IOM in Control
Once the statement of task and budget are finalized, the committee works independently to come to consensus on the questions raised.
Up to now the DHHS has been in charge. Now it was the IOM’s turn in spotlight.
Once the statement of task and budget are finalized, the committee works independently to come to consensus on the questions raised.
The IOM’s website makes it clear that once the contract is signed, the IOM is in complete control of the process. If the IOM’s goal is to be viewed as that of an independent and objective player, it only makes sense that it retain full control over the process. By the time the ME/CFS community learned of the contract, it was already past time to elicit changes to it.
The IOM, of course, knows of the protests and has met with advocates as well. Now that the ball is in their court, we finally got a chance to see them in operation as they released a ‘provisional’ list of the 15 panel members that will create the new ME/CFS definition for doctors.
The list can be changed. The IOM’s statement on this list is
Please note that the appointments made to this committee are provisional, and changes may be made. No appointment shall be considered final until we have evaluated relevant information bearing on the committee’s composition and balance.
The list may not please those who want the panel composed only of ME/CFS experts, and it does contain a couple of head-twisters (an expert on the effects of ethnicity on mental illness?), but it also contains a very strong core of ME/CFS experts and several of the non ME/CFS experts had backgrounds in areas like creating diagnosis, creating clinical guidelines, and symptom assessment.
ME/CFS experts made up a majority (8-7) of the panel.
Strong Core ME/CFS Panel
The panel includes a strong core of eight ME/CFS experts including five physicians
The IOM did not rely on conservative figures to fill the ME/CFS experts role. The panel does include middle of the road figures (Dr. Natelson, Dr. Bateman), but it also includes Dr. Lerner, a physician and researcher focused on viruses, Dr. Lily Chu, an MD with ME/CFS who has not been shy about sharing her thoughts about the shoddy treatment chronic fatigue syndrome has received, a sometimes outspoken advocate Dr. Nancy Klimas (“I would rather have AIDS than ME/CFS”), Dr. Ronald Davis who has an son ill with ME/CFS, and finally, and most surprisingly, Dr. Betsy Keller, an exercise physiologist whose work provides physiological proof for the existence of post-exertional malaise.
No ME/CFS experts focusing on behavioral approach to this illness were included. Some of the panel members including Dr. Klimas, Dr. Bateman, Dr. Natelson and Dr. Chu, are articulate individuals willing to take a stand when necessary. Several have engaged in collaborative processes in the past and are presumably comfortable working in this kind of environment.
CCC/ICC, Experts Letter Signers
Four of the eight ME/CFS experts had co-authored either the Canadian Consensus Criteria (Klimas, Lerner), the International Consensus Criteria (Klimas, Bateman), or the Experts letter protesting the IOM contract (Chu, Klimas, Lerner.)
The fact that three of the panel members signed the Experts letter protesting the IOM contract means the IOM was willing to include a large block of critics, and the experts were willing to put aside their objections and proceed.
Physician Core
The core of ME/CFS physicians (Bateman, Klimas, Lerner, Natelson) each of whom has treated ME/CFS for decades and one of whom had ME/CFS (Lerner) and one M.D. who has ME/CFS (Chu), will, no doubt, receive special notice as the panel works on creating a clinical description of ME/CFS.
(The one missing figure for me, and he’s only missing because once again he has not been included on an ‘experts panel’, is Dr. Peterson. When is our foremost expert on treating immune and pathogen mediated ME/CFS patients going to get his say?)
Dr. Lucinda Bateman, Fatigue Consultation Clinic
Dr. Bateman started her ME/CFS/FM practice after her sister became ill with ME/CFS
Dr. Bateman is regarded as one of the premier diagnosticians in the field. Her sister’s struggles with chronic fatigue syndrome prompted Dr. Bateman to open the Fatigue Consultation Clinic devoted to the care of ME/CFS and FM patients in 2000. Dr. Bateman has served on the board of directors of the CAA, the IACFS/ME, and the CFSAC. Dr. Bateman co-authored the International Consensus Criteria for ME.
Dr. Lily Chu, International Association of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME)
Lily Chu, M.D., M.S., is a board member of the International Association for CFS/ME and Stanford University’s ME/CFS Initiative. She was a panel member at the FDA Stakeholders Meeting. She signed the Experts letter protesting the IOM contract. She is a well-known ME/CFS advocate.
