UPDATED November 10 11, 2014 (see below)
Last week, I focused on the problematic choice of several speakers for the P2P Workshop. Today, we’re going to focus on the speakers who were NOT invited to the Workshop.
How do I know who was dis-invited? I received this draft agenda for the Workshop through FOIA, and according to documents obtained by Jeannette Burmeister through FOIA, it appears to have been drafted in concert with the Working Group meeting in January 2014. It is important to note that this document may not have been shared with the non-federal members of the Working Group, as several told me they had never seen it.
According to the Draft Agenda document, the following speakers were suggested but do not appear on the current Workshop agenda (I’ve included links for the unfamiliar names):
- Valerie Anderson (has co-authored two papers with Dr. Leonard Jason)
- Dr. Italo Biaggioni
- Dr. Gordon Broderick
- Dr. David Cella (expert in patient reported outcomes)
- Dr. Dane Cook
- Dr. Mary Ann Fletcher
- Dr. Jacob Furst (co-authored two papers with Dr. Jason on case definition)
- Dr. John Gore (imaging expert)
- Dr. Arthur Hartz
- Dr. Mady Hornig
- Dr. Anthony Komaroff
- Dr. Gudrun Lange
- Dr. Kathy Light
- Dr. Ian Lipkin
- Dr. Dana March
- Dr. Vivian Pinn (former director of Office of Research on Women’s Health at NIH)
- Dr. Satish Raj (co-authored papers with Dr. Italo Biaggioni)
- Dr. Judith Richman (co-authored two papers with Dr. Jason)
- Dr. Peter Rowe
- Dr. Dikoma Shungu
- Dr. Julian Stewart
- Dr. Jon-Kar Zubieta (neurobiological basis of mood disorders)
- Patient speakers: Denise Lopez-Majano, Jennifer Spotila, Dr. Lily Chu
There are fourteen ME/CFS expert researchers on that list, eighteen if you count Dr. Jason’s and Dr. Biaggioni’s co-authors. FOURTEEN experts in ME/CFS biomarkers, pathophysiology, and clinical care who were originally proposed as speakers and who ultimately did not make the list. (Update: a commenter rightly pointed out that it is possible these experts were invited and declined. I’ve sent inquiries to see if I can determine how many may have declined. I’ll report what I find out.)
And to bring it full circle to last week’s post, three speakers on the current agenda were not originally proposed: Dr. Andreas Kogelnik, Dr. Niloofar Afari, and Dr. Daniel Clauw.
Here’s the $64,000 question: who at NIH decided it was a good idea to invite Dr. Afari and Dr. Clauw to address how to foster innovative research in place of, for example, systems networking pioneer Dr. Gordon Broderick or long-view Dr. Anthony Komaroff or infection/immune guru Dr. Ian Lipkin?
How does this make any sense for a Workshop that will charge a group of non-ME/CFS experts with making recommendations on future ME/CFS research?
UPDATE November 10 11, 2014: I reached out to the ME/CFS experts on the original list to see if any had been invited and declined. Of the ten who responded, six were not invited and three were invited and declined. One was invited and accepted, and a source told me that the agenda will be finalized soon, so we may see some changes.
The NIH website says it’s a draft agenda, so can we ask for changes to this draft? What change do we want to ask for, and who do we ask?
How can we use this information in communicating with our senators and Congressmen? What do we ask them to do about it?
Frightening. That Eurythmics song, Here Comes That Sinking Feeling has just started up in the background of my thoughts. All I know of it is that line, plus the chorus of “here it comes, here it comes again.”
If you want to protest the agenda or ask for different speakers, I suggest contacting the Office of Disease Prevention directly. You can use their contact form: https://prevention.nih.gov/contact-us or email Dr. David Murray, Director of ODP.
In terms of contacting your Congressmen, I suggest expressing your concerns about the agenda and that this could not only lead to bad recommendations but it could harm patients. Ask them to inquire with ODP about the agenda and express concern about making sure the best science is discussed so that the best recommendations result. It would be great for ODP to get a few Congressional inquiries.
Do we know for sure these were not invited and refused for one reason or another? Forgive me if you mention that. Bad night for sleep last night.
Good question, Tina. I know of one speaker who was invited and declined. There may be more. I would love to know.
I think some assume that people aren’t invited when, in fact, they were invited but declined. I see you know one who did receive an invitation and decline. Like you, I question some of the “expert” speakers as being the best choice for this workshop. But it is possible a better expert in that area was invited and declined. We can’t assume.
I’ll see what I can find out.
how more obvious do things have to be there is corrupt criminal activity at the highest level of the cdc and your government
the rest of the world especially us in australia have benefited american help in wars etc but we certainly dont appreciate having so much maheem heaped on us over a ridicules illness name change just for the usa to save money on disease classification it sucks and we cant help you much or if we can tell us
The patient community is lucky to have active patients/advocates/attorneys like Jeannette and Jennie for all their endeavors to bring to light what really should be readily available to the public.
