I tried to send this to the CBC website, asking why they closed their piece to comment. Unfortunately, I keep getting bounced back, supposedly because I haven't filled out all the necessary fields--which I have. Maybe the e-mail is too long. Monday is a statutory holiday here, but I'm calling the CBC on Tuesday and asking who I should e-mail this to. If that fails, a friend's husband works on their website and may sneak me the direct e-mail address, so I can get there but avoid the mechanism built into the site itself.
FYI, here's the text I will be sending:
"I have no idea why the CBC's websites piece on the supposed benefits of graded exercise therapy for CFS patients was closed to comments. (I refer to
http://www.cbc.ca/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html.) Other pieces based on the study in Lancet have appeared in the L.A. Times and the New York Times, have been open to comments, and received many that were extremely well informed. Why is the CBC afraid of this? Why do I pay taxes to keep the CBC in business if it shies away from discussion of evolving science into an illness that affects 7 million people worldwide and NUMBER TK Canadians?
Because I have Chronic Fatigue Syndrome, it is hard for me to write at length. Therefore, I am copying here, with minor adjustments, my published comment on the New York Times piece:
"Chronic Fatigue Syndrome, more correctly called Myalgic Encephalomyelitis or ME/CFS, is not "chronic fatigue," as in "always tired." As comment #20 brilliantly observes, you might as well call Alzheimers "Chronic Forgetfulness Syndrome."
In fact, the World Health Organization defines Chronic Fatigue as a neurological illness for a reason. In addition, the Canadian Consensus Criteria, considered by most researchers around the world as the gold standard for diagnosing ME/CFS, puts ME/CFS in the "NeuroEndocrineImmune" category, meaning it attacks all three systems. Among the symptoms: orthostatic intolerance (meaning you can't stand up for long, because your blood pressure plunges and your heartbeat soars), post-extertional malaise (at its most severe, after walking half a block you are too tired to hold a pencil--and for some, even holding the pencil makes them too tired to turn their head on a pillow), swollen glands, constant fever, vertigo and visual disturbances, fibromyalgia, chemical sensitivities causing nausea, migraine and severe headaches, muscle pain and weakness, spatial instability and disorientation, and adrenal dysfunction. And of course, a damaged immune system means you are vulnerable to almost any bug out there, as well as malignant conditions like cancer. On average, ME/CFS patients die twenty years earlier than healthy people.
The British researchers have reached their bizarre conclusions because, in order to support the UK's long-entrenched belief that ME/CFS is psychomatic, they actually disallowed any of the above symptoms from the patients in their study. Applying their results to the reality of millions of ME/CFS sufferers around the world is absurd, and Tuller's article should have noted that oranges are being compared to apples.
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In 2009, ME/CFS specialist Nancy Klimas, whose practice was once busy with HIV, told the New York Times i that "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."
Indeed, since 2009, two ironclad studies involving (collectively) the Cleveland Clinic, National Cancer Institute, National Institute of Health, Food and Drug Administration and the trailblazing Whittemore-Peterson Institute have found a retrovirus (XMRV) and its family present in the blood in the overwhelming majority of ME/CFS patients. Retroviruses write themselves into your DNA and are incurable. There are only three known human retroviruses (HIV is the best known)."
CBC: Here are my questions. The Canadian diagnostic criteria for ME/CFS is based on a long list of symptoms caused by damage to the patient's neurological, immune and endocrine systems. The Brits, on the other hand, chose the patients for this study by telephoning citizens and asking if they had felt tired for more than six months.
So I ask you: What relevance does this study have to Canadians? Why do you not have a science reporter qualified to see this study in the context of Canadians, who are diagnosed (by the few Canadian doctors who are versed in our illness) according to the critiera developed by our own Ministry of Health? Would you publish the results of a cancer study from abroad that defined cancer as an impacted wisdom tooth as though its advice applied to Canadians struggling with the illness? And if you did, would you be surprised that the piece provoked spirited discussion?
I would appreciate an answer. (Again, my central questions: Why did you consider this study relevant to Canadians, when Canada defines ME/CFS so differently than the UK? And why was the article closed to comments?
Yours truly,
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I doubt if this will make any difference, but at least it relieved my anxiety a bit.
I find these negative pieces, appearing absolutely everywhere, to be deeply stressful. I am 90% bedbound, and every time one of these pieces is published, it's like the coffin of my life becomes smaller and darker. Well, let me switch metaphors. It's like yet another heavy stone has been laid on my heart, and I feel both physically and emotionally crushed. I have been working hard on accepting my illness, changing my approach to life and my values .... but the cruelty of these ignorant pieces is really beyond my coping skills. I suppose I could choose to ignore them, but I feel that we must fight back, and want to play my part in that. Every little gesture that way helps my dignity. I don't want to give that up -- and so I read the pieces.
How do people cope with this constant onslaught?