Dr. Ronald W. Davis, Stanford University School of Medicine
A world leader in the genomics field, Dr. Ronald Davis, Ph.D., directs the Stanford Genome Technology Center. This is a large laboratory focused on developing novel technologies in the medical field. Dr. Davis has authored hundreds of papers and recently received the prestigious Gruber Award. He’s a board member of the Open Medicine Institute, is currently engaged in a genetic study of ME/CFS, and has a son with a severe case of ME/CFS.
Dr. Betsy Keller Ph.D., Ithaca College
Dr. Betsy Keller can prove PEM has physiological roots.
Dr. Betsy Keller has been doing repeat exercise tests for disability assessments for chronic fatigue syndrome patients for the past ten years. She will obviously be a strong proponent for ensuring that post-exertional malaise plays a major role in the new diagnostic criteria, and she can back that claim up with study evidence. (A paper is in the works.) Check out an interview with Dr. Keller here.
Dr. Klimas has done just about everything there is todo in the ME/CFS field
Dr. Nancy Klimas, Nova Southeastern University
Dr. Nancy Klimas is… well… Dr. Nancy Klimas. Physician, researcher, and advocate, Dr. Klimas has filled just about every role possible in the ME/CFS universe. An immunologist, Dr. Klimas now directs Nova Southeastern’s Institute for Neuro-Immune Medicine, which conducts research into and provides for people with chronic fatigue syndrome and Gulf War Illness. Check out more on Dr. Klimas here.
Dr. A. Martin Lerner, Oakland University
A professor of infectious disorders and a past director of a clinical virology laboratory, Dr. Martin came down with and successfully resolved his case of chronic fatigue syndrome several decades ago. Since then he treated many people with ME/CFS, and has published several studies suggesting antiviral treatments can be effective.
A neurologist with a long history in ME/CFS, Dr. Natelson runs the Pain and Fatigue Center in New York.
Dr. Benjamin Natelson, Beth Israel Medical Center, New York
A neurologist, Dr. Natelson ran one of three federally funded CFS research centers for almost a decade. He has authored several books on chronic fatigue syndrome. One of his current research projects seeks to validate 10 years of findings suggesting that ME/CFS patients without depression exhibit distinct neurological markers compared to ME/CFS patients with depression. He currently directs the Pain and Fatigue Center in New York. His wife, Gudrun Lange, a neuropsychologist, also treats and researches chronic fatigue syndrome. He has co-authored over 250 papers.
Dr. Peter Rowe, Johns Hopkins Medical Institutions
A physician and researcher, Peter Rowe, M.D., was one of the first researchers to uncover the presence of orthostatic intolerance in chronic fatigue syndrome. Another well-published author, his recent paper proposes that ‘neuromuscular strain‘ both sensitizes the central nervous system and affects cognition in ME/CFS/FM. Dr. Rowe has directed the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center since 1996.
Non ME/CFS Experts
Experience in their chosen fields marks most of the non ME/CFS experts on the panel. Most are well published and some are leaders in their field.
Dr. Ellen W. Clayton (Chair) – Vanderbilt University
The Chair, Dr. Ellen Clayton, has published two books and over 100 journal articles and is described as an internationally respected leader in the field of law and genetics. She co-founded the Center for Biomedical Ethics and Society. She appears to be on the committee because she’s had experience chairing IOM committees (five of them, thus far).
Dr. Margarita Alegria – Harvard Medical School
A well published author with over 10 citations in 2013 alone, Dr. Margarita Alegria’s work has focused mostly on the intersection between race and mental illness including the disparity in mental health expenditures between ethnic groups as well as how prevalent mental illnesses are in different ethnic groups. She is a full professor at Harvard Medical School. Her focus on underserved groups perhaps has some resonance with ME/CFS, but it’s not otherwise clear why she’s on this panel.
Guideline Support – Panelists Presumably Added Because of Their Experience in Producing Guidelines, etc.
