P2P FOIA Documents, Part 3—NIH Organizational Meeting: ME/CFS is a “Burden” for Patients

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.

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9 Responses to P2P FOIA Documents, Part 3—NIH Organizational Meeting: ME/CFS is a “Burden” for Patients

  1. Carrie says:

    Thanks so much for sharing these documents, Jeannette. Indeed, “burden” is a poor, poor word choice. People with CFS are sick, not burdened by life! Malaise? Clearly they still don’t get it.

    It’s hard to see a beneficial outcome from any of this. Nevertheless, we need to know what’s going on. These are OUR tax dollars at work.

  2. Ess says:

    Continuing thanks for all of your work on P2P FOIA documents, Jeannette.

    BURDEN?? They have ‘quite a way with words,’ don’t they. Now let’s just tell ‘them’ this—HHS, CDC, NIH–IOM–P2P, your HARMFUL and DISingenuous actions are a HUGE BURDEN to the ME/CFS patient community.

    We want IOM and P2P stopped as per the ME/CFS Experts’ and Researchers’ letter to then Secretary Sebelius, September 2013.

  3. Thanks so, so, much for all of your work that benefits all of us, Jeannette. Totally agree re “malaise”.. what a silly definition.

  4. Katharina says:

    Thanks a lot for this third batch!

  5. Kathy D. says:

    Thanks so much for your hard work. It is absurd that you are separated from your family because you have to obtain ME/CFS treatment far from your home.
    And on that word “malaise.” Every time I see “post-exertional malaise,” I see red. Post-exertional collapse is more like it. They just don’t get it. When one has to do errands in the neighborhood, and has to find chairs in which to rest while doing one to two hours of errands. Going to the grocery store is often impossible, so one scrambles to see what old canned goods are around.
    Doing laundry? Cleaning the apartment — what is that? This is all hieroglyphics to the national health and research agencies.
    So, you’re fighting for many of us, and I thank you for your dedication and hard work.

  6. Kathy D. says:

    I just read several articles about the new study just published in Radiology by the Stanford School of Medicine about brain abnormalities in CFS. They have found 3 areas of brain abnormalities. It’s in SF Gate, Today.com, Bloomberg Business Week. It sounds very promising.
    Maybe in a race against time, we can use this information to our advantage with the powers that be, even more evidence of the serious and physical basis of this disease.

  7. Sherri says:

    Why does this disease attract the most wishy-washy of terms when it is sheer hell to live with? We’ve had “chronic fatigue” since Incline Village, and now the newest best research is using “malaise”. PEM — Post Exertional Malaise. Are they kidding? Isn’t there a stronger, more vivid descriptor out there? I wish we could nip these terms in the bud before they become standardized and continue to contribute to our status as the joke wastebasket of diseases.

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