NIH P2P Meeting (formerly the Evidence-based Methodology Workshop)

[Izola]

I myself am a highly-qualified non-expert with little-to-no knowledge in an infinite number of fields. Perhaps I too can work for NIH.

--------------

Thank you, Jennie, for your work in collecting and sharing this information.

Ren: I almost didn't recognize you, what with all those whiskers. You're the man for the job, 007. Iz

 

[Wally]

My, my, my seems like things are just humming right along in Washington.

Thirty years and now so much busy, busy work. I wonder where all of this activity is being generated from?

Alas I can only ponder such things in my dreams because the crystal ball contract has gone into hiding and appears to not be amenable to making an appearance until Hell freezes over or pigs grow wings and fly.

I called on Monday morning (Jan. 7th) to find out how I can stand in line to win a golden ticket for the opening Act of the IOM's theatrical production of its ME/CFS Contract with the HHS. The answer they say should be revealed by the end of the week. How many tickets will be sold to the public for this performance I asked? They are not sure yet due to logistical planning, which is still in the works for this performance.

Wearily I sighed - does the HHS and the IOM understand that there are members of the public who do want to attend the public session of this performance and it is less than 3 weeks away from this curtain call. In addition, some of these members of the public are ill and disabled and they will be required to travel great distances to witness this performance up close and personal? Yes, the response rang out loud and clear. Come back at the end of the week when we should have the information that you are seeking.

While Wally now sits at home confused and bewildered by these new developments, I leave you with some bits of entertainment to keep you occupied while waiting to hear when you may stand in line for the chance to receive a golden ticket. This sure seems to be to shaping up to be a great circus performance to start the New Year by those illustrious performers sequestered somewhere in the ivory towers of the HHS.

With warmest regards,

Wally (Your friend from California who has only just begun to engage in our little battle)

and for all those who wonder if we are making any impact in Washington as we have begun to use our outside voices - I believe that some of the activity we may "suddenly" be seeing could be because of the concern that things are no longer the status quo for advocacy for this illness. Too bad for some that it now appears that many sleeping dogs from around the world have been awaken (even if they can't get out of their beds).

Go Canaries! The Fight Has Just Begun!

 

[Izola]

Ren: I almost didn't recognize you, what with all those whiskers. You're the man for the job, 007. Iz

Ren: You are amazingly brilliant. You could use a little shave and a haircut--10 cents.

 

[Izola]

My, my, my seems like things are just humming right along in Washington.

Thirty years and now so much busy, busy work. I wonder where all of this activity is being generated from?

Alas I can only ponder such things in my dreams because the crystal ball contract has gone into hiding and appears to not be amenable to making an appearance until Hell freezes over or pigs grow wings and fly.

I called on Monday morning (Jan. 7th) to find out how I can stand in line to win a golden ticket for the opening Act of the IOM's theatrical production of its ME/CFS Contract with the HHS. The answer they say should be revealed by the end of the week. How many tickets will be sold to the public for this performance I asked? They are not sure yet due to logistical planning, which is still in the works for this performance.

Wearily I sighed - does the HHS and the IOM understand that there are members of the public who do want to attend the public session of this performance and it is less than 3 weeks away from this curtain call. In addition, some of these members of the public are ill and disabled and they will be required to travel great distances to witness this performance up close and personal? Yes, the response rang out loud and clear. Come back at the end of the week when we should have the information that you are seeking.

You seem so, uh, just seem so "just let out of prison" Happy In spite of exhaustion. You must be exhausted! You are doing so much for us, thank you, thank you thank you . . . . You just made Civil Rights History. In spite of all the barriers. And you moved that massive old white concrete Establishment. Didn't I here you say you heard the Ear, no no no, Congress and DHHS slip and rattle a wee bit? thank you thank you thank you THANK YOU, WALLY!!! Rest. p e a c e f u l l y IZOLA

While Wally now sits at home confused and bewildered by these new developments, I leave you with some bits of entertainment to keep you occupied while waiting to hear when you may stand in line for the chance to receive a golden ticket. This sure seems to be to shaping up to be a great circus performance to start the New Year by those illustrious performers sequestered somewhere in the ivory towers of the HHS.

