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NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16

Discussion in 'Petitions' started by Nielk, Feb 9, 2016.

  1. Nielk

    Nielk

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    Please read, and if you agree sign this petition initiated by MEadvocacy.org calling for the cancellation of NIH clinic's fatigue study as well as Dr. Nath's presentation of this study at the CDC Grand Rounds on February 16th.

    http://www.meadvocacy.org/http_www_meadvocacy_org_stop_nih_study

     
  2. A.B.

    A.B. Senior Member

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    It just needs a few protocol changes and it will be good.
     
    Valentijn and Dolphin like this.
  3. duncan

    duncan Senior Member

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    The protocol changes it might benefit from would likely mean canning half of the existing copy, and over-hauling most of the other half.
     
  4. Nielk

    Nielk

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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  6. duncan

    duncan Senior Member

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    The NIH Lyme group is, in the eyes of some, stuck in 1994. Determining who still has Lyme vs who has been cured can appear at times to be a crap shoot.

    How can we hope this NIH effort recruits appropriately for ME/CFS ( a contested disease) if one of two specified control groups is hopelessly mired in controversy?

    Then there is the FMD group - here we are damned if we do say something, damned if we don't - the same position as the BPS school has seemed to delight in placing us over the past many years.

    If it quacks like a duck, it's a dog. They need to fix this, and fix it proper.
     
  7. Nielk

    Nielk

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    227 signatures so far. We are trying to get to 1,000 by Sunday midnight. If you agree with the petition, please take the time to sign and ask family and friends to sign as well. This is open to any nationality.
    Thank you.
     
    dancingstarheart likes this.
  8. Ecoclimber

    Ecoclimber Senior Member

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  9. Nielk

    Nielk

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  10. Marco

    Marco Grrrrrrr!

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    Yes and he makes some very good points which are worth considering before rushing to sign any petition.
     
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  11. Nielk

    Nielk

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    There is a whole thread with everyone's take on this proposed study where you can voice whatever opinions you have. If you don't like this petition, don't sign it. Apparently, many in the community do agree with it.
     
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  12. caledonia

    caledonia

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    There are so many things wrong with this NIH study. The study is designed the way it is because the NIH has an institutional bias against our disease. See Mary Dimmock's document Thirty Years of Disdain for more information.

    If I was designing a study, it would be like what Ron Davis is doing - using a well characterized group of very severe ME patients, and studying all aspects using state of the art technology.

    If I wanted to contrast with people who had an infection and who recovered, it would certainly not be with Lyme patients - another very controversial disease. The testing for Lyme is very problematic. I would use Epstein Barr or something like that.

    I would not include people with psychiatric disease of any kind. It doesn't make any sense unless you believe ME has a psychological or psychiatric basis.

    The problems with the Reeves definition are well known.

    If the basics are screwed up, it doesn't matter if you study blood, urine, genetics, exercise capacity, yada yada yada.

    They couldn't have made a worse study if they tried. This is garbage in - garbage out.

    I encourage people to sign the petition, and also send a donation to a real study (aka Ron Davis's study).

    http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/
     
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  13. Nielk

    Nielk

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    259 signatures so far, going for 1,000. Thanks to all who have signed.
     
  14. Nielk

    Nielk

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    269
     
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  15. Nielk

    Nielk

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  16. Kati

    Kati Patient in training

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    Sorry nielk, not signing this. cancel study presentation at CDC grand rounds? Hell no, I want to hear what is going to be said about it.

    The more information we get at this point in time, the better. The leaked study designs rings a lot of alarms in my head, but at this point, i want to know what they have got to say for themselves. i will make up my mind after that.
     
  17. jadam914

    jadam914 Foggy member

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    People MUST stop putting "empirical" with these criteria even in mentioning them like they did on the petition. There is NOTHING empirical by definition about Reeves. Saying something is empirical implies you are validating it.

    Some one needs to remove such inflamority wording!
     
    Last edited: Feb 11, 2016
  18. Nielk

    Nielk

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    I respect your choice. Don't forget, this meeting if for educational purposes for thousands of clinicians in the US. They are signing up because they get continuing educational credits. I believe that there is the risk of irreparable harm to have Dr. Nath present a study of "fatigue" in CFS patients. Once this takes place, there is no taking back the information that these clinicians hear. Even if they end up changing elements of the study, these clinicians will not know.

    There is way too much stigma attached to us patients already. All this will do is reinforce it. I'm not willing to take that chance. And many others agree.
     
  19. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    It is unfortunate that the NIH fails to consult or communicate with the patient population and that the only way we know what's going on is when they err (leaked design) or when they speak publicly to 'professionals' and we hope to hear from the back of the room.

    A petition is one way patients get to communicate. There is value in speaking up for what is wrong with their design.

    Even if the NIH chooses not to hear.
     
    leela and Nielk like this.
  20. Kati

    Kati Patient in training

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    Thank you for respecting, @Nielk, it gives me hope that we can work together on common goals and common views that we have. It is important in moving forward, to remember that while we have different views and approaches, that we are sick, and need and deserve health care, sound research, and respect from our governments.
     

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