Dr. Charles S. Cleeland – M.D. Anderson Cancer Center The University of Texas
Another well published researcher, Dr. Cleeland has focused on the symptom burden present pre- and post-cancer. He is part of a group asserting cancer patients symptoms should be charted more carefully and taken into account when assessing treatment effectiveness. A 2011 Cleeland study concluded that more than 1 in 4 cancer survivors had severe symptoms even after successful treatment for cancer. His focus on assessing the degree of pain, fatigue, and other symptoms in cancer and post-cancer fatigue would seem to make him an excellent ‘outside’ choice for the panel. His other research interests include the effects of pain on brain activity.
Dr. Theodore G. Ganiats, M.D., University of California, San Diego
Dr. Ganiats has been involved in the development of clinical guidelines for numerous disorders (the IOM says over 50) and has published on a wide variety of subjects. He’s currently the executive director of the UCSD Health Services Research Center.
Dr. Cynthia D. Mulrow
Two of Dr. Mulrow’s papers include Diagnostic Test Accuracy and Clinical Decision Making and Trustworthy clinical guidelines. Mulrow also collaborated on two 2001 efforts to summarize research evidence regarding case definitions, prevalence, natural history, and treatments in chronic fatigue syndrome. She has been director of the San Antonio Cochrane Collaboration Center and the San Antonio Evidence-based Practice Center, and is senior deputy editor of Annals of Internal Medicine and adjunct professor of medicine at the University of Texas Health Science Center at San Antonio.
Others
Betty Diamond, M.D. – The Feinstein Institute for Medical Research North Shore-LIJ Health System
A former president of the American Association of Immunology, Dr. Betty A. Diamond, M.D. has headed numerous programs, and is now the head of the Center for Autoimmune and Musculoskeletal Diseases at The Feinstein Institute. Another highly published autoimmune researcher, her research has focused on lupus in particular.
Dr. Michael L. Shelanski, Columbia University
Another well-published researcher, Dr. Shelanski’s laboratory focuses on the molecular aspects of neurological degeneration. Michael Shelanski, M.D., Ph.D., serves as chairman of the department of pathology and cell biology at Columbia University, co-director of the Taub Institute, and director of the Medical Scientist Training Program. It’s not clear why this molecular biologist is present on a panel to produce a clinical description of ME/CFS, but there he is. 🙂
The Contract
The DHHS has been so tight-lipped that it’s hard to tell what they’re thinking, but with the creation of the provisional panel it’s clear the contract is going forward, and with this panel, I would argue that it should. A good, widely disseminated clinical definition could be a huge boon to the ME/CFS community.
A good definition would reduce misdiagnoses, increase diagnostic rates, add drug companies, dispell myths, etc.
It would produce ‘widely accepted diagnostic criteria’ and replace the kind of ad hoc definition currently used (if used at all) by physicians. It should decrease the rate of misdiagnoses (mostly depression and anxiety) and increase the rate of proper diagnoses. Drug developers will gain assurance that a more or less well-defined market is there for them. (Currently it’s believed that about 20% of people with ME/CFS are diagnosed, leaving a market of 200,000 patients, not the millions that studies suggest are out there.) Emphasizing post-exertional malaise, as the definition will surely do, would de-emphasize fatigue and reduce the rate of dangerous exercise prescriptions.
It would produce a basis for diagnosis of ME/CFS that most other disorders have. Any IOM-produced definition would, we presume, immediately become widely disseminated on medical websites.
A Diagnostic Tool – Nothing More, Nothing Less
The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health care providers, patients, and caregivers.
The IOM contract is to produce a diagnostic tool in the form of a description of ME/CFS so that doctors, nurse practitioners, and other first-line healthcare providers can recognize it when they see it. The IOM is not tasked with recommending treatments for ME/CFS, nor stating what the cause of ME/CFS is, nor determining whether it’s a physical or psychological disorder, nor creating a research definition.
The IOM is tasked with producing a descriptive document that provides criteria to help physicians know ME/CFS when they see it.
I don’t think the CCC, ICC, or Pediatric definition were done in vain. They were collaborative efforts produced by experts in the field, some of whom are on this panel, which should lay the groundwork for a new definition. The contract specifically points the panel in their direction, and in the direction of the CDC’s multicenter study. That study, of course, is using patients selected by top ME/CFS practitioners. Time will tell but my guess is that the clinical definition produced will look much like the CCC and ICC definitions.
