Guest Blog: Dr. Lucinda Bateman on the Discussion Surrounding the IOM Report

Bateman-4webLucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research, an organization that began in 2001, when Dr. Bateman realized that there was a great need to provide support to those in our community who deal daily with ME/CFS and/or Fibromyalgia.

Dr. Bateman served on the Instituteof Medicine committee that produced the recent report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. In this guest blog post she weighs in on the conversation surrounding the IOM report on ME/CFS, the new diagnostic criteria and the proposed name, Systemic Exertion Intolerance Disease (SEID).

This post originally appeared on the OFFER Utah website and is reprinted here with her permission.

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The IOM accepted the controversial contract issued by DHHS (funded by NIH, CDC, FDA, and AHRQ) and worked on the project for one year in 2014. One “Charge to the Committee” was to “develop evidence-based diagnostic criteria for use by clinicians” which involved reviewing the higher quality, peer reviewed, published scientific papers in order to determine which  illness criteria are best supported by the evidence.  An additional charge was to “recommend whether new terminology for ME/CFS should be adopted.”  The committee focused intensely on the complex project, and avoided the temptation to go beyond or outside the statement of task. The contract is now complete and the report has been delivered to the sponsor.

The complete report can be accessed online at http://iom.edu/Reports/2015/ME-CFS.aspx

The newly released ME/CFS Clinicians Guide can be accessed online HERE

Now that I am intimately familiar with the IOM process, I respect it and do not expect the IOM to change what they do just because the scientific, clinical and political conundrums around ME/CFS are particularly challenging.  The IOM almost always tackles challenging tasks.  The IOM is respected in part because of its adherence to a process with high standards.  The IOM process is not a transparent, publicly interactive or open process; it is a confidential, internally interactive, collaborative and “consensus building methodology” that was an intellectual and interpersonal challenge for those entrusted with the task.

It was not within the statement of task, or “Committee Charge,” of this particular project to establish illness etiology/cause, assess risks of blood donation, determine best treatments, design or implement studies to validate or compare case definitions, or alter the content of the report based on how it might be received.

The clinical diagnostic criteria in the report are core symptoms drawn directly from the published ME/CFS literature—much of which came from Dr. L. Jason’s works and the CDC multi-site study — informed by self-reported symptoms from patients of ME/CFS specialists (Klimas, Peterson, Natelson, Levine, Lapp, Podell, Kogelnik, Komaroff and Bateman) and the SolveCFS Biobank™.  These symptoms are important ongoing aspects of ME/CFS illness – substantially reduced functional capacity and fatigue, PEM, non-restorative sleep, neurocognitive impairment and/or orthostatic intolerance/autonomic dysfunction – that physicians have previously often missed, but that they should immediately identify and assess in order to make a diagnosis and provide care.  The symptoms must be of moderate to severe intensity and consistently present over time, an important parameter supported by Dr. Jason’s research.

The report also lists other common symptoms and manifestations of this illness that are not considered “core” or specific to the illness, not as universally present in all cases of ME/CFS, are common in other chronic conditions, or are not supported strongly by the evidence.  Nevertheless these “other symptoms” are commonly present—pain, infection onset, immune impairment and neuroendocrine manifestations – and when present in patients who meet the major criteria support the diagnosis.  The report also says clearly that the evidence isn’t strong enough yet to delineate clear subgroups, at least in a report of this type and scope.

Regarding adopting new terminology, the committee decided the answer was yes. Then while still immersed in the science, the rich input from patients, and the combined experience of the group, the committee devised a name intended to send a clear message to clinicians about the profound impact of the illness.  Multisystem. Activity limiting.  Punishing.   Then an aggressive plan of dissemination was recommended to DHHS to jump-start the process of bringing sick ME/CFS/SEID patients back into the medical and scientific mainstream.

The DHHS and the other co-sponsors have received the report and recommendations of the IOM.  In distinct contrast to the IOM process, it is the responsibility of the U.S. government to engage in a transparent, publicly interactive and open process with its citizens.

The Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services), the International Association of ME/CFS (the scientific organization), and interested advocates may certainly give DHHS input about what name should be endorsed, hopefully taking the IOM recommendations into consideration.

To quote an interested bystander observing the conflicted public response to the IOM report, “Patients should leverage the report, not try to kill it.”

