meadowlark
Senior Member
- Messages
- 241
- Location
- Toronto, Canada
In case it's of interest, the comments were still 99% appalling at 10:47 a.m. I got an sudden surge of energy, so I wrote this response. It may have some errors, which is not good, but it's the best I can do today, and at least it presents the case for science in more detail than others:
"The ignorance displayed in most of the first 60 posts is appalling. Some posters intend to be cruel. Others don't mean to be, but that is the effect.
Chronic Fatigue Syndrome, more correctly called Myalgic Encephalomyeletis 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. And 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.
.
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).
To those who dismiss the illness as a psychological condition of malingerers ... I suggest you present your case to the institutes I list above. Your rigorous scientific method (i.e. "some self-diagnosed person I know") will be of particular interest."
I'm now terrified that Tuller did note this, and need to check. If so, I'll do a follow-up correcting myself.
"The ignorance displayed in most of the first 60 posts is appalling. Some posters intend to be cruel. Others don't mean to be, but that is the effect.
Chronic Fatigue Syndrome, more correctly called Myalgic Encephalomyeletis 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. And 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.
.
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).
To those who dismiss the illness as a psychological condition of malingerers ... I suggest you present your case to the institutes I list above. Your rigorous scientific method (i.e. "some self-diagnosed person I know") will be of particular interest."
I'm now terrified that Tuller did note this, and need to check. If so, I'll do a follow-up correcting myself.