(The panel may also recommend name changes. Dr. Klimas led the way for the AACFS name change (to IACFS/ME) when she was president at that organization.)
Conclusions
The IOM created a provisional panel with a strong core of ME/CFS experts, surrounded them with several members with a background in diagnostics, clinical guidelines and symptom assessment, brought in an experienced Chair (with no link to the issues involved), and then added an immunologist and a neurologist. ME/CFS experts make up a slight majority on the panel (8-7).
It appears that the IOM’s MO was to bring in ME/CFS experts with an emphasis on treating physicians to advise them on what ME/CFS looks like and then and provided them with support in the logistics of actually creating a definition.
You can make comments and request regarding the panel here until the 23rd of December. For me, I am going to thank them for their choices of ME/CFS experts, and request that more ME/CFS experts such as Dr. Peterson be included.
Despite the DHHS’s early missteps, the IOM contract may in the end provide a real boon for doctors and patients.
Thanks for the low-down on this – it does look much better than it might have been with some strong ME/CFS people there. Did I remember you saying that the advice from the Gulf War Syndrome vets who were stiched up by a IOM illness redefinition was to make sure there were good people on the committee as the most important thing?
Thanks, Simon…
I’ve thought the panel was key. Now the ME/CFS experts, if you want to look at this way, hold the controlling votes since they’re in majority. They don’t have to convince anyone. I’m sure they won’t look at it that way – they’ll work in a collaborative manner.
For all the talk of the GWS definition, unless I have something wrong I believe that process is still underway.
I think the extraordinary letter from the experts and advocates probably had some effect, and I know some advocates have had significant discussions with the IOM focused on educating them about the ME/CFS communities needs.
Simon, I don’t know if Cort said this, but PANDORA Org said this. We spoke to GWI advocates who said they were trying to fix things afterward and told us we would likely not get the contract stopped but to get ahead of it and make sure there are enough illness experts on there. We were told they didn’t realize the makeup of the current GWI IoM committee until they were set and so they tried to fix it at the first meeting. Oh, and we were told the IoM did add a neurologist after the first meeting.
Also, I think some may forget the report is supposed to be 100% consensus. It’s not majority rule. If the majority feels one way but someone on the committee just can’t agree, he can include a dissenting opinion. But if that happens, it weakens the credibility of the majority view. So they try for 100% consensus.
Also, the report will go through an external peer review process.
Knowing that, I feel it is very unlikely the 8 ME/CFS experts would sign anything that looks like Fukuda or Oxford. The real question for me is whether the 8 experts can agree. They all see the disease from their own specialty. Interesting times.
I know PANDORA’s done a lot of work in the background actually talking to the IOM and the DHHS about the ME/CFS Communities concerns. I think it’s very important to do that. Hat’s off to them for wading in there. 🙂
Thank you for this, Cort. It eases my mind…especially after watching “Voices From The Shadows” documentary about several UK patients and the government-run healthcare that labeled them as mental patients, which led to other abuses and the death of Sophia Mizra. As our government gains more and more control over our healthcare here in the US, I have concerns the psychiatric lobby will win out. Up until now, it seems our privately-run healthcare has provided the greatest number of physicians and researchers of this disease in the world. Indeed, international patients come here for treatment. So I’m glad to know “the powers that be” are turning to ME/CFS experts for a definition. Though it is a waste of taxpayers money, given we already have a perfectly good definition with the CCC, perhaps coming from a US government entity, this one will carry some weight for our good.
Joining in on your optimism…I’m hoping and praying!
