Sometimes, there’s no real news to report because things are running in the background. If you are a Mac user, then you are probably familiar with the beach ball of death. It just spins and spins while you wait for your Mac to catch up and be functional again. That’s where we are advocacy-wise right now. I’ve got news but not news, if you know what I mean.
Don’t Worry, It’s Fine
There was a flurry of emails from NIH’s Office of Disease Prevention to myself and other advocates this week. Essentially, these emails boil down to: We gave all the comments to the Panel. They had all the time they wanted to revise the P2P report. The report will be published on June 16th.
But what about the fact that the documents released in response to FOIA requests do not contain all the comments? Rumor has it that there will be another FOIA release soon. It remains to be seen if that release will finally include all of the missing comments. We also don’t know if that release will go out before the June 16th deadline.
In other words, NIH is telling us that they fixed the problem and we shouldn’t worry about it. Personally, I think we need a little more than that. I would like to hear the Panel explain how they handled this public comment fiasco. And of course, we have to see what is in the FOIA release.
There will be a press telebriefing at 11am Eastern on June 16th. The Panel will discuss their findings and take questions from the media. Anyone can listen in on the briefing, and it will be available for playback shortly thereafter. More information on how to join that call can be found here.
Wherefore Art Thou, CFSAC?
This is a time of transition for the CFS Advisory Committee. A new Designated Federal Officer has been appointed to replace Barbara James. Dr. Ledia Martinez has a background in HIV/AIDS issues, and coordinating programs at the Office of Women’s Health.
Some of the other needed replacements have been made. Dr. Jeffrey Kelman replaces Alaine Perry as ex officio from the Center for Medicare and Medicaid Services. Dr. Suchitra Iyer is the new ex officio from the Agency for Healthcare Research and Quality. This is interesting because Dr. Iyer was the contract officer on AHRQ’s systematic evidence review produced for the P2P meeting.
No replacement for Dr. Mariela Shirley from NIH has been announced, so Dr. Susan Maier will serve in that capacity. No word on the new non-voting liaison members of the Committee. And Dr. Gary Kaplan is still listed on the roster, although his term expired on May 15th. No word on whether he will be extended or replaced, but the lack of a solicitation for nominations probably suggests which way that is going.
And the spring meeting that was rumored to be happening in June? Probably not happening in June.
Oh, And By The Way
There was no announcement or fanfare, but AHRQ has published the disposition of public comments on the systematic evidence review. This is a required step in AHRQ’s process. They have to publish how they responded to the public comments on the draft evidence review. They received a lot of comments, and the response document is 274 pages long. I haven’t had a chance to read it yet, but I don’t think much of our collective response document made it in there. Thanks to Maureen for finding the disposition document!
Jennie,
Have you seen CFSAC’s site as of late? http://www.hhs.gov/advcomcfs/
There is a message from Ledia Martinez (DFO) commenting on the IOM report and stating: “We are committed to working with our Federal partners, stakeholders, and experts in the field, as well as with the HHS Chronic Fatigue Syndrome Advisory Committee, to review the report’s recommendations and appropriate next steps.”
Do you know what she means by this? Is there a committee or workshop of federal partners, experts and stakeholders working on reviewing the IOM report in order to recommend “appropriate steps”?
I don’t believe this is anything new.
This looks to be the same message that has been on the CFSAC homepage since shortly after the IOM report was released (and before Dr. Martinez became DFO).
In fact, the CDC website refers to this statement (http://www.cdc.gov/cfs/toolkit/archived.html): The website of the HHS Chronic Fatigue Syndrome Advisory Committee includes the following comment about the IOM committee report: “With their recommendation of a streamlined, yet evidence-based set of diagnostic criteria, the IOM committee has taken a critical step toward assisting medical providers in making a diagnosis for those with this serious and debilitating illness.” The website also states that the HHS agencies are committed to working with partners, stakeholders, experts in the field, and CFSAC to review the report’s recommendations and appropriate next steps.
