Tom points out:
A case control study of premorbid and currently reported physical activity levels in chronic fatigue syndrome Wayne R Smith , Peter D White and Dedra Buchwald BMC Psychiatry 2006, 6:53doi:10.1186/1471-244X-6-53 http://www.biomedcentral.com/1471-244X/6/53
But the annoying thing is a lot of the paper involves them impugning the patients perceptions (after they asked the patients about their current and previous activity levels), saying who can trust these patients perceptions for reasons x, y, z, etc. This is despite them admitting, which they slip in in the first paragraph, that "The high levels of physical activity reported by patients have been corroborated by their spouses, partners, or parents [13]." So despite them knowing that, and the data they collected, they spend most of the time trying to build up a case to say the perceptions are likely dodgy without any data to show this. This is despite them not collecting any data in the study to show the patients perceptions were wrong.
Michelle writes:
I keep trying to wrap my mind around what happens to these doctors/researchers also. I listened to James Jones's talk that you posted on Co-Cure a few weeks ago and have been meaning to blog about it. It starts out well enough, but eventually his talk becomes peppered with "these people" and before you know it, he's talking about how it's important to train "these people" to understand that activity is good and laying on the couch is bad. It made me wonder if researchers like he and White have internalized some strain of Calvinism in which they can't handle the idea of people not working
At one point Jones gives a case study of a woman diagnosed with CFS who spent all her time on her couch or in bed and left her children "to their own devices." Now, add to this that a lot of us with ME/CFS are overweight (which may well be part of the pathology of the disease) and I do wonder if physicians and researchers like White, Jones or Buchwald can't *not* think of this illness as some pathological form of laziness -- that we just give up on trying – even if White or Jones may have come around to Reeves's view (which also may be grudgingly) that this is a seriously disabling disease.
Of course, my own experience is that we constantly need to be told that it's *okay* to lay on the couch. And, again, when I do slow down and sleep a lot, I actually start feeling *better*. Not cured, mind you. But better.
Btw, thanks for taking the time to put that Dutch study on Co-Cure through Bablefish. Initially it didn't sound all that significant since the abstract made it sound like it was just a study of ME/CFSpatients saying CBT didn't help. But the fact that more patient were not working by the end of the study than were working or had gone back to work was very significant.
Erik observes:
"CFS" was intentionally initiated as a "start from scratch" syndrome in order to set aside the possibility that ME and CFS were connected. This was SUPPOSEDLY done in the name of science and research - as if "We don't KNOW if they are connected, so we are starting afresh" but the REALITY of the identifiable immune abnormalities that had to be excluded in order to devise this "CFS research tool" indicate that overlooking the ME connection cannot have been any kind of mistake. Once you "know something", you cannot "unknow it" unless you have Alzheimers.
The pretense that the CDC was unaware of these immune abnormalities is proof of their information suppressing intentions. It amazes me that after twenty years of CFSers watching the CDC "unknow" information, that CFSers still speak of this as if it were an oversight or honest mistake that is waiting to be corrected.
Have you seen my story of the very first "CFS" meeting? It would have been so easy to stop that lone denialist doctor who came to Incline to apprise us that our illness was nothing more than mass delusion through collusion with two suggestible doctors. All we would have to have done is point at the immune abnormalities that Dr Cheney and Dr Peterson identified and demand that the "trivializer" account for these before he did any more theorizing. Instead, the group told those of us who TRIED to speak out, "don't argue with the doctor. It won't do any good. That attitude won't help".
We had him entirely outnumbered, yet by virtue of the group mentality, his view dominated us all - even though we had the facts and he did not. All we had to do was stand up for the truth, but everybody sat down. This is how we got to where we are.
-Erik
"All that is necessary for the triumph of evil is that good men do nothing." - Edmund Burke, Irish orator, philosopher, & politician (1729 - 1797)
For Research on Chronic Fatigue Syndrome ( CFS ), visit the List's Website at: http://www.cfsresearch.org/
From Jean Harrison:
Someone kindly sent me a link to another article about Cher. This time it mentions that she was diagnosed with Epstein Barr in the 1980's. Of course the name CFS did not come to use officially until 1988: "I was sick a long time," she says. "I went to Germany for some medicine and treatment. They have things overseas we never dreamed existed. When I was first diagnosed in the late '80s, I had doctors telling me I was crazy. I was sick constantly and almost died from pneumonia. You never lose it, and it really takes the life out of you." http://www.usatoday.com/life/music/news/2008-02-06-cher-side_N.htm The more the article is emailed, the more importance the news media gives the subject. Also there is an area in which you can add your comment. What was it she found in Germany? What ever it was seems to have helped her a great deal. Also it's very obvious from this article that Cher is thrilled to be able to work again. And that she hates being sick. Jean Harrison
* * *
I’m glad that Cher has finally admitted that she was diagnosed with CFS. The question is, whether she will "do the right thing" and like Michael J. Fox (Parkinson’s) and David Hyde Pierce (Alzheimer’s), throw her considerable star power behind an effort to publicize and fundraise to help the rest of us, or whether she thinks she has done enough just by coming clean in an interview.
If anyone knows how to contact Cher or her agent/manager, please get that contact information to me. You can post it as a comment to the blog or e-mail it to me privately.
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