I am very grateful to you, Jennie for your constant and consistent effort to bring the true facts to light. Your analysis is appreciated by all. I know how much all this must be taking a toll on you.
I have to admit though, that I cannot be surprised anymore by these acts by HHS. It is clear to me that they have taken the CFSAC committee’s recommendation to convene a workshop to work on the research and diagnostic criteria for ME/CFS starting with the CCC and made a decision to do the opposite.
In lieu of refining the current criteria and select out ME from CFS and/or find subsets to the disease, they decided instead to muddy the waters more than ever. They decided not to start with the CCC but to include every single criteria whether good, bad or ugly. They decided not to select anything out but to include every real and/or imaginary symptom into the pot.
It is not surprising then that they welcome anyone with any type of slant to speak at the workshop. They want to see people there who promote CBT and GET. This is their intent – not a mistake or omission. They want to achieve a stew that is all cooked so long that one cannot recognize any ingredient anymore. They then will have a taste test by a committee of people who are culinary wise ignorant and will ask them to try to guess what the ingredients are.
This workshop committee in December (the jury model) will have to listen to what the HHS has decided to present to them and then quickly come to decide on our fate.
By the way, if they would have had any sense of a show of sensitivity to the patient’s voice don’t you think that they would have asked for a panel of advocates to appear – like it is initially mentioned? I have nothing personally against the advocate that they chose but, he is the same one that was present at the first workshop. Why not hear some other voices….that is if they would care. Obviously, they don’t want to hear us.
In my opinion, this whole process is a sham.
I don’t even see Dr. Jose Montoya’s name here nor any of his associates. Is this true? Their discovery of three types of brain abnormalities using high-tech MRI imagery is a breakthrough.
Interesting who they left out. They really want non-experts, non-scientists. It
really is an attempt by the government to make the grade, hold the meeting so they
can’t be accused ot ignoring ME/CFS entirely, and then push everything back under
the rug again. And, ignoring science, of course.
I’d be for compiling a lot of articles on the scientific discoveries and putting
them all in packets or together online and flooding every single person on
that “committee” with all of that.
Dr. Montoya was not suggested as a speaker (according to this FOIA document written in January 2014) and not invited to speak.
You can see the Workshop agenda as it currently stands here: https://prevention.nih.gov/programs-events/pathways-to-prevention/upcoming-workshops/me-cfs/agenda
We could put packages together, Kathy, but we don’t know who to send them to. The Panel members will not be announced until the first day of the Workshop, with the exception of the Chair – Dr. Carmen Green from the University of Michigan.
One question would be HOW that list of experts were generated, which may or may not be discoverable. Did they rely only on TEP members or CFSAC staff or NIH staff, etc. to make up the list? Or some combination? Did they consider suggestions from the public? I for one nominated Dr. Montoya as a member of the public and I doubt I was the only one.
As far as I can tell from the emails that have been released, this proposed list of names was generated at the Working Group meeting. Most WG members are feds, with five nonfeds attending that meeting. Who did what to the list after that meeting is not yet known. However, we do know that the TEP only advised on the evidence review protocol, probably some time in March.
Jenny – have these potential speakers maybe been given the opportunity to give a written submission as an alternative to attending in person ? Arranging a date for everyone in a particular medical field to attend is nightmarish if it isn’t booked at least 12 months in advance, so I’m not sure that the achieved ‘hit rate’ is exceptionally bad.
Only tangentially related but I’ll post it here for convenience, this development in the UK may have wider ramifications: http://forums.phoenixrising.me/index.php?threads/nice-remove-m-e-from-neurological-listings-uk.33628/#post-520467
Quote
NICE have made this decision on the basis of a survey (published in 2011) which found that 84% of neurologists in the UK did not believe that ME/CFS was a neurological condition. They are now intending to place ME/CFS in a category of its own. Members of the Forward ME Group (MEA included) are all involved in how we should now respond to NICE on this. Charles Shepherd MEA
Unquote
The NICE decision makes no impact on how ME is recorded in the UK in terms of the ICD – that will remain as WHO G93.3, however as I’ve previously argued http://phoenixrising.me/archives/23892 reliance on the ICD or ICD-CM as a secure anchor for defining ME/CFS is not tenable and advocates need to update their approach accordingly.
As far as I know, written submissions are not part of the P2P process. You make an excellent point about scheduling. As of this moment, two people I contacted were invited and declined. Neither of them specified it was for scheduling reasons.
Great work Jennie! Yes it’s true that some may have been asked and declined – but I’ll bet most were not asked…Your blog makes it clear that the feds wanted some people on there and they got them…
Blah!
Keep up the good work!
A panel on Diagnosis and Treatment and Dr. Rowe was not invited? Hard to believe…What about Dr. Peterson.
I wonder if Buchwald and Afari even see patients.
Jennie, many thanks again for continuing work while sick–don’t push it too far!–and bringing the results to us, even if the response is dismay–though not surprise. If one puts this list together with the stuff Jeanette Burmeister has released (I have not had time/energy to read much more than her synopsis) it seems clearer than ever that this really is a coldly calculated shot at cutting us off from anything but CBT, GET, pain meds, and vitamins and supplements–until the FDA complete their program of denying us these. This is modern US medicine at work!