Christine
Cort – Your site is absolutely amazing! I just “retired” from 17 years of writing an FMS/CFIDS newsletter for my readers at http://www.fms-help.com. I developed fibromyalgia overnight in June of 1982 and CFIDS in 1987. I had this illness “managed” until I worked in a building filled with toxic mold and bacterial spores in 2005 http://www.fms-help.com/mold.htm. Since then, I have been unable to travel, and my stamina has been greatly reduced. I apparently have permanent neurological damage. I read your bio and see that you are from CA. I’m a UCLA grad (psychology/philosophy, 1971). I am able to work part-time (piano teacher) and am truly grateful for this. Several years ago, I asked my readers what their occupations were at the time of their FMS/CFIDS diagnosis. I am amazed at what a diverse a group we are! http://www.fms-help.com/occupations.htm. I have wondered if our illness could have been caused by a malicious virus designed to disable (but not kill) the best and brightest of the population. Our local newspaper, Florida Times Union (Jacksonville, FL), had an Associated Press article on Oct. 10, 2002 entitled “Some not informed on chemical tests.” It said that the Pentagon acknowledged secret experiments conducted in 5 states from Alaska to Florida. Thousands of civilians in Hawaii and Alaska were sprayed with a relatively mild bacteria meant to simulate germ weapons such as anthrax. This was from the Defense Department’s top official. Also, I learned that the SV40 virus contaminated the Jonas Salk polio vaccine given by sugar cube to 98 million Americans between 1955-1963. I took this vaccine on a sugar cube at my elementary school. The government knew about the contamination during the last 2 years of distribution and allowed it anyway due to pressure from the pharmaceutical company that had stockpiled the vaccine. SV40 has a 30 year incubation period and causes all kinds of cancers. It is also passed to the next generation, so I wonder if this is why there are so many childhood cancers these days? I hope that the IOM committee will be made up of those who are the most knowledgeable about our complex and debilitating condition. – Dominie
This is very positive news. I too hope that they consider Dr. Peterson for the final committee. and yes…..Thank you PANDORA for all your proactive efforts. This looks like a great group to tackle the job! If IOM would call Dr. Peterson to the table we could have a dream team, pardon my enthusiasm here, I usually don’t get excited about stuff like this.
I believe it is important for the Government to have their own definition and Point of View on the treatment for this profound illness. Especially if it would help in getting this definition and treatment out to medical community.
Again, pardon my enthusiasm…. but this is good news!
Pandora just released a letter on their work with the DHHS/IOM
“Dear ME/CFS advocates and experts,
Since the first public announcement in August that the U.S. Office of Women’s Health intended to contract with the Institute of Medicine to develop a consensus on a clinical disease definition, many confusing events have occurred. I want to let you know that I have the same fears expressed by many patients and experts. I also respect everyone’s efforts regarding the IoM, including the Stop the IoM campaign. All of us want the same outcome. We all want patients to have access to quality medical care and be treated with respect and dignity. You are very valuable to me, and I want nothing but the best for all of us.
My belief is that in order to work effectively, this issue has to be worked from many different angles. So, through all the developments, I worked to find out specifics, got experienced advice, kept our board informed, weighed all the options and looked for solutions that will improve physician understanding of ME/CFS and improve patient access to knowledgeable healthcare. I also believed it was important to keep you informed of our decisions and actions along the way.
At this time, the IoM study is moving forward with the first committee meeting possibly being in January. The IoM has selected intended committee members for the study and started gathering information and research papers for the committee to consider.
Given previous IoM study reports on Gulf War illnesses, we understand there’s a possibility that the ME/CFS IoM study results will not produce a definition for the disease that is best for patients if patient advocates and illness experts are not proactively involved in the process. But there is also the possibility that the ME/CFS definition result will be favorable, especially if patient advocates and illness experts are part of the process. This is seen in the IoM’s clinical guidelines report on epilepsy. If we can get the same positive results from the IoM has happened with epilepsy, it will be a game-changer for our disease.
The different results in IoM’s study on epilepsy and studies on Gulf War illnesses show the chances of a better definition for ME/CFS will only happen if the patient perspective is considered, the best research is included, ME/CFS expert experience is considered, and ME/CFS experts and open-minded medical profesionals are on the committee. So, we are going to stay in front of the IoM and make sure they get it right.
Toward that goal, about 17 people have decided to work together to coordinate efforts at influencing the IoM. Some are independent advocates, and some are part of other patient organizations. Some have participated in the “Stop the IoM contract” advocacy, while others have not. What we all recognize is that the stakes are too high for us to ignore that the IoM is moving forward on what will surely have a huge impact on patients.
This initiative is called “Get it Right.” Because the IoM study will be 18 months, we expect this collaboration of experts and advocates to continue during that whole time. The group is networking and assisting in each other’s efforts to not duplicate work or miss important opportunities. The individual or organization that takes the lead on a certain project has control of that project; so consensus is not required. We simply are sharing our talents and the workload.