With warmest regards,

Wally (Your friend from California who has only just begun to engage in our little battle)

and for all those you wonder if we are making any impact in Washington as we have begun to use our outside voices - I believe that some of the activity we may "suddenly" be seeing could be because of the concern that things are no longer the status quo for advocacy for this illness. Too bad for some that it now appears that many sleeping dogs from around the world have been awaken (even if they can't get out of their beds).

Go Canaries! The Fight Has Just Begun!

 

[Izola]

Help Nielk: I'm stuck in pink and can't get out' Pls see before Pigs Fly. Iz:thumbdown:

 

[Ember]

Robert Miller about an hour ago

A brief update for everyone: last week I was invited as a patient representative to the NIH Working Group meeting for the NIH Pathways to Prevention Workshop on #MECFS (happening in the future). This is what was described as an Evidence-based Methodology Workshop at last Spring's CFSAC meeting. I was asked at the last minute because the original patient advocate could not attend. The Working Group was charged with preparing questions for a thorough evidence-based literature review to identify gaps in ME/CFS scientific research, and we recommended expert speakers and independent panel members for the workshop itself....

Posted by Wildaisy...

 

[alex3619]

Go Canaries! The Fight Has Just Begun

These canaries are morphing into little dragons. How long before those little dragons grow up and start breathing fire?

 

[Nielk]

More on P2P - by Jennie Spotila

http://www.occupycfs.com/2014/01/13/more-on-p2p/

As I said before, there are two fundamental problems with the P2P process:

1. The P2P panel cannot – by design – include anyone who has ever published on ME/CFS or taken any position on it. The Workshop could be exactly as Bob and the other Working Group members designed, but non-experts will do the evidence review and non-experts will comprise the entire Panel. That Panel will write the final recommendations, not the Working Group or meeting presenters.
2. There is no transparency. I am very glad Bob came forward to acknowledge his participation in the Working Group. But the questions they finalized at the meeting have not been made public. The roster of the Working Group has not been made public (although word is leaking out). My understanding from two people who attended the meeting was that the discussions at the meeting were confidential. While Bob and the Working Group nominated potential panelists, the actual selection process will be done in secrecy. We will have no input, and no idea who those panelists are until the meeting is about to happen.

 

[justinreilly]

I don't know enough about Bob to make a judgment on him overall. I do know he has done some great things for us. However, this post of his makes me extremely uneasy. If I didn't know, I would guess that Cort wrote it. It exhibits the dangerously delusional trust in HHS that will mislead those who don't know enough. Trademark Cort. Not a good sign.

The fact that he doesn't mention that the Panel (as opposed to the workshop committee), which will write the final report, must consist entirely of non-experts is a very troubling omission. The process is fatally flawed.

 

[Ember]

Go Canaries! The Fight Has Just Begun!

Ready or not, here we come...



or are we pacifist canaries?

 

[Ren]

"The government itself, which is only the mode which the people have chosen to execute their will, is equally liable to be abused and perverted before the people can act through it." (Thoreau - Civil Disobedience)

 

[Ember]

Wildaisy has received from the NIH a snail-mail response to her FOIA request, and she has posted the documents on MECFS Forums (Reply #9). Dr. Koh's July 3 memo to the NIH Director includes this reference to the intended coordination with the IOM:

I understand that the NIH has begun and Evidence-based Methodology process, which will include the issue of case definitions appropriate to ME/CFS research activities. The proposed IOM study would work in coordination with the Evidence-based Methodology process to provide a comprehensive HHS-wide response to ME/CFS. Many components of the Evidence-based Methodology could be beneficial to the IOM, including the questions that will inform the evidence review and the literature review. My staff has already spoken with the IOM about NIH's efforts and they are interested in building upon these activities.

During the planning period, my staff with engage each participating agency in efforts to:

• collaborate on the development of the Statement of Work;
  
  
• solicit recommendations for IOM committee members;
  
  
• provide regular updates and communication; and
  
  
• assist the IOM in the development of a dissemination strategy for the broader medical community.

Wildaisy will post the documents to the MECFSForums Wiki.