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NIH publishes responses to RFI (Request for Information) on ME/CFS

Discussion in 'General ME/CFS News' started by Sasha, Jul 29, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Just got this email:

    Just reading #MEAction's report - well done, @JaimeS! :balloons:
     
  2. A.B.

    A.B. Senior Member

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    All the responses from researchers and health care professionals come from a biomedical view of the illness.
     
  3. worldbackwards

    worldbackwards A unique snowflake

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    It's encouraging to note that certain people know where they aren't wanted.
     
  4. A.B.

    A.B. Senior Member

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    I interpret this as tacit admission that the psychiatric paradigm stands no chance in a fair fight with the biomedical paradigm represented by well informed and intelligent individuals. They are not even trying.
     
  5. Bob

    Bob

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    296 pages from patients.
    111 pages from researchers and clinicians.
    55 pages from patient organisations.

    A special Phoenix Rising prize for anyone who reads it all. :trophy::gift::bow::cake: (You might be very disappointed with the prize, unless you're particularly fond of emojis!)
     
  6. Mary

    Mary Senior Member

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    I'm impressed the NIH bothered to post patient input. I've just looked briefly at the patient comments/requests - they are overwhelmingly articulate, thoughtful, knowledgeable, etc. etc. etc. - well done all who submitted, and kudos to the NIH for making it available to all! :thumbsup: It's starting to feel like we're being heard .. maybe ...
     
  7. daisybell

    daisybell Senior Member

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    There are some amazing patient emails... I'm truly in awe... It's very powerful stuff.
    Huge thanks to everyone who contributed. You're stars! :star::star::star:
     
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  8. JaimeS

    JaimeS Senior Member

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    Thank you so much! As I said on the thread on the RFI, I basically wrote a graduate thesis, but Ben H clipped it down to a reasonable length -- what you see is in large part due to his summarizing abilities! :D
     
  9. Denise

    Denise Senior Member

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    Does it count if I skimmed all of the pages?
     
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  10. dreampop

    dreampop Senior Member

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    Wow, surprised how much focus on viruses there is. Thought we moved past this.
     
  11. A.B.

    A.B. Senior Member

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    Yes, the infection hypothesis is alive and well.
     
    Kati likes this.
  12. A.B.

    A.B. Senior Member

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    LDN has a large amount of support.
     
  13. Kati

    Kati Patient in training

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    I noticed many posts about LDN, as if a full LDN group had been briefed about writing comments to the NIH specifically asking for LDN studies.

    So maybe their campaign was successful in recruiting commentators.
     
    Esther12 likes this.
  14. A.B.

    A.B. Senior Member

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    Yes. The LDN related posts don't always seem to be related to ME/CFS but more chronic pain and opiod problems. I think you are right.

    I'm about 1/3 through the patient comments (probably won't finish) and most comments are good. There are unfortunately also some that are of little value. The overall impression is that the patient community largely agrees on about a dozen research priorities and barriers to research.
     
    Last edited: Jul 30, 2016
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  15. Kati

    Kati Patient in training

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    The patient comment starting at bottom of p 126 is quite insightful of the immense suffering and of the current state of affair in medicine and government administration when it comes to ME. 'Cookbook medicine' is truly what it is.

    Whoever you are, thank you for writing this.
     
  16. A.B.

    A.B. Senior Member

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    Re. that comment. I have also thought that the NIH and CDC could help change public perception by publishing an apology to patients.
     
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  17. Valentijn

    Valentijn The Diabolic Logic

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    Woohoo, time to break out "The Bob" again! :balloons::star::trophy::star::balloons:
     
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  18. A.B.

    A.B. Senior Member

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    Since I skimmed all the patient comments, I don't deserve the Bob prize for such sloppy work, but here are my impressions:

    Most comments are recommendations for research, some of them are very long and detailed. I would say that after the obvious recommendation to increase funding, the most popular recommendation is to prioritize development of diagnostic tests and research into biomarkers. Other popular recommendations (in no particular order) include doctor education, creation of centers of excellence, natural history of the disease, severely ill patients in their homes, immune system, microbiome, various stress tests (CPET, etc.) and PEM, brain imaging, metabolomics, agreeing on a (stricter) case definition, urgent need for treatment.

    A surprisingly, to me, number of comments speak positively about LDN and Ampligen and ask for clinical trials. Some LDN related comments might be from LDN users with other health problems. Rituximab trials have less support but are also requested.

    Some comments are from patients describing their story. How it started, what symptoms they have, their suffering.

    A few comments promote their own hypothesis.

    The ongoing infection hypothesis is still popular, in paticular enteroviruses. This might be a US thing.

    The heterogeneity of ME/CFS is reflected in how patients describe their illness. There is generally awareness that subgroups exist and that this is a problem that must be dealt with in order to move research forward.

    Nobody expressed support for a psychosomatic explanation. Several comments are critical of psychiatry and PACE.

    A common sentiment expressed is that of neglect, urgent need for treatment, poor attitudes from the health care system.

    Overall this seems good. Patients have somewhat different priorities than the researchers but there is a large overlap in how they view the illness. NIH can't say they didn't get good feedback :)
     
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  19. Sasha

    Sasha Fine, thank you

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    I saw a lot of calls to fund Ian Lipkin and Ron Davis.
     
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  20. Bob

    Bob

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    Yes, that definitely deserves a prize! :balloons::star::trophy::star::balloons:

    We'll have to dust down "The Bob".

    I disagree. That definitely deserves a prize. :balloons::star::trophy::star::balloons:

    But now I'm not sure whether Denise or A.B. should get the main prize: "The Bob"? How do we decide?

    BTW, "The Bob" is notoriously pretty useless and needs lots of attention, feeding and looking after!
     
    Snow Leopard, Comet, JaimeS and 5 others like this.

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