alex3619
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@Andrew, do you have a reference &/or reference and page number for discussion of the review mechanism for an IOM report?
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@Andrew, do you have a reference &/or reference and page number for discussion of the review mechanism for an IOM report?
Do we invite the press to this events??? Is there a formal process to say hey we are doing a demonstration or there is an important meeting full of controversy??? I am curious if we do it and they don't come to cover it, or they don't cover it because we do not have anything in place to cover this events/???
Iirc, on the website it said that the committee had to respond in writing to each point the reviewing panel makes, but don't have to change the report.
I wonder, after the fact and they fail yet again, if we should get a petition together for statement of No Confidence in the IOM process?
In reference again to censorship and from Jeannette Burmeister's blog, http://thoughtsaboutme.com/2014/02/02/who-is-causing-facebook-to-block-tullers-article/#comments
"On Monday, January 27, 2014, David Tuller published, on Buzzfeed, a well-researched and factual article”—How “Chronic Fatigue Syndrome” Obscures A Serious Illness“—on ME/CFS and the government’s efforts to redefine the disease. As of right now, 78,331 people have viewed the article. Also, almost 8,000 people “liked” the article directly from the Buzzfeed site by using the Facebook like button.
Some time last night or this morning, the Facebook share button for this article was disabled by Facebook and Facebook blocked any direct sharing of the piece from the Buzzfeed site. The error message I (and others) received from Facebook when I tried to share the article to confirm the reports of the blocking said, “Your message couldn’t be sent because it includes content that other people on Facebook have reported as abusive...”
I do not think CPET is in the same category. I don't think we can call it diagnostic as yet, but I think it has (and this is not published, its my current interpretation) close to 100% specificity, and over 95% sensitivity, though I might be interpreting this wrong. In any case the results look far more reliable than most tests doctors rely on. I am concerned though that other diseases may show the same pattern, I don't think the testing has been wide enough. If this is so, its still a test for disability/function in ME, and possibly for PEM.
Maybe GWI is in fact ME/CFS, just with a specific pattern of onset.
Good job taking screen shots!I was posting a response to a particular comment on the NPR article, only to get an error message that said the comment I was responding to had been removed by a moderator. Here are snipped-shots, before Big Brother sent it down the memory hole ( - sorry I didn't cut-and-paste as well):
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That's what I thought I saw too. But when I went back, I could not find that statement. Do you remember where it is?
May I post your screenshots to Facebook?I was posting a response to a particular comment on the NPR article, only to get an error message that said the comment I was responding to had been removed by a moderator. Here are snipped-shots, before Big Brother sent it down the memory hole ( - sorry I didn't cut-and-paste as well):
View attachment 6361 View attachment 6362
Or this comment: "How about renaming it the Lili Von Shtupp Syndrome? (With my sincere apology to those who suffer from this truly dreadful affliction. I just couldn't help myself.)"
Von Shtupp is the character from Blazing Saddles who sings, "I'm tired, so tired..."
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