I have new information on participation in the Pathways to Prevention ME/CFS Workshop:
The Office of Disease Prevention confirmed via telephone that the public will be able to participate in discussion at the P2P Workshop, in person and online. ODP explicitly said that people attending in person can ask questions or make comments via microphones or computers in the room. Webcast viewers can type in comments and questions in a comment box on the webpage. There is a total of 3.5 hours of “Discussion” time noted on the draft agenda, and this is when public input will be addressed. The ME/CFS meeting will follow a procedure very similar to the upcoming P2P meeting on opioid use, so we will be able to see how it works. While there is no guarantee of how much we will be included in the discussion, I am very glad that we finally got some clarity on this issue.
Dr. Susan Maier (NIH) confirmed via email that the comment period on the P2P final report will be extended. Originally, we were going to have from December 12 to December 26th to submit comment on this vital report on the direction of ME/CFS research. This is the worst possible timing for a population as disabled as ME/CFS patients, falling right at the holidays. Multiple groups and individuals requested an extension of this time as an accommodation of our disability. Dr. Maier has confirmed that the comment deadline will be extended to 30 days, meaning the new deadline should be around January 12, 2015. This is a fair and reasonable period of time, and I thank NIH for making this accommodation.
So here is where I repeat my plea for as many people as possible to attend the meeting on December 9-10th, watch it via webcast, and comment on the draft report. Register for the meeting here.
I know that some advocates believe that watching the meeting or submitting comments is some kind of endorsement of the process, and that this participation will be used against us. I strongly disagree. Silence will be interpreted as consent. This is especially true given that we now have better opportunities to participate (although it remains to be seen how many of our questions are actually addressed, of course). We have been complaining for years that NIH needs to do more about ME/CFS, and now they believe they are taking a big step to do more.
I am on record as saying that I believe the P2P Workshop is fundamentally flawed in its present form. But I will attend this meeting, I will ask questions, and I will submit comment. I am not doing so because I think I can fix the fundamental flaw by myself. I am doing so – I am doing all the P2P work I have done – because at the very least, I will make sure that this process is conducted in the light. I will make sure that people know what is being done, how and by whom.
P2P is offering us a tiny itty bitty piece of a microphone. I say hold on, and speak up.
Silence is acquiescence. I agree that we must speak up, write, and/or type over and over about everything we would like to be included (and what we don’t) in the final report.
Let’s bring some energy (LOL) to help steer the P2P process in the direction that is best for us.
I am stunned and appreciative that we will have this opportunity.
Thanks Jennie for your investigative work on this.
I think this does sort of open the door for the ME/CFS community now–if we stay silent, it will be taken to mean we agree with with the process and conclusions. If we participate, and voice our concerns, even if they don’t listen to us, at least we have something on record to fall back on if this turns out like we expect it will.
There is much pre-SET behind the scenes that is NOT transparent.
The players have RIGGED this game!
Even assuming that is true, we can only determine how to respond. I don’t see how NIH would care about or notice our silence, even if every advocate boycotted this meeting in protest. Now if all the SCIENTISTS boycotted, we would be getting somewhere. But that is a very unlikely strategy. And that brings us back to the question: how, as advocates, should we respond?
Registered; Thank you, Jennie.
@Jennie Spotila The wording of your question sounds like how a mediator would ask the question.
It does not matter whether advocates respond.
Whether we are there or not, they do not listen.
This was bought and paid for, the outcome is already determined.
The researcher that is on both panels signed a contract with CDC and HHS for $125K. That researcher did a CBT study and an exercise video on the market right after the IOM started.
The scientists aren’t boycotting because they were paid!
If they want advocates there, they have to finance the advocates way there, lodging and way home.
@Ren
Thank you, Ren!
@Patient
You are absolutely correct that scientists (especially those with NIH funding) have financial/professional/political reasons that they are not boycotting. You are also absolutely right that advocates carry a HEAVY burden to pay for travel financially and medically, especially just two weeks before the holidays. The dates of the meeting betray the insensitivity and ignorance we face.
But again, how do we respond? We can sit at home, silent, while this meeting carries on and they do what they want to do. Or we can watch/attend, speak up, and create just a little bit of transparency and accountability. We can show them that we see exactly what they are doing. We can make it a little more awkward/difficult for them to steamroll over us.
Anyone who believes that advocacy is pointless because the outcome is predetermined is likely to avoid the whole thing. Probably avoid this blog too. If I believed that, I wouldn’t be here. I would spend my very limited capacity on things that make me happy.
I do what I do because I believe that the federal response to ME/CFS is WRONG. I cannot look at the situation and turn away. I personally can not do that. I can’t reconcile my conscience to doing that.
Maybe the powers that be won’t listen or will do what they plan anyway, but that doesn’t mean we should be silent in this, our very lives.
I’d suggest that we ALL speak adamantly, strongly, pointedly, stressing the impact on our lives of this disease and what we want done about it — the definition, funds for research and treatments.
Be as pointed as one wants to be and emphatic.
Jeanette pushed through a lawsuit to get documents on the IOM contract with HHS under the FOI Act, and she won a judgment to do so against the NIH/HHS. She fought hard, and she gained a victory for us. She was unflinching.
We all have to follow her example, I think, and be out in force. We can’t have big demonstrations and sit-ins because of our health, but we have our voices and our ideas and our experiences. We know what should be done, and we can demand it.
Is there any deadline for registering for this meeting? I couldn’t see anything on the registration page.
I don’t think there is a deadline. Registration is still open for the P2P meeting on opioids, and that meeting is a week from tomorrow.
Jennie,
There is only one patient they are going to listen to and that is Bob Miller.
Why should advocates and patients go, pay for a trip they cannot afford, just to be given 3 minutes to talk and cut off in a demeaning why as the way Nancy Lee did at one of the last meetings.
This outcome is already paid for. They are not going to listen!
ADA accomodations would give more time because of the nature of this disability than Susan Meier is giving as far as that extension is concerned just to make a note of it especially since it is in December.
That extension date needs to be extended into January! Since you communicate with these people, it may be a good idea to send them that message, maybe advocates and patients would more participate.
The comment time on the P2P report HAS been extended to 30 days, which puts the deadline somewhere around January 9th 2015.
In terms of NIH only listening to Bob Miller, I don’t think that this is the case. I do understand that physical and financial limitations will keep many patients from attending in person. Please consider signing up for the videocast and submitting questions and comments through that system!
@Jennie Spotila
I don’t believe advocacy is pointless. It needs to be done. However, I believe that research efforts should focus on funding from outside of the Federal government. Time and time again they prove they are either incapable or willfully sabotaging efforts to move forward. Pushing for more funding to be filtered through the CDC and NIH is not only wasteful but HARMFUL.