Next CFSAC meeting June 16-17, 2014

[Nielk]

Elaine Perry updating on CMS.

ICD-10 implementation date has been moved to Oct. 1, 2015.

 

[Sasha]

It is true that this is what they say is their reasoning.
The point is though that many now who see the dangers of this P2P, want it stopped. By putting this into the rec. it gives it legitimacy.

That's a fair point. I can see both sides of this one.

 

[Nielk]

CMS has huge population data.

Study found raised risked of non-hodgkins disease for ME/CFS patients.

 

[Nielk]

Andrew was just speaking and got cut off? They didn't give a one minute warning and just cut him off. He was doing great!

i hope @Andrew that you can post your testimony here for us.

 

[NK17]

Once again many thanks to Nielk for reporting.
I just got up (West Coast) and heard Andrew's speech and the committee apologies for not giving him the 1 minute warning!!!!
These people are just bureaucrats ...
Thank you Andrew, you are one of our braves.

 

[GalaxiiGrl]

It boggles my mind that the presenters who are reading directly off of slides about irrelevant topics are given as much time as they want, but when someone has something substantive to contribute, he or she is abruptly cut off mid-sentence. The moderator spends more time asserting/arguing that she cannot allow the speaker one extra minute than it would take to let the speaker finish the thought. This is absurd.

 

[Nielk]

Eileen Holderman gave a very strong emotional testimony outlining the realities of what has been going on at CFSAC in the past few years. She talked about the dismissal and destruction going on. The HHS agenda of redefining CFS as a broad illness. They have acted in bad faith.

Thank you Eileen for all your work and for serving us so well in your years on the CFSAC committee.

 

[Nielk]

Jennie Spotila's strong testimony - http://www.occupycfs.com/2014/06/17/comment-for-the-june-2014-cfs-advisory-committee/

 

[Sasha]

Eileen Holderman gave a very strong emotional testimony outlining the realities of what has been going on at CFSAC in the past few years. She talked about the dismissal and destruction going on. The HHS agenda of redefining CFS as a broad illness. They have acted in bad faith.

Thank you Eileen for all your work and for serving us so well in your years on the CFSAC committee.

Argh, wish I'd heard her - I was interrupted by a phone call.

 

[Sasha]

Thanks for your summaries, @neilk - huge help!

 

[GalaxiiGrl]

It's sad that the concerns, issues and questions that are brought up in the public comments will never actually be directly addressed by CFSAC or NIH. The comments just hang there out in the ether; it's as if they were never even said out loud. How can they be allowed to simply IGNORE all of this testimony?

 

[Andrew]

I just sent the following email to CFSAC. It also includes the written and documented part of my testimony.

To: cfsac@hhs.gov
Subject: Regarding my testimony


Hello,

I'd like to point out that I timed my talk and I was not given three minutes. Perhaps the person began timing before I uttered my first word. So I thank you for the additional minute to finish my point.

Because you raised the question about a printed copy of my testimony, below is a copy of my written submission, including the documentation. If you don't have access to the CFS treatment section of the Gulf War Syndrome Treatment Guide, you can obtain a free pdf version at this site: http://www.nap.edu/catalog.php?record_id=18253. All you have to do is register, and then you will have access to the free version.

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

Telephone Testimony from Andrew Bokelman to the CFSAC, June 2014


Hello. My name is Andrew Bokelman.

The HHS told us they welcome outside research about ME/CFS, but we should make sure it is evidence-based. This makes sense to me. And so now I call on the HHS to do the same. To make sure your information is evidence-based. I also ask that the HHS commit to being evidence-based, even if you have to retract something you said before, or remove it, or stop it.

And this brings me to the IOM contract. I looked at the IOM’s past work with CFS. It is not evidence-based, even when this is required. An example is the gulf War Syndrome treatment guide, which contains a section for treating Chronic Fatigue Syndrome. The section recommends exercise, and to support this they reference a journal article that doesn’t mention CFS. They reference an institutional web-based guide that cites no evidence. They reference the 1994 Case Definition, which says nothing about exercise. So at best, the IOM is speculating while looking at secondary resources. This is not evidence-based research.

I invite you to look at the hard copy of my testimony. I documented the few examples I gave. Spot check these to confirm what I said. Then contact me and I’ll demonstrate that the rest of the treatment section does not consist of sound evidence-based research.

