Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

[shannah]

Good news from the NIH

by P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. on Thursday, December 30, 2010 at 12:43pm.We are pleased to announce that Dr. Dennis Mangan, with the National Institutes of Health, has asked patient organizations for nominees of patients to sit on the Steering Committee for the NIH State of Knowledge Workshop on ME/CFS, scheduled for April 7-8. Among the nominees, the NIH will be choosing at least two to serve.

PANDORA was one of the organizations approached. We then invited input from many trusted long-time advocates and other patient organizations. After confirming who was able to serve, PANDORA plans to submit the following individuals as qualified candidates:

Mary Schweitzer

Pat Fero

Cort Johnson

Rebecca Artman

Brian Smith

Lee Meisel

David Adonailo

Marly Silverman

Brian Smith

Bob Miller

Alan Gurwitt

As far as we know, this is the first time the NIH has invited patients to sit on this research steering committee. We are beginning to see the changes we have been urging for decades.

We recommend all patients join us in commending Mangan for taking this first step. By inviting patients to the decision-making table, the NIH is now showing transparency and a willingness to be responsive to patient concerns.

We look forward to more opportunities for patient influence.

Now is the time to unite.

 

[shannah]

Ya-a-a-y Cort!!!

 

[IntuneJune]

Great honor

Well deserved.

June

 

[frenchtulip]

PANDORA has selected some excellent nominees!

Do we know what other organizations were asked to submit nominations?

 

[Jody]

Fantastic.

Just makes me want to laugh.

 

[Cort]

Patient Advocates for the NIH SoK Steering Committee for the State of Knowledge Con.

Dennis Mangan - the leader of the NIH CFS Working has decided to include from 1-2 patient advocates in the steering committee that is putting together the State of the Knowledge Workshop for CFS in April of next year.

He is looking for people from the US knowledgeable in the research, who can be assertive, who can report back to the CFS committee and who are healthy enough to handle what may be a pretty good workload.

From what I can tell he contacted many or most of the ME/CFS non-profits including Phoenix Rising and lists (rather long) are being generated. I assume that he did not put out a general request to the community because he didn't want to be inundated with emails.

The Board of Phoenix Rising (myself, Adin Burroughs, Mark Berry, Pat Sonnett and Christina Gombar) will come up with our selections and, of course, we welcome input. I will be one of our nominees .

This is the first time to my knowledge that something like this has happened - it's another example of Dennis's willingness to engage the community and be transparent about what is going on.

Please do not email Dennis. Based on the lists that I have seen he will get a variety of nominations. We want this process to work and to be repeated and him getting swamped with emails would probably not help achieve that.

I will send him a link to this thread so he can check out the communities opinions.

 

[August59]

Are any of these people listed, besides Cort, members of PR. I recognize Cort because that is his user name. However, most people go by another alias and I wouldn't know them by their real name? Thanks

 

[Otis]

Shannah,

This is great. Do you know what other orgs were contacted?

Thanks,
Otis

 

[shannah]

XMRV Global Action on FB is apparently collecting names to submit. You can nominate at the link below. I don't know at this point if there is another site you could post to for those who aren't on FB. Below the announcement, I've posted some of the names being nominated. (I've tried to remove most of the chatter).


http://www.facebook.com/notes/xmrv-...-of-knowledge-steering-committee/492264131796

Nominate patients to sit on NIH State of Knowledge Steering Committee
by XMRV Global Action on Thursday, December 30, 2010 at 1:24pm.

According to P.A.N.D.O.R.A. Dr. Dennis Mangan, with the National Institutes of Health, has asked patient organizations for nominees of patients to sit on the Steering Committee for the NIH State of Knowledge Workshop on ME/CFS, scheduled for April 7-8. Among the nominees, the NIH will be choosing at least two to serve. It has been suggested, on XMRV Global Action, that we have one or two representatives from each advocacy organization.



Those chosen for this steering committee will represent all of us, therefore, it is important that we all have an opportunity to voice our opinion in who would best serve our community. Please nominate the person you feel will best fill this position and post it here. We will forward this to the appropriate individuals. Remember, this person must be willing to fill this position!


Jill Mc Laughlin, Heidi Dunlap Bauer , Dr. Deckoff Jones , Annette Whittemore for me I cant travel , . Jill Justiss , Jennifer Marcus Hackinson. Autism and GWI really need to be represented
I recommend the same all those, also Kent Heckenlively. !!!
Mary Schweitzer is a good one (KD)
Kent Heckenlively and Jennifer Marcus Hankinson for autism
Annette Whittemore, Dr. Deckoff Jones, Heidi Dunlap Bauer for ME/CFS
Yes, I think mary Schweitzer is an excellent choice.
Jennifer I'm sorry Hankinson
Rivka and MeZombie
Jill I think you would make an excellent rep
I would also like to add Kathy Robertson of Neuroimmune-XMRV-Alliance
We need Patient Advocate (Chris Cairns) on this committee... (KD)
Ditto for the patient advocate. Can someone contact him to see if he is willing?
Pat Fero, Jill McLaughlin, Chris Cairns

 

[shannah]

Oops - 2 threads on this now Cort. See also

http://forums.aboutmecfs.org/showthread.php?9317-Good-News-From-The-NIH&p=147252#post147252

 

[Glynis Steele]

Very best of luck, Cort, can't think of anyone better!

