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Why you should register for the NIH's ME/CFS P2P - Jennie Spotila

Discussion in 'Action Alerts and Advocacy' started by Sasha, Sep 8, 2014.

  1. Sasha

    Sasha Fine, thank you

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  2. xchocoholic

    xchocoholic Senior Member

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    Hi Sasha. Just out of curiousity, can you tell me where this mtg will take place and what kind of accomodations are available ? I read the info but didn't see where it's being held. Tx .. x
     
  3. *GG*

    *GG* Senior Member

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    @xchocoholic its an online thing, see link in her post.

    GG
     
  4. Sasha

    Sasha Fine, thank you

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    It's both a physical meeting and one that you can attend online. The NIH is in Bethesda, MD, a fact stupidly missing from the page about the meeting. I assume it's taking place there.

    I'm a Brit and have never been to one of these things so can't tell you about accommodations.

    @jspotila, are you able to answer these questions better than I can?
     
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  5. Denise

    Denise Senior Member

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    Hi,
    This link is for registration https://prevention.nih.gov/programs...ention/upcoming-workshops/me-cfs/registration
    This link tells you more about logistics:
    https://prevention.nih.gov/programs...revention/upcoming-workshops/me-cfs/logistics

    Some advocates are working on developing a list of accommodations. If there are particular ones that would make it easier (especially) for in-person attendance it would be good to compile a list of them here, and submit one list (rather than individual and duplicated requests).

    An obvious request is a nearby, quiet room for patients to rest.
     
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  6. Mary

    Mary Senior Member

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    Thanks for posting this - I just signed up for the video cast.
     
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  7. catly

    catly Senior Member

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    I signed up for the video cast. I might try to make it in person. I think I can take the train to Bethesda, it would be a long trip but I'm sort of afraid to fly, I haven't flown since I've gotten sick.
     
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  8. Denise

    Denise Senior Member

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    It would be good if you can attend in person.

    A high level of participation by the community would show NIH that no matter what the outcome of the report - we are interested and on their case (when needed).
    Conversely - a low level of participation would come across to them as an endorsement by the community that all NIH, etc are doing is acceptable and we have no problem with it. It would be a shame if that is the idea that they get.
     
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  9. catly

    catly Senior Member

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    From my perspective (new to MECFS world) I do think that not showing up or participating in some way just makes it easier for the government to convieniently construe that to mean we do not care or at minimum, don't oppose. It's just too bad that it's so hard for us to "show up" at these important advocacy/political type events. Most of us don't have advocates to attend for us let alone the financial impact for people who can't work and of course possible negative impact travel and attending a meeting can have on health.
     
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  10. Denise

    Denise Senior Member

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    From what I have seen, lack of participation is generally taken by the government agencies as the community not being concerned enough about the outcome to take part.
    They don't understand how difficult it is for us to put in an appearance, or watch a webcast.

    And certainly the panel of non-experts has no idea of the tremendous toll participation takes --- so we need to make them understand how difficult it is and what a physical and cognitive cost this sort of thing does to us.
    Yet these non-experts will be charged with writing a report on research recommendations for this illness and I strongly believe they need to get a real sense of the severity of this illness by seeing us.

    (The financial costs are also huge but likely more difficult to convey as meeting attendees.)
     
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  11. lnester7

    lnester7 Seven

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    You don't have to watch per say if you feel bad, just join and let it running while you rest :rofl:
     
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  12. jspotila

    jspotila Senior Member

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    You did perfectly fine! As did @Denise.

    This is a physical meeting on the NIH campus in Bethesda. It will also be webcast. The logistics page is definitely worth taking a look at, as it includes nearby hotel information, parking/security info, etc.

    I've been getting some questions on FB and my blog about public participation in the meeting, so I thought I would add that here:

    The only scheduled "patient perspective" is 20 minutes at the beginning of the first day. The speaker(s) for that slot will be chosen by NIH. My sources suggest the selection has not been made yet, but no one really seems to know. There were four names on the draft agenda from the beginning of 2014, and my name was on the list. Chances of them asking me to speak? Who knows!

    There is a great deal of open discussion time scheduled throughout both days of the meeting. We don't have confirmation for how this will work. I'll be watching the Opioid meeting at the end of the month to see what we can glean from that. But I expect the discussion sessions to be moderated, and I expect that it will not be a free for all. I expect that we may be able to submit questions, but our opportunities to get to the microphone and speak will be limited. The emphasis will be on the Panel members' interests and questions, and discussion with the presenters.