The CDC website references the statement on the CFSAC homepage:
“The website of the HHS Chronic Fatigue Syndrome Advisory Committee includes the following comment about the IOM committee report: “With their recommendation of a streamlined, yet evidence-based set of diagnostic criteria, the IOM committee has taken a critical step toward assisting medical providers in making a diagnosis for those with this serious and debilitating illness.” The website also states that the HHS agencies are committed to working with partners, stakeholders, experts in the field, and CFSAC to review the report’s recommendations and appropriate next steps.”
http://www.cdc.gov/cfs/toolkit/archived.html
The date on the CDC page is April 7, 2015 which is before Dr. Martinez became DFO.
That federal partners quote is from the HHS comment after the IOM report was released in February.
The only group I’m aware of is the CFSAC Working Group which is formulating recommendations for CFSAC on what HHS should do re: the report. CFSAC will have to vote on those. Then HHS can respond or not as it chooses.
I have heard that CFSAC was working on this but, didn’t know that stakeholders and experts were included as well. Unless by experts and stakeholders they mean CFSAC members?
I believe that in addition to CFSAC members, stakeholders and experts are on the Working Group – just as they were on the Working Group that developed the comments on the P2P draft.
The working group is comprised of some of the voting CFSAC members, some of the ex officios, at least one nonvoting liaison, and several advocates. I don’t know if there are outside experts included beyond those advocates.
Thank you.
Will this the results of this workshop then have to be revealed at a CFSAC meeting to be voted on by the voting members?
This should work just like the process for their P2P comments or any other subcommittee work. Proposed recommendations must be brought to the full committee for discussion and vote.
Thank you and all the other involved advocates for your continued and extensive efforts to follow up on this. It’s tiresome and frustrating and energy-draining to keep having to go back, after getting an answer that doesn’t exactly respond to or that sidesteps the question, to explain why the answer wasn’t responsive and on and on an on. Thanks again.
Regarding the multiple changes in the Office of Women’s Health and CFCAC, I and many others have concluded that neither the Office of the Assistant to the Secretary (of HHS), under which the OWH operates nor the OWH is making CFSAC a high priority, but no surprise there. ME/CFS has no home; we are not even step-children; we are starving, homeless orphans. There is no date for the next CFSAC meeting (unconscionable), no indication of which organizations will be the new non-voting members, no real assistance much less inter-departmental advocacy for ME/CFS or CFSAC, certainly no leadership from the OWH (Barbara James would have been very good, imo, had she not retired). Even when CFSAC was being attended to in a somewhat organized way by the OWH staff, the HHS chose not to listen to our recommendations anyway. In addition they have cut two public, in-person meetings to one and have one audio webinar, which is virtually useless, except to meet the letter (but not the intent) of the mandating regulation.
If the diseases dealt with by the HHS can be compared to the Indian caste system, we are at the bottom; we are the untouchables. All of this blundering and going in circles adds to the arguments for getting ME/CFS/SEID out of the OWH and into an HHS institute like Neurology.
I think this is all bureaucratic double-speak which is meant to hold all ME/CFS sufferers and advocates at bay, hoping we’ll be content with a few crumbs of information, but with no substance.
We have to wait and see what happens but it does seem like the federal health agencies want to, once again, bury ME/CFS and even ignore what its own IOM panel said.
I feel like one of the French peasantry hearing Marie Antoinette proclaim, “Let them eat cake!”
Until I hear or read something of substance coming out of the HHS or NIH about our disease that’s meaningful and positive — and has research dollars behind it — I think they are suffering from inertia or a lot worse, trying to again sweep our disease under the rug. I’d love to be proven wrong.
Thank you for your follow-up of all this, Jennie, and for sharing the responses to our comments on the AHRQ report.
At least we can see that somebody read our comments, however bland the responses. I haven’t read it all of it yet. My comments, #56 and their responses start on p 207.
It is interesting to see White et al engaging in extensive semantics about the claims of harms from GET. (right at the beginning and throughout on various issues) As far as I can tell, they defined PEM out of existence so that it is counted as a ‘normal’ reaction to exercise and not as an adverse reaction. Any comments on this?
