IOM Report Released – Recommends New Diagnostic Criteria, Calls for More Research, and Proposes New Disease Name

IOM_ReportCoverToday, the Institute of Medicine released its much anticipated report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Redefining an Illness”.
The report put forth four key recommendations:

  1. HHS should develop a toolkit appropriate for screening and diagnosing patients with ME/CFS in a wide array of clinical settings in which these patients are encountered…

–  The committee put forth new diagnostic criteria that is far less complicated and more readily deployed in the clinical setting. A simpler criteria will lead to better, faster diagnosis. The new criteria is based on 4 of 5 core symptoms, requiring:

    • A substantial reduction in activity
      • More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
    • Post exertional malaise
    • Unrefreshing sleep
    • Either cognitive impairment or orthostatic intolerance

– These criteria build on existing ones, especially the Canadian Consensus Criteria (CCC), and also took into account the 10 years of research since the CCC was drafted.

  1. Physicians should diagnose ME/CFS if diagnostic criteria are met, following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia” (emotional disturbance)…

–  The committee clearly called for the removal of the exclusionary rule; existing criteria specify that if fibromyalgia, Lyme disease or a host of other known co-morbid conditions are diagnosed, then ME/CFS cannot be diagnosed. Comorbid diseases frequently occur and the committee stated that it is incumbent upon the physician to make the ME/CFS diagnosis as well.

–  In the past, the exclusionary rule for ME/CFS diagnosis has slowed research progress. This new recommendation should improve research effectiveness and progress in the future.

  1. The disease be renamed “systemic exertion intolerance disease” (SEID), noting that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used.

–  The new name is intended to emphasize that this is a serious, complex systemic disease that frequently and dramatically impacts the lives of affected individuals

  1. Within 5 years, the diagnostic criteria set forth in this report should be re-examined when firm evidence supports modification to improve identification and care of patients

–  The IOM realizes this is a learning process and there is much more to be done. It was explicitly stated that “we have made breathtakingly clear with HHS and others, the need for more research

In the report the committee underscored the profound impact that ME/CFS has on the millions who suffer from it worldwide (est. 17 million) and the importance of getting people diagnosed. They estimate that more than 90% may not be diagnosed. ME/CFS costs the US economy between $17 to $24 billion annually in lost productivity and medical costs. Federal spending is woefully disproportionate (a mere $5 million annually) despite significant disease burden and costs. The goal of this report is to make ME/CFS – or SEID – more readily diagnosable and it issues a strong call for clinicians to take it seriously.

Already, in today’s Journal of the American Medical Association (JAMA), there is an important article about the new diagnostic criteria for ME/CFS, put forth in today’s IOM Report. JAMA is the most widely circulated medical journal in the world, with more than 325,000 print recipients and more than 14 million visits to the journal’s website annually.

The Solve ME/CFS Initiative thanks the volunteer members of the IOM committee, the sponsors of the project (HHS, AHRQ, CDC, FDA, NIH, and SSA), project participants and staff, and – most importantly – the patient community and advocates for their heroic efforts to ensure the best possible outcome. At first glance we are pleased with the committee’s recognition of the impact that ME/CFS has on the lives of millions, while recognizing there is still much to be done.

The Solve ME/CFS Initiative is committed to working with patients, researchers, federal agencies and experts in the field, to review the report’s recommendations and ensure appropriate next steps. We see this report as a critical step forward, providing the foundation for greater action to diagnose and treat patients and advance research. This opportunity must be seized. The patients, who for too long have received inadequate care and attention, deserve better.


Access the full IOM Report, Presentation and Diagnostic Algorithm HERE

Tags: , , , , , , , , , , , , , , , , February 10, 2015
  • Kathryn Puckett

    Hooray for Solve MECFS and NBC. I thought the segment was concise and credible and covered multi bases well. I hope all the people I know saw it. One called to alert me. Sure could ease the endless explanation task.The new criteria nail the symptoms from my 22 years experience. From a CFS,ME,now SEID veteran of the DISEASE. .

  • Ramón G Castañeda

    A valuable step in the right direction: that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used.
    Not sure the suggested or proposed new name is much better or accurate, though. 🙁

  • Karin Landsberg

    Always good to see serious attention given to CFS. I’m not sure the new name is any better. Seems to emphasize the post-exertional fatigue element, potentially to the detriment of other symptoms.

  • Camilla Cracchiolo, RN

    Woah! This is way better than I hoped for.

    • r m , MD

      Then hope at much higher standards… We have the scientific technology AND clinical/research methods to accelerate emergently on this unfortunately, and maybe cynically, I think the psych stigma linked to the most affected “psychosomatic illness populations” (mid/F) created initial hypothetical eye rolling and inertia Until it’s lab specifiable it won’t be rewarding nor pharma treatable. just inertia toward making this diagnosis by most providers who lack sufficient education on the disease to take it seriously enough to diagnose it CONFIDENTLY But it was just this same uphill for depression & many autoimmunities (IBS is a good example) I am a young MD affected by this disease

      • katspan

        Please see my reply above to clvrgrl777.