Or maybe you think what I say cannot be true, so no need to check. After all, the IOM is a high-profile research center that uses hand-selected panels whose work is reviewed by a separate review board. But look more closely. The review board cannot compel the primary panel to correct their choices. It can only suggest they do. Nor can they review the final draft. I confirmed this with IOM staff. They defend their laissez-faire method of quality-control by saying it preserves the independence of the panel. But the proof is in the product. And their product is not evidence-based.

Now, you could just ignore what I say and hope this won’t be one more IOM disaster. But keep in mind, there is no way to undo this, once it is complete. So I call on the CFSAC and the HHS representatives here to do the right thing. Check my hard copy to see if what I said is true. And then follow up with me. Please don’t dismiss my involvement because I’m a member of the public. I worked as an analyst for 20 years, and I am the one person who can articulate my reasons for believing the rest is not sound evidence-based research. The IOM is really not qualified to handle this project, and government regulations provide a way to terminate the contract.

Thank you for letting me speak.


References:

1. Gulf War and Health: Treatment for Chronic Multisymptom Illness
By Board on the Health of Select Populations, Committee on Gulf War and Health: Treatment for Chronic Multisymptom Illness, Institute of Medicine.

The CFS treatment guide begins on page 99.

2. Harber, V. J., and J. R. Sutton. 1984. Endorphins and exercise. Sports Medicine 1(2):154-171.
http://www.ncbi.nlm.nih.gov/pubmed/6091217 (accessed November 11, 2012).

This is the journal article that doesn’t mention CFS. It did not report research on CFS. At best, the IOM is speculating, not presenting evidence.

3. CDC. Undated. Chronic Fatigue Syndrome: A Tool Kit for Providers. http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf (accessed November 13, 2012).

This is a web resource that contains no evidence. It is not a primary resource. And it is also the same Tool Kit that the CFSAC recommended be removed from the CDC website (see the recommendation here: http://www.hhs.gov/advcomcfs/recommendations/06132012.html).

4. CDC (Centers for Disease Control and Prevention). 1994. Chronic Fatigue Syndrome: The 1994 Case Definition. http://www.cdc.gov/cfs/case-definition/1994.html (accessed November
13, 2012).

This the 1994 definition of Chronic Fatigue Syndrome. The 1994 criteria (and the web page they are on) says nothing about exercise, one way or the other

 

[Nielk]

Chairman Proskauer testimony http://www.occupycfs.com/2014/06/17/guest-post-cfsac-comments-of-charmian-proskauer/

 

[Nielk]

Lori Chapo Kruger testimony https://www.facebook.com/lori.chapokroger/posts/10204044243054517?notif_t=notify_me

 

[Denise]

I just sent the following email to CFSAC. It also includes the written and documented part of my testimony.

It was really jolting to listeners when they cut you off Andrew! I am very sorry they did so.
I am glad you eventually got the extra minute to finish.

 

[Sasha]

Lori Chapo Kruger testimony https://www.facebook.com/lori.chapokroger/posts/10204044243054517?notif_t=notify_me

I'm glad people are posting their testimonies.

I thought Lori made a very good point and a great suggestion about getting us out of our orphan status.

 

[NK17]

I just sent the following email to CFSAC. It also includes the written and documented part of my testimony.

Thank you for your testimony Andrew!
You did great, even if they cut you off (and then gave you the 1 minute after).

I know how much it costs us to write, research and speak and you have done all that so well.

Please take care of yourself.

 

[Nielk]

I just have to voice here that I don't appreciate Dr. Lee's giving Eileen such a hard humiliating time when she requested another one minute to speak. Eileen gave three years of service to CFSAC. This bullying behavior has got to stop.

 

[Andrew]

I'm lucky I even knew about my extra minute. I was so sick this morning I got back into bed after speaking, and thought I had closed my cell phone. But I kept hearing something and noticed it was still open. So I picked it up to see if i was still connected. And just in time to hear about the extra minute.

The warning has nothing to do with what happened. I was not given three minutes. And I must add that even though I was able to eventually finish my talk, interrupting me wrecked the impact of what I said.

 

[Nielk]

I'm lucky I even knew about my extra minute. I was so sick this morning I got back into bed after speaking, and thought I had closed my cell phone. But I kept hearing something and noticed it was still open. So I picked it up to see if i was still connected. And just in time to hear about the extra minute.

The warning has nothing to do with what happened. I was not given three minutes. And I must add that even though I was able to eventually finish my talk, interrupting me wrecked the impact of what I said.

I am so sorry this happened to you, Andrew. I appreciate you giving your testimony even though you were so sick. I think they looked like fools - cutting you off like that. You gave a very strong testimony.