1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

reaction to CFSAC OR "Witch-hunt mentality OR Heroes?"

Discussion in 'General ME/CFS News' started by shrewsbury, Oct 31, 2009.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    53
    hi all - not sure if this is the right place to post this - Administrators, feel free to move it if not. My reaction a few hours after the meeting, after passing out for some time, was the following. Not sure what it is or where it should go - never done anything like this before -

    But here's some of my reaction - what's yours?

    Witch-hunt mentality OR Heroes?

    When I was resting after the CFSAC meeting, a thought popped out of the rather empty fog that was my brain. The thought that there was a theme running through a lot of the testimony over the 2 days, not just from patients, but from doctors such as Lucinda Bateman and Dr Friedman. The theme of the witch hunt mentality.

    Then, as I started typing this up, I realized that, maybe, the title should really be heroes. That I should focus on the positive, the amazing people in this field, rather than on the negative, the entrenched bureaucrats, administrators and care providers, and society in general who want to keep the status quo and who will attack, demean, harm and dismiss anyone who is perceived to threaten it.

    Dr Bateman said that she runs a small business as a private practitioner as noone will hire her because of her association with ME/CFS. Her business runs in the red and she cant afford to pay for medical insurance for her staff. She keeps things afloat by working for pharmaceutical companies, I think it was nights and weekends, to pay some of the bills. She herself just got turned down by Blue Cross for medical insurance.

    Dr Friedman is a professor at a medical college. Because hes been on the CFSAC and testified before them, in addition to doing care provider training sessions outside of his university, his employer has sent him a letter, stating that activities like these are outside of his job description and he will be punished, terminated, for doing them. A colleague has already been fired for similar activity.

    Then there were the patients, care givers and family who made it to the meeting to share their stories.

    Mike Desin, whose photo of himself, a 6 3 man in his prime at a skeletal 102 pounds, left to die bythe medical profession, spoke almost as loudly as his words.

    LauralBs eloquent video showing her lying on the sofa, too fatigued to speak beyond a whisper, using the voice of her sister- in-law to describe her zest for life.

    And the testimonies of medical ignorance and unprofessionalism, almost to a criminal degree, by the CDC, ER rooms, care providers, universities, and insurance companies.

    Nightmares were all too familiar with. But all the horrors seemed almost balanced, or at least tipped towards hope by the participation of even more heroes, known names like Annette Whittemore, Dr. Peterson, Dr Bell, Dr. Klimas.... And names I had never heard before. Harnoop Singh, a medical student pleading for training. Wanda Jones getting the meeting webcast and helping the committee navigate government.

    Throughout the two days of the meeting and in the final recommendations a clear consistent rational message was stated over and over again:
    Centers of Excellence
    new CDC leadership
    using the Canadian or Fukuda 2003 definition instead of one that includes people with depression and is contrary to all the current research
    research into the cause of ME/CFS and the various modalities currently showing some success in symptom treatment
    diagnosis and treatment for patients
    training for care providers,
    medical curricula and board exams that include ME/CFS,
    protection of the blood supply
    and of course money

    Im too tired to write more. There were many other amazing participants, from the public, from the medical community, on the committee and from other government agencies.

    To all those heroes whose names I missed, I salute and thank you.

    To all the Mcarthys, the Salem witch hunters, the inquisitors and the ignorant, I hope you never experience being on the other side of the hunt.

    Personally, the heroes won out for me over these two days. I have hope that proper diagnosis & treatment for us, that education for care-providers, and that money for research will be here in the not too distant future.

    And the witch hunt will end. The heroes will take the day. We will be healthy again.
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,524
    Likes:
    4,918
    Thanks for this.

    However (and I should probably could say this on lots of threads), people have to be careful when they ask for education. Personally I would not be happy for doctors to be taught that what patients need is graded exercise therapy (GET) and CBT based on GET. But education courses esp. by random professionals are much more likely to recommend them than many treatments professionals use but for which there isn't a good "evidence base" (randomised controlled trials).
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    heroes

    I agree, Peterson and the others are heroes. Although not at this meeting, Anthony Komaroff can not be left out. Also, others in other countries, particularly U.K.

    Where would we be without these true doctors who are willing to make great personal sacrifices for us against disbelief.

    Their compassion and ability to see the evidence without bias is the reason we have this great announcement.

    I think it may be time for Hillary Johnson to write another book. This one can be about the success instead of the failure.

