Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Dec 5, 2013.
Thanks to all those involved in this project. It's exceptionally helpful.
I reckon the above quote is exactly the sort of outcome that we should expect from the IOM process. In my opinion the evidence has not moved on substantially enough since 2001 such that the above conclusions would be drastically altered.
I think the most we can expect is that the IOM will accept the need to define a separate patient cohort (or subset) based on PEM and ME definitions. (Which would be a good outcome and worth advocating for, in my opinion.)
The bolded text suggests (at least some) understanding of the poor nature of the published literature on CBT/GET. However, despite the wording being carefully chosen, the wording doesn't fill my heart with joy.
Perhaps it will be useful (or not unhelpful) to have such a perspective on the panel. Perhaps it would be helpful to bring the committee members' attention to the Rituximab research, in case it helps to influence their overall perspective. But unfortunately the Rituximab research isn't advanced enough to make much difference to the overall evidence base.
This looks good, as does the rest of his profile.
And from his website (not specifically related to CFS/ME):
I have an issue with the fact that we are only going to be informed of "narrowed" conflict of interests.
I want to also know other conflicts of interest other then current financial eg has the person worked for an insurance company in the past (if so they may not want to truely see this illness differently to previously based on decisions they've made in the past.. no one likes to admit to themselves that they were very wrong esp if their decision may of been harming their clients/patients).
This goes for doctors who may end up on the panel who previously just send any ME/CFS to just a psych.. Most doctors who are non experts in ME/CFS already have an ingrained view in how this illness should be treated eg GET and CBT so that is a danger of having non expert doctors on the panel. After thinking to send ME/CFS patients for GET and CBT for the past 10 years.. how can one go and even think that some of that idea may not of rubbed off on the doctors when that is what most of them have been doing.
I also would like to know if the person work also for a gov dept which was has shown major biased towards ME/CFS eg those who work or previously have worked for the CDC where we all know there has been major biased towards our illness over the years, could end up on that panel. That is a conflict of interest.
I wish we were going to be given the full picture eg any known conflict of interest.
Id love to hear from any previous ME/CFS who seen one of these doctors to know what attitude the dr held in regards to it and us in general. (was the dr open and listened to the issues the person was sharing even if the dr couldnt help? or did the dr feel strongly the person should be sent to CBT and GET without listening to them?).
The decision was made to look most closely at what IOM would consider a conflict of interest in part because of time considerations. The team doing this work wanted to get information to the community as quickly as possible because from the date of posting, there are only 20 days to submit comment on those on the roster. In terms of submitting public comment on people, IOM would likely give more weight to conflict of interest information that is in line with their policy.
Developing a broader definition of conflict of interest that the community would agree might have taken several days, if not weeks.
That said, any and all information that people find and post would be greatly appreciated.
I totally agree with your post, I want to know about any biases or conflicts of interest. Though the fact that most or all of the non-ME experts are academics/researchers limits greatly the amount of patients they have seen.
But I think that we really need to look really closely at Mulrow and Alegria.
Mulrow has written some pretty bad stuff in the past on ME, only recommending GET and CBT and the only GET studies she looked at were Oxford studies which she and her coauthors rated highly. They also said they came across a paper on CBT that was aimed at reducing activity in ME patients and they said they might not even consider that to be CBT because its aim was not to promote GET!!
Jennie and co. Say the following paper along with another and several workshops, makes Mulrow "very qualified" for the ME panel.
Graham R, Mancher M, Wolman DM, Greenfield S, Steinberg E, eds. Clinical Practice Guidelines We Can Trust. Washington, DC: National Academies Press; 2011.
But, check out this damning critique of that paper:
Are the Institute of Medicine’s Trustworthiness Guidelines Trustworthy?
“The IOM standards for the development of Clinical Practice Guidelines do not meet their own criteria of trustworthiness. Further study is needed to determine the best methodology to evaluate CPGs.” [emphasis added]
That paper makes her very unqualified for this panel, not "very qualified."
Alegria has written at least 3 study papers on Neurasthenia and supervised studies by at least 2 grad students on it. I want to see what they say but they are all behind pay walls I think. Does she equate Neurasthenia with ME?? She has also authored a paper on somatic symptom disorders.