At least AHRQ watched ‘Voices from the Shadows’, but this bit is really worrying:
‘Thank you for directing us to the “Voices from the Shadows,” a videotape we previously reviewed and also found very informative. We have expanded the applicability section of our report to address the fact that the most severely affected patients would have been excluded from most trials, given that they would have been required to attend sessions. One of the future research needs may be to include funding for directly observed home care interventions, including home exercise’. p208
It seems AHRQ have been well and truly brainwashed into the CBT/ GET model and they give themselves away and their lack of understanding by suggesting exercise for the severely affected patients.
How do you get through to these people? I hope P2P does a bit better than this.
“One of the future research needs may be to include funding for directly observed home care interventions, including home exercise’. p208”
Yes, who cares if I can get to the grocery or even the shower, as long as some official observes a therapist browbeating me into doing their damaging exercise programs.
These people are beyond clueless. They wouldn’t recognize a clue if it beat them with a stick while screaming, “Wake up Fool – I’m a Clue!”
I agree with you Jim, this is extremely worrying as I also read above that for CFSAC, ‘Suchitra Iyer is the new ex officio from the Agency for Healthcare Research and Quality. This is interesting because Dr. Iyer was the contract officer on AHRQ’s systematic evidence review produced for the P2P meeting.’
I hope she won’t be quite so impervious to evidence and explanation when she is on CFSAC (if I understand correctly).
Suchitra Iyer is the new ex officio from the Agency for Healthcare Research and Quality. This is interesting because Dr. Iyer was the contract officer on AHRQ’s systematic evidence review produced for the P2P meeting.
AHRQ’s home (torture) recommendation reminded me of this:
Rick Steele (Denmark – 2009): “The common endpoint for these syndromes [medically unexplained syndromes, including GWS, CFS PVS, etc.] is a disability pension. The enormity of this problem boggles the mind. Merely supporting this group of patients financially rivals half of the public outlays for health care or social benefits in northern European countries…”
And recommendations then from authors in Denmark (Steele), Australia, and New York: “We assume the patient has issues and delve into these issues… This requires a physician highly attuned to MUS and able to tease typical somatic problems and psychosomatic problems apart… treatment is delivered in the patient’s home… The value of this is great as most of our sessions leave the patient with heavy thinking to do… entering the home gives the experienced physician/therapist much information regarding the patient and her relations to others and her material surroundings… the information thus gathered is instrumental in devising the next therapeutic thrust for the patient, especially in terms of the cognitive training.”
http://magazine.jhsph.edu/2009/fall/online_extras/alumni_dispatches/richard_steele/
http://www.ricktig.dk//klinikken-livet/A Novel and Effective Treatment Modality_JPM 1#4.pdf
Yesterday I received the third (and final??) installment of P2P comments. It included a letter explaining how emails were sent into deleted directories, etc. It certainly seems plausible.
As I understand it, more and more basic functions in these agencies have been outsourced to consulting companies. That means a steady stream of outside people circulating through, and none of them know the history of the operation or how stuff is set up. As for documentation, well, there is never time or budget allocated for that. (“We’ll do it later…”) And nobody would bother to read it anyway…
You might find some of this information useful for what it’s worth.
https://www.muckrock.com/news/archives/2013/jul/12/jason-leopold-foia-terrorist-shares-his-transparen/
A most informative essay!
“I always encourage requesters to file FOIAs for the “processing notes” and administrative case files related to their requests as it provides valuable insight as to what takes place behind the scenes when you file a FOIA and how your request is handled. Once you receive a case number wait a couple of months and file a FOIA for the processing notes related to that case number. ”
That’s brilliant! I have long thought that the records behind Jeanette Burmeister’s FOIA fiasco would make very interesting reading. I would be most interested in finding the names of the HHS officials that decided to stonewall Jeanette. Mr Leopold has revealed how to get that info.
The processing notes behind the P2P comments fiasco could be entertaining…