The first task is to find out information about the selected committee members to the community can give informed comments to the IoM about these individuals before they are finally appointed. We are glad to see that five of the intended committee members are ones we nominated. Keep an eye out for an Occupy CFS report on information about the selected committee members after they are researched.
If you would like to join myself and the other patient advocates in a way that is proactive, spreads the work load and avoids duplication — whether you are a patient, part of another organization or an ME/CFS expert — please let me know by emailing me at lorikroger@pandoraorg.net.“
Very impressive effort by Pandora. I
I know Wanda stated the IOM’s work on an epilepsy definition turned out to be very helpful. Hopefully, with these advocates and others staying engaged, the same will be true here.
Obviously the panel does not look as good as I hoped it would, but it could be worse. My biggest concerns at that this committee is suppose to be in effect for 18 months. This 18 months is probably going to reveal more about this disease through various strong studies. Some I obviously don’t even know about because I haven’t seen a comprehensive list composed by anyone in awhile, but we definitely have the CFI/Lipkin study which has already has produced some interesting information, the WPI just today I received a newsletter that indicates their uncovering of plasmacytoid dendritic cells in ME/CFS patients that allows reactivation of viruses that are held in latency in a healthy individual (if this replicated produces a bombshell in my opinion) and Dr. Montoya is having a conference call for people that were in his study, which was a very large in number, in the near future to discuss some of the findings.
These are just some that I know about and would hope that the information produced in these studies will be available to the committee as I believe the CFI/Lipkin study is projected to not be completed for at least 18 months. I would hate to see them develop a definition for ME/CFS without the results from that study.
It just appears that their timing is wrong and is a waste of millions of dollars, when they could have temporarily adopted the Canadian criteria until a time when a set number of very important studies, directly related to our disease and finding diagnostic markers, have been completed.
It would be ashamed if 18 months worth of work was found to be wasted at the release of information from one study or even worse if that information was now going to be discarded due to a definition has already been established and no credibility is given to a 3 year long several million dollar study in the eyes of IOM, HHS and CDC.
It is a shame that people that are placed in such powerful positions haven’t got the sense to stop and look at what is right in front of them or even worse ignore what is right in front of them.
God bless all of us and prayers that the right thing is done.
JW, research is a continuous process – it never stops. There will never be a moment, let alone a period of 18 months, when a group could work on a case definition without some research being incomplete and not being included in the group’s work.
The only recourse is to work with what you have today and if something that drastically changes what we know comes along later, we go back and modify the case definition. If it’s something so earth-shatteringly obvious, it can be modified directly by DHHS; if it is a number of lesser matters, a new IOM or other group can be formed to revise the case definition.
There’s just never a good time to stop the world of research so everyone can focus on the case definition, though. I wouldn’t want the research to stop, either – it needs to keep driving on. I hope there are great new discoveries that will make everything that has happened before obsolete – that will be great for us all, if we can really solve the disease once and for all. Until then, we have to play the hands we’ve been dealt and deal with what we know today.
Thank you for this, Cort! And I too want to thank PANDORA and other advocates, both those advocating to stop the contract and endorse CCC and those working to make the best out of the IOM contract since it seems it will move forward in spite of all the protests.
Yes, WHY isn’t Dr Peterson on the panel?
And what about Leonard Jason?
Great job of breaking this down for us Cort. This is really encouraging news. I had to laugh when I read your comment about Dr. Klimas but I totally agree.
I am very relieved to see some of our experts making up the majority of the committee, however, I am a little nervous (even though I understand the reasoning) about this slate being “Provisional.” I’m going to follow your advice and click on the comments link to thank them for including the ME/CFS experts who have been named and send them Dr. Peterson’s name (and perhaps a couple of others) to be considered as alternates in the event any of the current experts have to be removed for some reason. We certainly haven’t been shy about voicing our displeasure all the way through this process, so it only seems appropriate that we should let them know when we think they’ve done something right!
Yes, I imagine that comments congratulating them on incorporating ME/CFS experts into the mix and stating how important it is to the community that they did that, would be helpful.
Let’s try and get Dr. Peterson in there!
Indeed, let’s.
I would like to see international experts on the panel.
That’s great news. Thanks for sharing!