Prevalence of neurasthenia, comorbidity, and association with impairment among a nationally representative sample of US adults
"Less acculturated individuals were at a decreased risk for lifetime and past-year neurasthenia. Lifetime neurasthenia was associated with increased odds of meeting lifetime criteria for any depressive, any anxiety, and any substance use disorder...
Neurasthenia is a prevalent condition deserving further research attention given its comorbidity with other psychiatric disorders and its association with functional impairment." [emphasis added]
Read the paragraph with the highlighted words in the following book. The full cite for the two papers is at the top of the following page.
http://books.google.com/books?id=LOU1L3v1DaQC&pg=PA50&lpg=PA50&dq=alegria neurasthenia&source=bl&ots=vgQ5yj7ccE&sig=s1qdsNjIss23QB7rsfvJjCA_9Sg&hl=en&sa=X&ei=pDegUofIHIbakQeVroDQCQ&ved=0CEAQ6AEwBDgK#v=onepage&q=alegria neurasthenia&f=false
I think even just knowing what we know now about these two, they are both completely unacceptable.
I also wonder about Dr. Cleveland, a psychologist focused on symptoms (in cancer). In some respects he seems ok, but Id like to see deeper digging into this guy to see I f there are any skeletons.
Neither ALegria's work on NEurasthenia nor Mulrows on ME were disclosed in their bios. Such nondisclosure of biases and conflicts of interest is typical of IoM panels according to the Center for Science in the Public Interest Report.
Justin, pay attention, please. Jennie and others in no way endorsed anyone or spoke to qualifications from the community's viewpoint at all.
this post spoke to the unknown panelists' backgrounds, and COIs as IOM would look at them.
It was decided to post the gathered information as soon as possible so everyone could use it as a starting point and do what they liked with it.
Any additional information is appreciated.
@WillowJ , Your advice that I "pay attention" seems to me to be a little condescending.
You are saying that I was incorrect in stating that Jennie said Mulrow was "qualified." Here is the first sentence of the fourth paragraph in her section on Mulrow:
Hi justin, did not mean to be condescending at all. I missed that sentence, obviously. But I don't think it's reflective of the intent of the piece.
As of today we have 16 days (til 23 December 2013) to submit comment on the IOM panelists.
To give everyone info that may help substantiate comment, info on the "unknown" panelists was posted 2 days ago and
today info on the "knowns" has been posted on OccupyCFS blog.
"IOM Panelists: The Knowns
December 7th, 2013 Jennie Spotila Leave a comment Go to comments
In this post, we present profiles of the eight members of the Institute of Medicine ME/CFS definition panel who are known to the ME/CFS community in some capacity. Many, but not all, of them are ME/CFS experts in that they work predominantly in that area. You can read about the team who put these profiles together and the methods we used in this previous post.
Important disclaimer: Many of us know one or more of these panelists quite well. They are our doctors, our colleagues, our friends. We strove to be as objective as possible, and applied all the same research methods and questions here as we did for the other panelists. ...."
I share unease about Mulrow and Alegria, but feel more optimistic about the panel as whole than I had expected to. There are strong people here, including Davis, about whom I had known nothing. I think any attempt to minimize or psychologise ME would get short shrift from Klimas, Natelson, Davis, Keller, Bateman, and others, all attacking from different perspectives. The fact that several have or had ME themselves, or have close relatives with it, would give even more energy to any necessary refutations; in fact, I think even if we can suspect Mulrow and Alregria of habouring such thoughts, I think they would be very hesitant to put them forward in such company. Chris
Please ignore if posted elsewhere (-and this isn't earth-shattering info but instead meant to help flesh out a larger picture...):
The committe for GW&H Treatment for CMI (2013) (http://books.nap.edu/openbook.php?record_id=13539) included psychiatrist Javier I. Escobar.
GW&H (2013) references various works by Escobar, including a 2010 paper which includes as a co-author psychologist (?) Margarita Alegria.