    Tina
  4. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    53
    thanks for the thanks Tom!

    Do agree that that warning "be careful what you wish for" has merit

    The call for care-provider education was based on the Canadian and/or Fukuda 03 definition and part of a nation-wide plan. The experts on the committee are trying to bring the US out of the dark ages and up to present-day science. I f I remember correctly, the Canadian definition specifically states that CBT is of no treatment value, and that exercise has to be very carefully considered and monitored as it can be more harmful than good with PEM.

    It's a funny thought that maybe we should be thankful that there hasn't been care-provider education in the US and the UK as it would most likely at this point have been based on the out-of-wack theories of 2 whackos! That ignorance is better than mis-informed. An appropriately gruesome hallowe'en thought!

    if:)
  5. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    This is what concerns me. What in the heck is going on? Why would this be? Who is pulling the strings here and what do they have to lose if CFS/ME becomes legitimized as a biological illness in the minds of the mainstream medical community?
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,524
    Likes:
    4,918
    Thanks Islandfinn.

    I think you make some good points.

    I think I might make another thread on this as I don't want to hijack this thread. But unfortunately I have problems with even what Dr Bateman and also to an extent, what Dr Klimas say about exercise programs. I think their exercise programs are more suitable for people with FMS.

    They're great on other things.

    And it's so easy once doctors hear that exercise helps/exercise is an evidence-based treatment to think that patients can get back to normal - because if exercise helps, it should help patient at any level to do more.

    Anyway don't want to hijack your thread - will try to post this on a new thread (and people can have their say there).

    Edit: New thread started at: http://forums.aboutmecfs.org/showthread.php?t=902 - so if you agree or disagree with me, maybe best to do it on that thread rather than this thread being highlighted by the issue. islandfinn, you can comment also (including feel free to post what you already wrote on education).
  7. Anika

    Anika Senior Member

    Messages:
    135
    Likes:
    1
    U.S.
    New Jersey Medical College and CFS - Cause for Concern?

    I also was listening during the Kenneth Friedman statement about his activities relating to CFS creating issues with his employer - the first I've heard of this. Friedman is a professor of physiology and pharmacology, I believe, at New Jersey Medical College.

    This is a significant concern, particularly since he mentioned that another colleague had left the school because of pressures related to CFS activities. I'll have to watch for specifics of what he said when the videos or written statements come out. I am concerned that he might have been referring to Dr. Benjamin Natelson, a highly respected researcher and clinician who used to be at NJ Medical and has since left and moved to New York. Whoever the colleague was, I don't think Friedman said the colleague was fired, but there are plenty of ways to bring pressure.

    In fact, I think one of the original three CFS Centers of Excellence used to be at this school before the Centers were all defunded. So the possibility that at this medical school, things have shifted from being a leading center in CFS research and clinical care to CFS-related activities being penalized or worse, is quite alarming.

    If anyone gets more facts or details I hope you'll share them with us.

    Part of this could be a consequence of lack of funding associated with CFS research and other activities. Academia wants/needs its teachers and researchers to attract funding. There is no question but that most researchers and clinicians in CFS have paid a personal price in terms of income and/or career opportunities (Lucinda Bateman made the statement, but it could have been made by others, like Dr. Peterson, Dr. Klimas, etc.), and this is one of the things we need to correct, through advocacy to increase funding by public and private institutions and through our own out of pocket contributions, however humble.

    I hope there is not something more insidious going on, in terms of pressures being brought to bear by companies with a financial interest interest in keeping CFS in the "dark ages" - why do insurance companies (in particular, disability) spring to mind? When looking for explanations, it is always worth looking for reasons that involve dollars.
  8. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    53
    Hi Anika

    Thanks for more info re Dr Friedman and the New Jersey Medical College. I think he said another colleaugue had bben made to leave, but as you say, one can be forced to leave without actually being fired. The webcast should be posted on the CFSAC site soon.

    I'm new to the American ME/CFS scene. Didn't know there had been 3 CFS Centers of Excellence, which then got defunded.

    I do know lobbyists and wealthy special interest groups have lots of political power inthe states - insurance/disability companies, pharmaceutical cos.... so wouldn't be surprised if they hadn't played a part in swaying past policies and funding decisions.
  9. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Thanks for explaining that Anika. My wheels are turning... or spinning... or both. lol

See more popular forum discussions.

Share This Page