This is exciting news indeed Cort. Thank you for your dedication and for such a comprehensive report.
Thank you very much Cort. I sent over a thank you and also suggested Dr Peterson. Sorry I haven’t been very active since having the pleasure of meeting you at NSU opening. Too busy trying to recuperate from surgeries, hernias, ankle fractures with plates and totally weak. Just wanted to send some hugs and sincere gratitude for all you do!
Sorry to hear about all those problems, Gina. It was good meeting you in Florida. A big hug to you and I hope you’re feeling better 🙂
“The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health care providers, patients, and caregivers.
The IOM contract is to produce a diagnostic tool in the form of a description of ME/CFS so that doctors, nurse practitioners, and other first-line healthcare providers can recognize it when they see it. The IOM is not tasked with recommending treatments for ME/CFS, nor stating what the cause of ME/CFS is, nor determining whether it’s a physical or psychological disorder, nor creating a research definition.
The IOM is tasked with producing a descriptive document that provides criteria to help physicians know ME/CFS when they see it.
I don’t think the CCC, ICC, or Pediatric definition were done in vain. They were collaborative efforts produced by experts in the field, some of whom are on this panel, which should lay the groundwork for a new definition. The contract specifically points the panel in their direction, and in the direction of the CDC’s multicenter study. That study, of course, is using patients selected by top ME/CFS practitioners. Time will tell but my guess is that the clinical definition produced will look much like the CCC and ICC definitions.”
That’s strange. I did not realize that you were privy to the contract between the IoM and HHS. HHS has refused to produce the actual IoM contract even after legal requests from patient advocates under FOIA.
How were you able to gain access to the actual contract?
Futhermore under the IoM’s Evidence-based-methodology or criteria, panel members are under severe restrictions on which scientific reseach materials and articles they will be able to access, review and discuss. Bias and conflict of interest are but shams hidden behind IoM’s doublespeak terminology coupled with their lack of transparency over the entire process is just what taxpayers want at this stage of fiscal responsibility in government.
When the ink was finally dried on the last IoM panel decision to determine illness criteria, the brave men and women of the Gulf War Veteran’s patient community were thrown under the bus. The IOM’s decision is a continuing blight on the soul of America’s conscience.
http://www.usatoday.com/story/nation/2013/06/26/veterans-institute-of-medicine-gulf-war-illness/2458745/
Ecoclimber, it’s fairly simple to intuit some of what’s in the contract from the activity description the IOM has posted on its website. While Cort might have stated what the “contract” said, he was obviously referring to what he had derived from the IOM website and other sources.
Your characterization of this IOM panel’s shortcomings and of the Gulf War IOM panel’s shortcomings are at odds with one another. I am also a Gulf War Illness sufferer and advocate as well as an ME/CFS advocate and possible sufferer. GWI veterans were concerned the first IOM group to come up with the multisymptom illness definition of GWI did not have any GWI expertise on the panel at all and did NOT use evidence-based methodology to develop their definition. For the ME/CFS committee, you’re saying the use of evidence-based methodology is now too restrictive? GWI veterans would have loved to have had even a few clinicians, researchers, or others experienced with GWI on the first group of IOM panelists and for them to have used evidence-based methodology, so I’m not sure how that is all a negative aspect of the current IOM panel for ME/CFS.
The new GWI IOM panel, contracted by the VA, to develop a new case definition for Chronic Multisymptom Illness, also does not employ an evidence-based, analytic methodology, does not include experts who have been working on GWI for years as researchers, clinicians, or stakeholders, and limits them severely in what research they can use and what criteria they can include in their process. It is nothing like the new ME/CFS IOM panel in terms of the disease-specific expertise on the panel or in the use of evidence-based methodology or the much broader scope of existing case definitions and research sources allowed into the process.
Of course, this is all only my perspective, but I have spent quite a bit of time and effort looking into both these matters. The USA Today article you linked to did not do a very good job of reporting on a complex issue, and mixed apples, oranges, and kiwis by not really having a good understanding of three different aspects of GWI goings on. The actions of DHHS and VA are almost as complex as the diseases themselves sometimes, and neither agency is exactly part of the most transparent administration in history. That seems to confound almost any effort to find out what’s really going on with any of these projects.
Just wanted to share my view of things, though.