(I imagine this This is the paper mentioned in the OccupyCFS bio of Alegria: http://www.occupycfs.com/2013/12/05/iom-panelists-the-unknowns/) Also of note: this paper is not listed on the info page on Alegria which OccupyCFS links to: http://nhsn.med.miami.edu/x161.xml?id=m_alegria
The GW&H (2013) chapter "Chapter 5: Review of Treatments for Comorbid and Related Conditions" section "Substance-Use Disorders and Chronic Multisymptom Illness*" citation is:
"Regardless, the presence of three or more current general physical symptoms, whether medically unexplained or not, is positively associated with the likelihood of a substance-use disorder (Escobar et al., 2010)." (p.114)
Escobar, J. I., B. Cooke, C. N. Chen, M. A. Gara, M. Alegria, A. Interian, and E. Diaz. 2010. Whether medically unexplained or not, three or more concurrent somatic symptoms predict psychopathology and service use in community populations. Journal of Psychosomatic Research 69(1):1-8. (p.125)
*Please remember that at least one VA webpage names "CFS" as a chronic multisymptom illness: http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp
Additionally, does anyone know if Spanish-language sources have been checked (or should be checked) with regard to Alegria? (I don't have Spanish skills.)
Alegria's bio http://nhsn.med.miami.edu/x161.xml?id=m_alegria states that she is "a full professor in the Department of Psychiatry at Harvard Medical School in Boston, Massachusetts."
Would Alegria have any influence regarding the recent medical kidnapping of a teen by psychiatrists at Boston's Children's Hospital?
As discussed in a thread by leela http://forums.phoenixrising.me/index.php?threads/another-medical-kidnapping.26797/ and linking to the media story also posted by leela: http://westhartford.patch.com/group...ht-hospitals-kidnapping-of-west-hartford-girl
If everyone on the committee has strong opinions going in, then the end result will have no credibility. A few token with a different perspective going in but with an open mind may work to our favor. As you said, there is plenty of people there that know what the disease is and is not from clinical, research and patient experience. I can't imagine two people on a 15-member committee would be much of a threat. Even if they were gun ho pro psych view of the disease. I will also say that we need to be careful to say that anyone who says anything favorable about GET or CBT has a psychiatric view of the disease. First, I have found that docs have different definitions of CBT and GET. Some may use it thinking one thing, while the Simon Wessley followers use it to mean another thing. Some say Klimas recommends GET. But if you look closely, she never recommends pushing. Also, I know of someone with lots of ME/CFS patients who commonly recommends her patients see a psychologist who knows the disease. The reason is to help the person cope with the losses from the disease, the struggle, family problems, etc. She said she wants to prevent the person developing depression. Also, I have seen some describe CBT as learning coping strategies and behaviors that prevent relapse, such as learning how to effectively pace. Some have used CBT to describe that type of training.
So, with different ways people, even experts use these terms, it's especially hard to know what is in the mind od nom-ME/CFS experts when they use these terms.
I go back to the question of whether there is enough representation on the committee of those who really know the disease. I would say yes.
Your assessment doesn't match even your own earlier goal of 75% experts on the committee.
I really disagree. CCC and ICC are the most credible. People went in with strong opinions bc they were experts in the disease. And it's not really a matter of strong opinion, but well-informed opinion.
Do all of the diagnostic criteria for other diseases that are written exclusively by experts have "no credibility"?
I have a favorable opinion of the good CBT that seeks to help people adjust to the limits of the disease.
However, as I noted above, Dr. Mulrow stated that she doesn't even think this type of CBT is actual CBT because it doesn't push GET!!
You might be interested in Natelson's bio, i.e., his Post-doctoral training/interest in Behavioral Medicine:
PubMed search of his CFS articles (119) of which approx. 35 are published in psych journals like:
Journal of Psychosomatic Research
Journal of Affective Disorders
Journal of Nervous and Mental Disease
Excerpts from his work:
"An individual's psychiatric history should be considered when attempting to understand the factors maintaining disability in CFS." PMID 12819552
"Although the ailment clearly can occur after severe infection, no convincing data exist to support an infectious (or immunologic) process in disease maintenance." From "A Status Report on CFS", 2002 PMID 12194905
Presenting at Mass. CFIDS recently, he stated his preference for the term "Medically Unexplained Symptoms"
I have not been able to read as many messages here as I used to. So maybe this has been answered. Is there a way we can get any of these doctors removed?
You can also try a Google Site Search
Separate names with a comma.