Glynis

 

[Dolphin]

Autism and GWI really need to be represented

How many nominations are there? On another thread, I read there will be 1-2 patient advocates.
An autism specialist probably won't be suitable as they (i) won't know enough about ME/CFS (ii) may look at things from the perspective of autism.

I don't live in the US so am not looking to get involved myself.
But it should be remembered that there is a lot to ME/CFS research. And a lot can go wrong. One thing I don't want to see is GET and CBT based on GET pushed. They're the two treatments that tend to come up in evidence-based reviews. So ideally I think we would need people who know about this area and are also annoyed enough by it that they will challenge others.

 

[Wayne]

the National Institutes of Health, has asked patient organizations for "nominees of patients".

Does this mean nominees have to be patients? If not, I would think Rich Van Konynenburg would be an excellent potential nominee.

Thanks much for posting this Shannah. This is a most welcome development!

Wayne

 

[Cort]

Fantastic.

Just makes me want to laugh.

Pray tell - at one of the nominees???

 

[Cort]

Shannah,

This is great. Do you know what other orgs were contacted?

Thanks,
Otis

I know Pandora, Wisconsin, PR, ....were. I imagine others in the US were - Rocky Mtn, VErmont, Mass, NJ, CAA....?

 

[Cort]

How many nominations are there? On another thread, I read there will be 1-2 patient advocates.
An autism specialist probably won't be suitable as they (i) won't know enough about ME/CFS (ii) may look at things from the perspective of autism.

I don't live in the US so am not looking to get involved myself.
But it should be remembered that there is a lot to ME/CFS research. And a lot can go wrong. One thing I don't want to see is GET and CBT based on GET pushed. They're the two treatments that tend to come up in evidence-based reviews. So ideally I think we would need people who know about this area and are also annoyed enough by it that they will challenge others.

That is a real problem with evidence-based review of treatment. I hope it won't be a real problem regarding research...there's too much stimulating research out there but I do think the advocate will have to argue aggressively for new but potentially game changing areas of research like Dr. Lights study that have not been very well documented - just two papers thus far; the repeat exercise studies and metabolic abnormalities - just a couple of papers, Dr. Montoya's new work that is just coming out.....Dr Maes work which is prolific but is sometimes published in small journals that are hard to get, Dr. Baraniuk's proteome work...Dr Mella's Rituximab study and its implications..... Dr. Lerner's work....

This thread should also emphasize creative aspects of CFS research that should be highlighted.

 

[urbantravels]

This is an ME/CFS conference, not an XMRV conference. I do not see the need for advocates for autism and other conditions to be represented. This conference is for our disease, not just for one hypothetical possible pathogen that may or may not be associated with it and/or other conditions. There will need to be a lot more matters discussed than simply the current state of XMRV/MLV research.

 

[Cort]

Oops - 2 threads on this now Cort. See also

http://forums.aboutmecfs.org/showthread.php?9317-Good-News-From-The-NIH&p=147252#post147252

Got trumped again, Shannah - Thanks!

 

[Cort]

This is an ME/CFS conference, not an XMRV conference. I do not see the need for advocates for autism and other conditions to be represented. This conference is for our disease, not just for one hypothetical possible pathogen that may or may not be associated with it and/or other conditions. There will need to be a lot more matters discussed than simply the current state of XMRV/MLV research.

I'm sure there will be. The XMRV section will, no doubt, be fascinating but it's particularly important to build interest in other (and, of course, possibly related) aspects of this disorder when ME/CFS is in the news. The Workshop should be the basis for an RFA grant; that is - the fed govt should provide a grant package to study aspects of CFS (and only those aspects of CFS) that the Workshop indicates are important. Its important that all aspects of CFS get highlighted.

 

[richvank]

Does this mean nominees have to be patients? If not, I would think Rich Van Konynenburg would be an excellent potential nominee.

Thanks much for posting this Shannah. This is a most welcome development!

Wayne

Thanks, Wayne! I contacted Dr. Mangan a while back and suggested that discussion of the GD-MCB hypothesis be included in the Workshop. He replied that time would be tight, but he was sending my suggestion on to the steering committee, and it might be a possibility. Methylation treatments have shown good results in clinical testing, and they are running pretty high on the treatment rankings at CureTogether.com, so I think it would be worthwhile to include this hypothesis, even though there are no peer-reviewed journal papers on it yet. So, we'll see!

Thanks again for the vote of confidence!

Rich