  • notfamous

    Thanks to all that made this report a reality.

  • loispix

    We suffer from exercise intolerance? What about brain dysfunction? Inflammation? POTS? Sensory overload? Pain? Immune dysfunction? Inflammation? Spinal cord pressure? Autonomic nervous system dysfunction? Irritable bowel syndrome? Pain? Flu? Neuropathy? Nausea? Joint pain? Migraines? Insomnia? Chest pains? Seems to me that SEID has focused on only 1 problem.

    We now have another 1 dimensional name for a very complicated disease.

    Anyone for Myalgic encephalomyelitis?

    • clvrgrl777 .

      I so agree with you. I thought ME was perfect too with a little explanation. This INVISIBLE disease cannot sufficiently be described, so my preference is not for changing the name, but instead removing the stigma of it being a psychological problem and educating the medical field accordingly. All the best to you.

      • Kona Rose

        ME used to be the closest explanation for the symptoms we are suffering. However, the biggest problem proving we had it is there is no scientific test to prove we have or ever had brain inflammation. SEID is a much more accurate description of all the body systems drastically affected if we participate in any mental, emotional or physical exertion. Everything crashes and we never feel well at all, ever. See my post above.

    • Sam1427

      Is there any evidence of encephalomyelitis? Also, the description of “ME” is too easy to make fun of and that’s the last thing we need.

      • Kona Rose

        Inflammation of the brain is only evident as it is happening (high fever, high antibodies, radiology evidence, spinal fluid abnormalities, neuro symptoms) — not years later unless they can identify a specific enzyme or protein leftover after the damage is done, in the cerebral spinal fluid via lumbar puncture. Personally I find our dreaded disease has symptoms very similar to those suffering from Multiple Sclerosis although we seldom if ever display plaques in the brain or cord. But if you look up those symptoms, you may find yourself nodding your head in disbelief.

    • Kona Rose

      “Systemic” involves EVERY single body system in our bodies: neuro, gastro, cardiac, respiratory, urinary, vascular, reproductive, glandular, etc etc etc. EVERY system in our body is affected if exert ourselves in ANY way – mentally, emotionally, or physically – anything we do throws our entire body into chaos and it is very difficult or impossible to return to a complete state of homeostasis.

  • clvrgrl777 .

    Thank goodness something is being done. Just three months ago my new primary care physician said, “don’t talk to me about your fibromyalgia and chronic fatigue.” Needless to say he is no longer my PCP and I filed a formal complaint. It was a bizarre experience, and if I had not been diagnosed by an expert in the ME field I would have just taken that inconsideration as par for the course. I am grateful for this initiative.

    • katspan

      Early on when I would vascilate between crushing fatigue and what I thought were panic attacks or heart problems- I went to the hospital one night due to my heart racing and the inability to take innenough oxygen and such fatigue that I couldn’t open my eyes (bright lights), talk, or stand up.
      The ER physician said he (nor any other doctor in our Mississippi city) would ever treat me unless I agreed to be admitted to a Mental Health facility. They kept me for 2 1/2 weeks. I couldn’t see or talk to my family. There were NO counseling sessions or appointments, and they charged my insurance over $640,000 and charged us $66,000. It took 14 years to pay that off.
      The diagnosis was “fatigue and anxiety due to depression ”
      17 years later~ and I’m completely bedridden. I don’t see any doctors for fear of what happened to me at the ER. I think my time left is very short as I no longer have the energy to chew food. This message has been transcribed by my nurse.

  • Kona Rose

    This information must be REQUIRED CMEs for ALL HEALTHCARE workers in every country. Why? We ALL need to be united in the description of symptoms, believing it truly exists, removing bias, judgments and prejudice towards those suffering, and TREAT the symptoms until a definitive test is created or a cure is found!!!!!! TREAT (Trust-Respect-Educate-Act-Truth) us, don’t dismiss or psych label us anymore!

    • loispix

      it would be lovely to have a simple name that everybody understood the serious nature of the disease. But while everybody is talking about the name where are the treatments? I was told the deciding negative vote on Ampligen was from a doctor because there wasn’t any diagnostic test. Will S.E.I.D. definition work? Over 15 years slowly sliding down the hill
      to decrepitude. I want a life

      • Kona Rose

        I’m not sure if we will get an answer in the near future. How I wish, but unless some very brilliant scientists either get this horrid disease, or their loved ones get this, I’m afraid we will just have quite a long wait. There is little money in funding research, nor big Pharma interested unless they can bill and get paid for approved drugs. It takes about 11 years for a new drug to be approved and available on the market. So, I hate to be negative, but after 8 years of bedrest, and realizing the mountain of enormous work ahead by those who are still well and care enough to help us, it will be up a very steep hill all the way. Continue to post awareness links on social media so more and more people who are affected realize the new name change. All of must stop using the terms of ME and CFS, neither of which are accurate for the majority of sufferers. CFS is not even a disease – just a symptom and gets no respect. ME is only for those who can prove they had an initial insult of brain inflammation, then very ill after that.

        • r m , MD

          Wow read this just after I posted very similar comment Much agreed