    This is not a public meeting like CFSAC or even the FDA meeting. There are no public comment slots. There is no opportunity for submitted written comments to the Panel. There is no information on whether people watching online can submit questions, although to be perfectly honest that would not be hard to do using Twitter.

    The main opportunity for public comment will be on the P2P Panel Report. The report will be issued about a day after the meeting and is usually open for public comment for 15 days. We've heard that the response time will be extended in our case, but we have no confirmation on how much extra time we will have.

    Hit me with any questions!
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Has anything productive come out of these meetings ? If so, what ? Is this info anywhere ? Hopefully this info is in an easy to understand and condensed version for people who aren't familiar with the terminology.

    How does this meeting compare to all the other govt advocacy meetings we hear about ?

    Is there a list of govt agencies involved in treating or defining me/cfs ? Honestly, I can't keep them straight.

    What role are patients expected to play at this meeting ?

    Tx .. x
     
  14. Sasha

    Sasha Fine, thank you

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    I think that's another one for @jspotila!
     
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  15. Nielk

    Nielk

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    Jennie has many articles on her blog regarding the details of the P2P.
    http://www.occupycfs.com/2014/09/08/why-you-should-p2p/

    Besides this current article, you can search her blog for more on P2P. It is a very complicated, confusing process, even got those who have been following this from the start.

    It is pretty much agreed on by all that the process as is could have dangerous consequences for us.

    What to do about itis the question.

    I agree that a large physical showing would be good if we get some chance to speak up. If we don't get that chance, it might be construed that there is an overwhelming acceptance of the process.

    I thought that a petition by patients stating our concerns might be a good idea but others don't seem to agree.

    In either case, once this first report comes out, a day after the workshop, we will have some time to send in comments. That will be a possible opportunity for us. I'm not sure how much effect it will have though.
     
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  16. Nielk

    Nielk

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    I just registered for the webcast but, in case you can't -
     
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  17. jspotila

    jspotila Senior Member

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    There has been one completed P2P meeting at NIH so far, a meeting on polycystic ovary syndrome in December 2012. You can read about the meeting here, including the Panel's final report.

    This is completely different from other recent government meetings. The closest one is the State of the Knowledge meeting at NIH in 2011, but that was a very different process.

    P2P is sponsored by NIH, and NIH also funds ME/CFS research. CDC and FDA are also involved in diagnosis and treatment issues. The Institute of Medicine contract funded by HHS will produce a clinical case definition.

    There is one speaker slot for one or more patients selected by NIH to speak. I've heard rumors that this person has been chosen, but rumors only. There is no speaker listed on the NIH page. We're just not sure how much additional participation we will get at the meeting itself. We may have a chance to ask questions, but there is no public comment time like we see at the CFS Advisory Committee meetings. There are several points at which we can submit written comments on reports, and I'll be keeping people informed about that on my blog.
     
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  18. Hate ME/CFS

    Hate ME/CFS

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    I think that participating in the NIH/P2P workshop is bad for two reasons. First, the members of the NIH/P2P know nothing about CFS. Second, the workshop will allow for anyone to speak in opposition. If we participate, the NIH will spin this to their advantage, and claim that we are supporting their redefinition of criteria.
     
  19. Hate ME/CFS

    Hate ME/CFS

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    One more thing to ponder about the P2P. This workshop isn't about discussing how to prevent CFS/ME, it's main focus is redefining what research will be used.
     
  20. caledonia

    caledonia

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    @jspotila has posted an update to the meeting specifications.
    http://www.occupycfs.com/2014/09/18/p2p-participation-part-2/

    There will be a little more opportunity for public comment. Could this leave the door open for public protest?

    If you do decide to boycott the meeting, you need to tell the HHS that you are boycotting, otherwise nobody will know.
    There is a sort of boycott letter going around, generated by the "other forum". Not really a letter, just a few speaking points and a couple of addresses.

    I think this is similar to what we did originally for the P2P - telling Francis Collins to stop the P2P with a One Click letter campaign.

    Another option is to do a boycott with a Twitter Thunderclap like we did for the May Open IOM Meeting.

    A physical demonstration either outside or inside the meeting is another possibility (but obviously more difficult to pull off).
     
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