So rather than Gordon Broderick (I realize he may have refused) we have Niloofar Afari–I quote from one of her essays, “Psychological trauma and functional somatic syndromes: a systematic review and meta-analysis,” Jan. 2014, Psychosomatic Medicine, PMID 24336429: “This meta-analysis systematically examined the association of reported psychological trauma and ….PTSD with functional somatic syndromes including fibromyalgia, chronic widespread pain, chronic fatigue syndrome….”
And instead of Ian Lipkin (same reservation) we have Daniel Clauw, “Functional somatic syndromes as risk factors for hysterectomy in early bladder pain syndrome/interstitial cystitis”, J Psychosom Res, Sept 2014, PMID 25258358. He too has bought into the “FSS” notion, though he has also done a good deal of work on fibromyalgia and pain issues, so may have interesting things to contribute, though appears to have no substantial interest in ME/CFS. I think Ian Lipkin would have had a great deal more, or Mary Fletcher, or Mady Hornig, or Kathy Light, or…. And of course the “disinvitation” of Denise Lopez-Majano, Jennifer Spotila and Lily Chu from the patient slot makes it clearer than ever that they do not welcome our input. Shame on them–for any of these three could have put relevant evidence to the panel with balance and courtesy. Shame on them!
The evidence presented in Jeanette Burmeister’s summary of the documents released in response to her FOIA demand (see her blog, http://thoughtsaboutme.com strengthens the evidence that the NIH don’t want us around (though they will give us a “nice nod,” and are nervous about the possibility of negative media coverage–they do read stuff we post, and who knows, it may get around…. Jeanette gives us a wonderful quote from Susan Maier “Fasten your seat belts and return your tray table to the upright position because it’s going to be a bumpy ride”–a metaphor that only makes sense in the context of an already determined destination for which a weather report warns of strong headwinds and turbulence. Jeanette also provides evidence that a Power Point presentation from the Oregon Health and Science University listed CBT and GET as the treatments of first choice, with “vitamins and supplements” as second line. In view of all that and now this revised list of speakers, with two defenders of the “functional somatic syndrome” concept, one explicitly including CFS within the term, it is hard to avoid the conclusion that this is indeed a rigged process with a predetermined conclusion. We are going to get CBT and GET and maybe some pain meds–and if we don’t like those, run the danger of being referred to a psychiatrist….and we have learned where that can lead. What we (I am a Canadian, but our fate is very dependent on what happens in the US) face is the current form of medical treatment in the US, which seems determined by insurance company decisions (WellPoint “no payment for Autonomic Nervous System testing for CFS”) rather than by research, and is subject to the ever growing imperialism of the psychiatry lobby, via its latest invasion army, DSM-V (grieving the death of a close relative for over two weeks puts you in line for psychiatric intervention.) And of course there are those ever threatening “functional somatic syndromes.”
God help us all, unless Obama intervenes–didn’t he send an emissary to the NIH on our behalf a while back, who quickly quit if I recall correctly–as did Dennis Mangan after opening a brief window of hope. Something is going on within the bowels of the NIH that needs to be brought into the light–we need a ghost catcher ( the ghost of Straus), as well as the help of the world’s leading virus hunter.
Obama has intervened already. It’s clear he ordered the NIH to make the problem go away, which is exactly what they are doing.
I would like to think that Obama, without having really researched the problem, said something more like “please do something to help patients with ME/CFS,”and it was NIH that chose the path of continuing to “disappear” the disease. But I could be wrong–often am.
It’s just very clear to me that the government wants to hold a meeting pro forma to make the record, and then push ME/CFS under the rug again. The federal government administration does not want to recognize another disease, fund research on its cause and treatments, fund disability benefits and medical care either by private insurers or government programs.
This is so clear. The NIH and HHS will hold meetings and discussions to say “yes, we held meetings on this,” so they formally did something, and then they’ll promote exercise and CBT and then do nothing again. This is very calculated. It is not an accident.
I am so glad that Jeanette Burmeister won her case on her FOIA request and attorneys’ fees. I know we are all cheering her on. But what can be done to further along her victory? To take what she’s won and run (or walk) with it?
That and the making of new documentaries on ME/CFS must make a dent somewhere in all of this cloak-and-dagger secrecy and inaction by the government.
Something has to give here.
Another fine column Jennie. Regarding Kathy D’s thought on furthering Jeannette’s victory, I have a thought. We need a systematic method to get the plotting and negative attitudes out on the record. Perhaps something like Buzzfeed would let us (led by Jeannette and Jennie and a few other coordinators) run lists like “the ten meanest things NIH said about ME patients in the last three months of 2013.” Or “the ten most aggressive redactions.” This under an umbrella article explaining the cruel folly of P2P.
**I will have a video out very soon of my objections (taken from the comments on the Evidence Review) to P2P as being designed for Prevention of Scientific Research.
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