Home > Advocacy > Guest Post: CFSAC Testimony of Andrew Bokelman

Guest Post: CFSAC Testimony of Andrew Bokelman

June 19th, 2014

Andrew Bokelman was scheduled to deliver public comment to the CFS Advisory Committee on June 17th and was the first telephone commenter. His call was terminated by the operator prior to his 3 minutes being up. After protest on Andrew’s behalf from CFSAC members, Marty Bond apologized to Andrew and he was given an additional minute to speak (which he discovered only because he accidentally had not terminated the call). We also learned that written comments from the public were not provided to CFSAC members as per usual. Andrew gave me permission to publish his comments in full.

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.

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 PDF version. 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.

 

  1. Justin Reilly
    June 19th, 2014 at 08:45 | #1

    This is excellent. Thank you for this Andrew!

    And sheesh, they didn’t give the written comments to CFSAC!! We get told about these meetings often times very late, then we have to wait for them to give us the ok to send in comments (they will not accept comments until they announce they are accepting them) and then the comments must come in a week before the meeting! This small window between when they tell us “go” and the window closes is often around a week. Not enough time for a severely disabled population like us. And then they don’t bother to give the committee the comments!! Every meeting it seems like its another disaster by HHS.

  2. Gabby
    June 19th, 2014 at 09:15 | #2

    Thank you , Jennie for posting Andrew’s testimony here. Andrew makes a very strong case here. He has testified about this before as well as other advocates. We have yet to hear a reply by HHS. They just calmly ignore and forge ahead with their agenda.

    What is the point of patient/advocate input if it is not heard, acted upon and/or replied to?

    His points are well researched and referenced. It can be easily checked for its accuracy.

    If the system is failing, the product is unsound.

    The fact that we have a few more “experts” on our IOM committee should not placate anyone.

    If the system cannot be relied upon, the product is substandard.

  3. Ren
    June 19th, 2014 at 15:40 | #3

    If I’m not mistaken, these observations (as well as others) were censored/deleted by National Public Radio (NPR) when NPR shared a brief news release regarding the IOM ME/CFS project.

    Thank you, Andrew, Jennie, and all.

    Additionally, “…the Obama Administration is firmly committed to the highest standards of scientific integrity.”

    http://www.whitehouse.gov/blog/2011/12/21/scientific-integrity-policies-increasingly-place

    At what point can IOM and P2P be held accountable for research misconduct?

  4. Carrie
    June 19th, 2014 at 16:42 | #4

    Way to go, Andrew! Excellent comments!!!

    Thank you Andrew, and thank you Jennie for posting this.

  5. Ess
    June 20th, 2014 at 00:19 | #5

    Great job, Andrew!! Please keep on it!!

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