As for myself….I hope that US doctors start using the criteria right away and begin to identify this illness in their patients so they can provide compassionate and informed care.  I hope that scientific progress (large, controlled, well designed and funded studies) and breakthrough treatment ideas immediately follow at a breathtaking pace.  I hope we leave name change deliberations in the dust and focus on the people who are ill.  I hope we identify subgroups, create more diagnostic tests, unravel elusive disease processes, and revise the criteria based on great scientific advances within the next 3-5 years.  I hope this conversation will soon seem old and outdated.

–      Dr. Bateman, February 2015

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 In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust. This award gives SMCI the opportunity to further grow the SolveCFS BioBank™ and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan. L:earn more HERE.

In a recent 3-part blog series, Dr. Bateman offered some of her best advice on the treatment of ME/CFS, honed by her many years of caring for thousands of ME/CFS patients… Access that post series here:

 

 

Tags: , , , , , , , , , , , , , , , , February 27, 2015
  • Nita Dozer Thatcher

    Quote: “Patients should leverage the report, not try to kill it.” End of quote. I completely agree! It’s past time to put our differences behind us and work together for our common good. Let’s take this report and ram it down the throat of the DHHS!

  • Kasha Dziewisz

    My Gosh, systemic exertion intolerance disease is worse that Chronic Fatigue Syndrome. How about letting patients decide. I want it to be called ME. Period. I can hear the jibes and laughs coming from people when you tell them you have a disease that you just can’t exert yourself. It’s a foolish choice. Keep science out of the way.

    • Vikki

      I totally agree. They should be educating doctors and nurses and stop with the name already. U have gone into the hospital and when I tell nurses what I have they look at me like I am joking. Education is the key not the name.

  • Arne Youngerman

    I agree totally with Kasha; don’t know how anyone could come up with a name worse than chronic fatigue syndrome!!! If your organization stands behind this, you do NOT represent the majority of patients and do all of us such a disservice!

    • female avatar would fit

      We use ME/CFS or CFIDS. What do you call it where you are?

  • Patty Ritchie

    I have to wonder how real progress will be made. Will it be by a plodding committee such as the IOM? Or will it be by serendipitous discovery such as Rituxin in Norway which has proceeded to the formal double-blind study? I am forever grateful for those brave souls who volunteered to test a drug with such serious side-effects.

  • Janet Forsythe

    I agree as well, “let it go, let it go…”;) come on now, which of the clinicians involved in that report are suddenly going to jump on the anti Cfs/ME bandwagon and give up years of work to align themselves with what they consider inferior or destructive? IMO, im not crazy about the name, although if its anocyrom is more widely used many will forget what the letters stand for, but it d o esnt have the stigma (yet) of CFS OR ME. The resaoning behind the criteria and name make sense.

    The CFS/ME communities need to stop armchair quarterbacking. I know we have had to defend ourselves for decades but dont make our allies enemies. That is just arrogant foolishness. Really we may know more about our disease than the average MD but we do not know more than these researchers. We need to stop bickering and let the professionals that are trying to help us help us.

    • Janet Forsythe

      You are replying to a 10 month old post. Sorry but I don’t see how my original post was demeaning to you, why you apologized nor can I see your apology. Nothing was directed to you in my post. I have no idea what you are even talking about? Although to say such rude comments to a stranger isn’t very nice in my opinion

      • Janet Forsythe

        Odd. I got an email that you just posted on this thread yesterday morning.
        Look, I try to be sensitive to others feelings but I said nothing even remotely directed at you. One thing I’ve learned is I can’t control someone else. If you are determined to take a general comment that never was harsh nor hurtful nor directed at you as negative, I can’t change that. You choose that course. I mean this in all seriousness but if you have ME/CFS you need to work on not doing that. Its a waste of your energy. I wish you the best.

        If however you are a troll or just trying to stir up drama, its a waste of MY limited energy so I’m not responding anymore.

    • Janet Forsythe

      You know I want back thru your profile and according to that you only joined this conversation 9 days ago so you are incorrect about you posted statements.

      If you want to pick a fight for whatever reason, do it with someone else. And stop making personal attacks. That’s a not a very mature way to handle a situation. If you do it to me again I will report you to a moderator.

