August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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NIH Telebriefing re ME/CFS - July 10 (open to international participation)

Discussion in 'Upcoming ME/CFS Events' started by Mary, Jul 7, 2017.

  1. Mary

    Mary Senior Member

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    I just received this e-mail today, so not much notice, but here it is. And I've attached a document (hopefully it works!) with international call-in numbers.

    We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on July 10, 2017, 12:00 until 1:00 pm ET. If you will be calling from the U.S., please use the following dial-in information for the telebriefing.
    Dial-in: 866-844-9416

    Participant passcode: 6930820

    If you will be calling from another country, please see the attached chart for your country’s access information.
    Please remember to RSVP to NIHME-CFSWorkingG@ninds.nih.gov if you plan to participate in the call.
    Thank you in advance for your participation and we look forward to an engaging, thoughtful and productive conversation.
    Regards,
    The Trans-NIH ME/CFS Working Group
     
  2. Mary

    Mary Senior Member

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    whoops - here's the document with the international call-in numbers.
     

    Attached Files:

  3. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks. Could you change the heading to July 10. Most people in the world read 7/10 as 7 October.
     
  4. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    A quick search revealed this from a previous telebriefing.

    This is really worth the time to read. :thumbsup:

    Or you can actually listen to it.
     
    Last edited: Jul 7, 2017
  5. Mary

    Mary Senior Member

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    Thanks! I never would have caught that .....
     
  6. NelliePledge

    NelliePledge plodder

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    pity nobody from UK NICE will be dialling in :(
     
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  7. Mary

    Mary Senior Member

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    Wow - I just read the exchange between Johanna Kaiser and Dr. Koroshetz. She was phenomenal, and he seemed rather clueless, he kept saying we need more answers, and she kept saying, so fund Ron Davis, etc. and he'd say, but we need more answers in order to allocate funding - arggghhhh!
     
  8. Barry53

    Barry53 Senior Member

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    Not just clueless, but wilfully noncommittal.
     
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  9. jimells

    jimells Senior Member

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    His plan to increase research is literally insane. No sane person would suggest that the solution is to have more researchers submit grants that will be automatically rejected in order for NIH maintain their 88% rejection rate.

    He could not be clearer that will be no change to the Policy of No Research. Our daily suffering is a result of deliberate indifference by government agencies, inflicted on some of the most disabled people in the country.

    We have clearly been denied the benefits of NIH medical research, and subjected to discrimination by government agencies and society at large, as a result of CDC and NIH actions. Those actions and refusals-to-act are violations of Section 504 of the Rehabilitation Act, which states in part:

    "No otherwise qualified individual with a disability in the United States ... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency..."

    Thirty years of phone calls, letters, lobbying, demonstrations, etc. have had little effect. It's well past time to take these agencies to court and force them to do their jobs.
     
    Mary, MeSci, MEMum and 5 others like this.
  10. Dolphin

    Dolphin Senior Member

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    You are entitled to your opinion but this is what most other illnesses have to do also.
    Only a percentage of all grants get funded.

    We do have a problem that there is not as many researchers putting in applications for our illness as many other illnesses. If we can raise money to support them, it should lead to more funding from the NIH.

    It is a different scenario to what has happened in the UK where, apart from in 2011, the Medical Research Council has turned down biomedical grant applications while funding quite a lot of research by psychologists and psychiatrists of the CBT and graded exercise school of thought.

    In the US, if doubled the number of grant applications go in, it should double the funding.

    In the last 7-10 years, some in the ME/CFS community have been donating and/or raising money for research, but I know in the years before that in the 30 years you refer to, a lot of people were not donating and/or trying to fund raise for research, yet often had money for very speculative therapies. I don't mind people trying therapies but I think people should try to give at least 1% of such spending on donations to research to move the field forward.
     
    Last edited: Jul 7, 2017
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  11. Gemini

    Gemini Senior Member

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    Bump, this starts in a few hours.
     
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  12. Anne

    Anne Senior Member

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    Why does one have to RSVP? If one doesn't, is one not allowed on the call?
     
  13. Rooney

    Rooney Senior Member

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    RSVP is a typical request for these calls across organizations. Don't know why - prob. counting interest.
     
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  14. Webdog

    Webdog Senior Member

    A quick way to double private research funding is to double the number of ME/CFS diagnosed. Simply getting from 1/8 ME/CFS diagnosed to 2/8 diagnosed should do it.

    Personally, I place the failure to diagnose squarely on the shoulders of the NIH and CDC.
     
  15. jimells

    jimells Senior Member

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    We don't need to RSVP to listen - only to talk. I'm waiting for the conference to start as I type this.
     
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  16. Londinium

    Londinium Senior Member

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    Some highlights so far for those unable to join:
    • Good shoutout to the InvestInME conference :)
    • NIH had good discussions with NIHR and MRC in UK about collaborative research (ruh-oh, hopefully this doesn't mean NIH will now start funding more BPS...)
    • Mark Davis at Stanford seems to have some new interesting findings, still to be confirmed prior to publication.
     
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  17. Never Give Up

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

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    Great speech by Sonia Heller. She strongly advocated for more funding, Walter Koroshetz, M.D agreed with her that the funding does not even come close to meeting the burden of disease and agreed that the current funding is peanuts!
     
    Mary, MEMum, Sean and 12 others like this.
  18. Nielk

    Nielk

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    Yes but he sounds really bored and is not willing to do anything about it.
     
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  19. Anne

    Anne Senior Member

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    I'm very worried about the NIH discussions with MRC and NIHR in the UK. If I'm not mistaken a meeting took place before the Invest in ME Research conference, coordinated by the UK CMRC (who thereby, in my opinion, judging this from the outside, seem to have done some "speaker stealing").

    As we know the CMRC is co-chaired by Crawley and has the goal of getting the very dubious MEGA study started. This will not be a proper ME/CFS study, but once again a study on broader "fatigue" (Crawley sometimes says "ME" but she always means "chronic fatigue").

    Now, if NIH had asked to meet MRC and NIHR in a pre-colloquium meeting facilitated by Invest in ME Research, I would have felt very hopeful!

    As it is, I instead feel very worried. Adding to my worry is the fact that Nath chose to not attend the excellent and purely biomedical Invest in ME Research colloquium, but will be attending the not-purely-biomedical CMRC conference in a couple of months.

    Those of you who are in touch with NIH and CDC, could you please convey to them that MEGA is not a good way forward? A much better solution would be to collaborate with the already existing London Biobank (Nacul and others), and with Invest in ME Research. And that all research done in collaboration with the UK needs to be biomedical and use CCC.
    @medfeb @jspotila @Emily Taylor @znahle
     
    Last edited: Jul 10, 2017
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  20. bspg

    bspg Plant Queen

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    Any more updates? I totally forgot this was today :(
     
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