Why You Should P2P


My concerns about the NIH’s Pathways to Prevention Workshop on ME/CFS are legion, and I’ve been quite vocal about them. But today I am asking you to participate in the P2P Workshop on December 9-10, 2014.

Registration for attending in person or by webcast is now open, and my hope is that everyone who reads this blog will sign up for one or the other.

Why would I ask you to participate in a Workshop that I have been trying to stop or delay or change? It’s simple: the P2P Panel needs to see us, hear us, and know that we are watching what they do.

I can guarantee you that the P2P Panel will not understand what this disease does. They won’t know that some of us need wheelchairs. They won’t know what a crash looks like. They will have no idea that we are held prisoner by our bodies, unable to cook, read, speak, stand in line, drive, function, live any kind of normal life. They won’t understand that scheduling this meeting right before the holidays imposes an extra and tremendous obstacle to our ability to participate.

How can I be sure that the Panel will not understand these things? Because one of the criteria for their selection is that they have no professional or personal experience of this disease. Because the evidence review is unlikely to convey the seriousness of the disease. Because the P2P Panel’s website does not even mention post-exertional malaise, let alone paint an accurate picture of this disease.

The P2P Panel needs to look around the room at the Workshop and see us. They need to see us guzzling water and electrolytes, sitting with our feet propped up on chairs. They need to see our walkers and canes and wheelchairs. They need to see our family and friends. They need to see us lying on the floor when we become too ill to sit.

The auditorium holds 1,000 people, but in the application for meeting approval (that I obtained through FOIA) NIH estimated that only 100 members of the public will attend. I don’t know if they think we aren’t interested or that we won’t bother to be present at this vital and important meeting. Prove. Them. Wrong. I cannot guarantee that you will have a chance to comment or ask a question. But I promise you that your physical presence in the room will have an impact. I promise you that making this the most watched P2P meeting will have an impact. How can it not? How can we – the people most affected by this disease and most impacted by this non-expert Panel’s recommendations – how can we possibly fail to send a message if we come together and SHOW UP.

Do not acquiesce to being made more invisible than we already are. So please, register for the meeting in-person or by webcast.


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35 Responses to Why You Should P2P

  1. Diane says:

    Did it last week!

  2. Patient says:

    They dont give the public a chance to speak. If they do- 3-5 minutes- they do not listen. The same people who will be there have been at the other meetings in the past and have seen patients in wheelchairs, guzzling drinks- they do not care.

    The last patient I remember who actually got down on the floor at a meeting was Tom Hennessy who unfortunately is not longer with us.

    They only listen to the Advocacy Organizations who do not represent the patients.

    So why should we make a trip there when they will use the attendance numbers to say we approve of the study when we do not.

    • Jennie Spotila says:

      Actually, there will be different people in the room. The P2P Panel will be comprised of people who have never worked on ME/CFS before. They are going to know nothing (or perhaps even have dangerous misconceptions). They will not realize that some of us are so ill that we need wheelchairs or are bedridden. They won’t know because NIH will not have told them.

      That’s why I think we need patients in the room, interacting with the Panel and the policy people. As we saw at the FDA meeting in 2013, it wasn’t until people could see and hear about our experiences that they really started to get it.

  3. Andrew Bokelman says:

    Can people testify via the webcast.

    • Jennie Spotila says:

      Andrew, I do not know. There is no indication so far that people will be able to comment much at all, beyond the invited speakers and panelists. From the draft agenda, there does not appear to be any public comment time such as we’re used to with CFSAC, etc. It is possible that people in the room will be able to ask questions and/or discuss, but it’s unclear whether that will be restricted to scientists. And there’s no information on whether people watching the webcast will be able to ask questions.

      The technology is there. For example, they could take Twitter questions. But are they willing to? We just do not know.

  4. Mary says:

    Thanks for posting this! Just signed up for the video cast

  5. cathy l says:

    I signed up for the webcast. I might try to attend in person, I think I can take the train to bethesda as I’m sort of afraid to fly, I haven’t flown anywhere since getting sick.

    • Jennie Spotila says:

      Great, Cathy! I know what you mean about air travel. I would rather ride in a car for 12 hours than fly.

  6. Ess says:

    Totally agree–they only listen to the Advocacy Organizations who do NOT represent patients.

    Exactly–a showing will be deemed to say there was a patient representation there–and any other way they want to spin it!!

  7. Michelle says:

    I’ve registered but given that I’m on the West Coast, don’t normally even wake up until noon-ish PST, and the meeting on the 9th wraps up at 3:45 EST, I’m not sure how much of it I’ll be conscious enough to see live. 😉 This is probably the first webcast I’ve ever registered for, for that very reason (though I did get to see much of the IOM meetings live). I’m firmly on the side of engaging with these people as much as possible because they would love nothing more than to keep their activities amongst bureaucrats. They couldn’t care less if we boycott (and probably prefer it); we don’t have the luxury of not forcing them to see us — virtually or otherwise — as well as what they are doing to us. Hopefully, it will be one of those mornings I wake up at 6-7am and can’t get back to sleep. If nothing else, I’ll turn it on and doze as needed. 😉

    It’d be great to have a room full of ME/CFS patients on gurneys (IVs attached?) wearing sun-glasses and ear plugs to show as visibly as possible what ME/CFS is like. I know that’s unlikely as the costs — physically and financially — would be prodigious. But I do hope as many as are able to go will pack that room and make them looks us in the eye when they talk about us.

  8. Waiting says:

    Done! Registered for webcast.

    Great post, Jennie.

  9. Ren says:

    To my understanding, an archived recording of the workshop will be free online worldwide within a week of the workshop’s end.

