Below is a plain text version of the IiME (Invest in ME) Flyer, on their site at: http://investinme.org/IIME%20Newsletter%20Oct%2006.htm
Their May 1 & 2, 2007 International ME Conference has just ended and no doubt will produce copious amounts of press releases and reports for all of us to read, also, as an illustrious group of the best researchers and advocates filled the roster. I applaud all of the massive efforts required to make this happen.
And I continue to ask:
Why does the the USA have no planned ME Awareness activities?
Why does it not recognise ME? (G93.3, ICD10)
Why does it do NO ME research?
Why does it ignore those of us so horribly ill with such a debilitating neurogenic illness?
ME AWARENESS MONTH 2007
A national campaign throughout the UK aimed at raising awareness of the neurological illness Myalgic Encephalomyelitis (M.E.) and publicizing events to raise funds for biomedical research into ME. Myalgic Encephalomyelitis (M.E.) is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). With at least 250,000 sufferers of ME in the UK alone, many of them children, ME is estimated (by parliamentary EDM 260) as costing the UK economy £3.5 billion per year and the true figure may be even greater.
No public funding of biomedical research is currently taking place in the UK so biomedical research projects are funded solely by the work of ME support groups and individuals. At present there is no medical diagnostic test for ME and no known specific treatment or cure.
Despite the impression often given by the press and psychological professionals, ME is not a psychological illness; psychological investigations (which have had the lion's share of research funding in the past) cannot uncover its cause and psychological therapies cannot provide a cure.
The varying symptoms experienced by many severe ME sufferers may include: visual problems, vocal/muscular limitations, general chronic weakness of limbs, cognitive problems such as memory loss & concentration difficulties, problems with balance and fine motor control, muscle pain, malaise, hypersensitivity, sleep & temperature disturbance, cardiovascular symptoms, digestive disturbances, neurological disturbances. ME is a multi-system illness and requires investment in biomedical research to provide treatment and a cure.
The recent case of Sophia Mirza, who died from ME, shows the urgency of funding research into treatments and in finding a cure. ME is five times more prevalent in the UK than HIV/AIDS.
During May 2007 events up and down the country will raise awareness of ME. Two ME charities - ME Research UK and Invest in ME are joining forces to arrange and publicise conferences and Have a Cuppa events for ME Awareness Month 2007.
On 1st-2nd May 2007 Invest in ME will be hosting the second IiME International ME Conference in London. ME Research UK will be hosting their conference in Edinburgh on 25th May 2007.
Other events around the world will be announced in the months leading up to May 2007 - with ME Awareness Day (12th May) being the focal point for the month.
Our aims are:
1. Funding research: With no public funding of biomedical research into ME we are hoping to attract more funding for research activities coordinated by ME Research UK. We hope that the government will recognize the high-quality research being carried out by scientists being funded by ME Research UK.
2. Raising awareness: ME needs more awareness from the public, politicians and healthcare staff. It is now the leading cause for long term absence from school. ME Awareness Month will be an opportunity to raise the profile of ME and allow more knowledge about the illness to be provided.
3. Providing a voice: 25% of people diagnosed with ME are severely affected - house-bound, often bed-bound, left with little help from the medical community, often made to struggle to obtain benefits and left to an uncertain and debilitating future.
* * *
The answer to LKW's questions about why the US takes the stance it does can all be traced back to decisions made early on:
"On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine." Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, Katrina Berne, Ph.D., page 10
To now admit that they were wrong is something that a government agency will never do.
We saw this last year when, in the lead-up to Awareness Month, CDC announced that they had found biological proof of CFS, and immediately, almost with the same breath, tried to explain away this biology with psychology.
My problems started with a 105 fever. While it may be possible to psychosomatic a 99 fever, I doubt there is anyone, even the greatest guru of mind/body control, who can psychosomatic all the way up to 105. I knew 20 years ago that the problem was a virus; CDC still refuses to accept that. They populate their studies with patients with psych-based fatigue and then cannot find the post-viral changes that would differentiate those of us with viral onset from people with depression.
Ken Fujioka, M.D. of the respected Scripps Clinic in San Diego says: "For a long time, we've known that viruses can get into your DNA and reprogram your body." Dr. Fujioka knows that. Patients know that. CDC seems to have great difficulty accepting that. To the great detriment of a million patients in the US alone, who get sicker from lack of treatment.
A fellow patient has observed that CDC does not listen to the patients -- CDC tells *us* what our symptoms are, and if we say that our experience is different, then *we* must be wrong. The best source of information is first-hand from the person who actually had the experience. But when we respond to CDC's description of that which they currently choose to call CFS with "I don't know what they have, but it isn't what I have", our own experience with ME/CFS is pooh-poohed so they can continue to espouse their psychological biases.
I've experienced it myself. When I tried to explain to a doctor that my problems started in mid-February 1987 with a high fever, I was informed in no uncertain terms that I was mistaken. This doctor who had never met me before, didn't know what my health had been prior to February, didn't bother to ask me any questions about my emotions, knew better than I did that I didn't have a virus, I had psychological problems related to my marital state. According to him, I never had a virus. He didn't have to explain the first-hand observations of the person who cared for me during the virus, other than to point out that he was the doctor and therefore he knew best, and that those of us who had what he didn't -- first-hand observations -- were mistaken because we were not doctors.
He refused to accept the opinion of a Professor of Counseling that I lacked the emotional component required for a psych diagnosis, that the "symptoms of depression" he noted were actually the symptoms you'd expect of someone with the flu. If he would not admit to a mistake in the privacy of his own office, then what are the odds of CDC making a public admission of error?