  • MR AIDAN G WALSH

    Call it what it realy is & stop the decades of complete lies a more appropriate name would be ‘internal ionisation radiation injuries’ with broken cromosones/translocations…Russian Scientists already call CFS ‘Chronic Radiation Disease’…Time to file serious lawsuits from the Private sides of laws…It is time now that the full truth comes forward & Criminal Public Enquiries be held at the Hague…All 15 patients from a cohort are now all Positives to Radionucleides they all have radiation isotopes in their urine samples…CFS M.E. Fibro Lyme Gulf War Syndrome deployed/non deployed RSD Autonomic Dysfunction Syncope POTS Mold ‘LABELS’ complete madness HHV-6a CMV Ebv LABELS Start telling people the truth this illness is no different to Chernobyl victims plus Chernobyl is only one spill not counting 3Mile Island the one also in Russia that was never told to the World plus thousands of Nuclear testings not counting the biologics/plutonium dumped in Wars on innocent victims…Continue on the path of funding phycosomatic b.s. criminal charges will go foreword we live in a World of Commerce understand Commercial laws they are arrest warrents unde UCC Laws Roman Cannon Laws jurisdiction not Admiralty b.s.

    • MR AIDAN G WALSH

      The National CFIDS Foundation has said for years it is Radiation Sickness yet we to this date are dismissed as Hypochodriacs & it has nothing to do with Xrays it has to do with Nuclear Radiation plus Military detonations & highly likely Nuclear Bio Warfare…Work has now been submitted for Publication & it all has been replicated…All the cohorts tested are Positives to Government tests some with Beta others with Gamma they are lying to everyone of us now we have Japan on our doorsteps & yes they also covered up 3 Mile Island plus Chernobyl & dropping Nuclear Warheads in Oceans & on land…Our illness is no different than Chernobyl victims who have been left to rot so have the Japanese people who all will eventually die a slow death just like us…Gulf War Illness deployed/non deployed are the same as CFS Fibro so called Lymies plus Iraqi people are also contaminated…

      • MR AIDAN G WALSH

        u r Welcome I like so many want the truth to come forward I just read this past week a former Toxicologist who also was a Professor put out a pdf file saying we have been poisoned by Antibiotics yet I do not hear any of these so called CFS Experts looking into these possibilities & we all know why they would never ever get Grant Money again if they told the truth to all of us I am starting to seriously think we need Public Inquests in Courts of Law or even better Sue from the Private sides of Laws Uniform Commercial Code Laws Roman Cannon Law …I will not Stop until the truth comes out & yes I also agree I do not want symptom relief…

    • MR AIDAN G WALSH

      Time will tell if The National CFIDS Foundation is on the right track on internal ionisation radiation injuries I do know the several Papers have been replicated by Chernobyl experts a Team from McMasters

      University have now submitted for Publication also just found out Dr Diana Driscoll has said she has found potential Treatments for Acetylcholine deficinecies she calls this ‘Acute Anticholergenic

      Syndrome all Patients fit the criteria Symptomology check lists she is reversing full recoveries in some they have produced 3 types of Natural Supplements they have been doing in House Trials with

      great results she plus her 2 children were all Sick they have now fully recovered she has gone back to work they opened a new Clinic for Patients/Research it is called POTSCARE…www.potscare.com She

      is also working with numerous Doctors Researchers now doing further Studies they are in the Texas area their website has their details plus Research links you can call to ask how to order the

      Products they are Sold in USA through Amazon.com there is a Company involved that Supplies these Products not sure full name though something ‘Nutrition’ :)’s She was interviewed recently on Histamine type site…

  • Vikki

    I have had CFIDS since 1989 and I am tired if the name changes. It means nothing but adding confusion to those who have it. People are getting diagnosed as Fibromylgia because the name is known and recognized because if a ad for Lyrica. Changing the name to SEID is just added confusion to patients, their friends, family and physicians who now have another name to memorize. When I go too a new doctor I spend 10 minutes telling them it was formally know as Epstein Barr, CFIDS, CFS, ME/CFS and now SEID give us a break

    • female avatar would fit

      More doctors are accepting, treating, finding information about Fibromyalgia, CFIDS and ME/CFS. Adding another acronym for what’s been changed at least twice is hard to keep up with, especially since the government medical employees, who improperly handled diseases, were in the process of changing all the medical coding for billing patients. Doctors are committing suicide at about the same level as their patients do. There’s too much stress on the medical profession, deductibles are too high for insurance and we barely make it with food and my medications. Let’s not make things any more complicated than they already are.