    This is important of course because so many are not well enough to be there in person, and so many are not well enough to watch/listen to the workshop in real time.

    How do we communicate that to P2P? Too limited to even watch in real time – that it’ll have to be done in short segments over time. And there are still others of course who won’t be able to manage even that.

    I’m concerned that if I sign up for the video that I’ll be by default communicating that I am well enough to follow the workshop live. :/

    Will CFSAC archive comments about P2P? So that if P2P denies the right to speak and if NIH ignores all our concerns – that there will at least be a public record somewhere?

    • Jennie Spotila says:

      When you register (in person or video), you should see a field asking about accommodations. I know of at least one person who asked for some video-related accommodations, so I suggest doing that.

      Not sure what you mean about CFSAC archiving comments about P2P. The comments made to CFSAC for their meetings are archived and public record. Concerns expressed to P2P or NIH will not be (under their current process).

  10. Michelle says:

    @Ren: I plan on having it going on my laptop but only actively watching it when I’m awake and able (which, given my above-mentioned situation, will not be a lot). The rest of the time it will be on mute and/or the screen will be minimized. I figure that way I’m counted as “there” whether or not I actually am since being counted is what matters. I appreciate that will be deceptive per your concern about it demonstrating an ability to watch 6-7hrs worth of meetings. But the very fact that most of us will have to watch this online from our beds instead of showing up already demonstrates a pretty severely impaired functional capacity — like, beyond cancer patient impaired. Moreover, they have no way of knowing who’s watching, if we’re patients or caregivers or friends/family, or joe schmoe off the street (though they do, apparently, care if you’re a journo or health care worker). The important thing, imho, is to impress upon them that a LOT of people care about and are watching what they are doing.

    • Jennie Spotila says:

      I have done the same thing in the past – let a meeting run on my computer even if I needed to sleep, just so they would have to count me. And you make a good point that watching it from home because we are too sick to attend is a very high level of impairment!

  11. Jane L. says:

    Registered for the webcast. Thanks for your updates!

    I agree number of registrations count to show that people are paying attention, no matter what the registrant’s reasons are: even if we’re only able to tune in for some of it, it’s better than giving them the impression no one is paying attention to/watching over what they’re doing.

  12. Deborah Waroff says:

    P2P for the disease formerly known as M.E. is specifically designed to destroy all progress our researchers have made in characterizing the real physical symptoms of the disease. This is not a contention. This is a fact. The overturning of “cfs” and Fukuda would hugely embarrass certain hugely important high ranking figures at NIH. Remember, the correspondence between Straus and Fukuda proves the vague-ing out of M.E. was deliberate high NIH policy.
    THE ONLY REASON TO ATTEND IS TO SHOW HOW SICK YOU ARE WITH GURNEY, IV, WHEELCHAIR,HEALTH AIDE, ETC. Unless you are a piece of evidence you are there only to be abused and mis-used.

  13. Cheryl says:

    Registration won’t accept my email as valid. Don’t know why.
    I’ver retyped it 5 times or more. And yes I have gone over it to make sure my cog. is not tripping me up.
    I’ve actually had that at other sites, but usually if I type it a couple times they end of taking it.
    Any clues why they would think it’s not valid ? Is same I put on your form. I get my mail !

  14. calaly says:

    Just signed up. I wish I could be there because I sure would be spending most of the time on the floor after flying across country – why I’m going to be watching from bed or recliner instead. I have gotten over my reluctance to spread out on the floor when needed during the past several years. Airports -check, doctors offices – check! Almost had to in a restaurant recently, but they brought the food and we threw it in to go containers and fled home. One of the times when the desire to spend time with extended family overwhelmed my common sense in pacing.

    • Jennie Spotila says:

      Yes, my desires/ambitions definitely overwhelm my common sense in pacing too! Thanks for signing up to watch the meeting.

  15. Alan K says:

    I think that participating in the NIH/P2P is a bad idea for two reasons. First, the members of NIH/PP workshop know nothing about CFS. Second, the workshop will not allow for anyone to speak in opposition. The NIH will use the number of people participating, and spin that to their advantage to pretend that CFS/ME patients are on board with this.

    • Jennie Spotila says:

      My fear is that our absence will also be used against us. Our absence tells NIH/HHS that the more outrageous a process they follow, the less likely we are to show up and give them a hard time. One source told me that an NIH employee commented many months ago that the patient community supports the P2P meeting because no one had complained about it at that point.

  16. Emma says:

    Thank you for your advocacy, Jennie!

  17. Joan says:

    Have registered for webcast from Ireland

  18. Ess says:

    @Deborah Waroff

    P2P for the disease formerly known as M.E. is specifically designed to destroy all progress our researchers have made in characterizing the real physical symptoms of the disease. This is not a contention. This is a fact. The overturning of “cfs” and Fukuda would hugely embarrass certain hugely important high ranking figures at NIH. Remember, the correspondence between Straus and Fukuda proves the vague-ing out of M.E. was deliberate high NIH policy.

    Thank you ever so much for saying this ever so clearly, Deborah! You are right on the button!!

    @Alan K
    Totally agree with your comments above!!

  19. cathy l says:

    FWIW, I just checked out the P2P information on the opioid’s workshop taking place on the 29th and 30th of september. There’s a link that says “get involved” where they are trying to elicit participantion in the workshop from “professional, advocacy and voluntary organizations”. It says participants in person will have the opportunity to make comments throughout the proceedings and both in person and registered videocast attendees can provide comments on the draft document. There’s even a invite to join the conversation on twitter using#P2PChronicPain.

    I was just wondering if anyone noticed if that has been there all along or if it was something new, and could that opporunity become avialable to the ME workshop attendees as well??

  20. Pingback: The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process

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