Here is another batch from the P2P documents NIH produced in response to my P2P FOIA request.
These are documents relating to the P2P (then called the Evidence-based Methodology Workshop) organizational meeting. The meeting took place on February 19, 2013. It lead to the ME/CFS P2P Working Group, which organized the Workshop this coming December. This was basically the meeting to decide whether to have a meeting to decide whether to have a workshop to decide the future of ME/CFS research.
Part of the meeting material for the organizational meeting (starting on page 25) was the proposal for the Workshop. It shows a profound lack of acknowledgment of the seriousness of this disease. For example, page 1 of the proposal states:
The common aspect of the illness for most affected individuals is overwhelming fatigue or malaise ….
Newsflash: No, fatigue (or worse, malaise, “a slight or general feeling of not being healthy or happy“) is NOT the common aspect for ME/CFS. Fatigue is a symptom for many diseases from cancer to depression to iron deficiency as well as the result of many normal-life activites, such as having a demanding job, overexercising, being jet-lagged or caring for infants. The hallmark symptom for ME/CFS is a post-exertional crash—an exacerbation of the multitude of serious ME/CFS symptoms following physical or cognitive exertion—that is completely disproportionate to the exertion. No true expert in the field would argue that point. With such a completely wrong premise on the part of NIH, how could the outcome of the P2P possibly be anything but a disaster?
The proposal goes on to state that activities, such as “making meals, brushing teeth and caring for children are a burden.” (emphasis added] A burden? Seriously? Yeah, it’s really inconvenient when we have to choose between eating and brushing our teeth. How annoying! And since CDC “research” claims that our symptoms are the result of childhood abuse, is it any wonder that we really do not have much interest in our kids? Maybe the real reason I am separated from my four-year old daughter is not that the FDA refuses to approve a safe and effective drug, Ampligen, for a disease that has no approved pharmaceutical treatment; maybe it is that raising my girl is a burden for me. I guess I better add a major sarcasm alert right now. Obviously, this sad (but not unusual) excuse for a CDC study is an abuse of the term “research.” Doesn’t mean it can’t be used against us over and over.
Stay tuned for more documents. I am categorizing them by topic (and chronologically) to help the community digest them more easily and am hoping to be able to release a substantial number of documents tomorrow.