Whether you have CFS, ME, CFS/ME, or CFID you now have increased validity as someone with an actual physical disease: SEID (Systemic Exertion Intolerance Disease). The Institute of Medicine (IOM) recently announced recommendations for naming and diagnosing CFS/ME, resulting from their $1 million study for a US government agency.
People with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), also called CFID (Chronic Fatigue Immune Dysfunction), know the CFS name trivializes a profoundly debilitating state of prolonged, significant illness. But, as of 10 Feb 2015 that changed and psychosomatic imaginary illness is set aside. The controversy, however, rages on with new fuel added.
Details of the name change and other decisions, how it occurred, why it is important, how to use the information, potential for official adoption of these guidelines, and reactions of researchers, doctors, and patients are the subject of this diary. The conflation of CFS and ME is controversial and is represented near the end with links to commentaries. Following this are links to more information and online articles/blogs discussing the recent IOM decision.
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Although I have a stake in this decision, I'm not for or against these recommendations. I understand the struggle to survive and enjoy life despite exhaustion, pain, uncertainty, and brainfog. Added suffering comes from mockery, doubt, and helpful advice such as "get more exercise; you get what you attract, just be happy; and you're lucky to stay home all day."
Because I'm a member of the chronic neuroimmune disease online community, seconds after the public announcement joy and anger swarmed into my forums and Facebook feed. Screams of "finally, a disease" and "what a waste of money when we're dying" bracket the reaction extremes and I can relate to the full range.
I'm letting others speak, those with expertise as scientists and as sufferers. It gets messy, complex, and verbose. That's the nature of committee medicine, government bureaucracy, and near instant publication of anyone's blog. One part of the outrage from patients is unusual: the belief that patients have the right to name their illness. We've been marginalized, maligned, and encouraged to take damaging treatments for so long that a large percent of the patient population feels invested in retaining the name ME, or finding a name that completely avoids the whole fatigue issue. The IOM, however, determined that fatigue (exertion intolerance) is the most common symptom uniting patients. This goes beyond fatigue, as is discussed below.
Because some readers also have brainfog, I've structured this in sections (with bold subtitles) that can stand alone. You can read, rest, then return for more. Some bold key words/phrases in text and block quotes can help readers find specific details. I've included many links, but none about the history of this issue and the realities of patients. That's a ten volume book and the resources linked in this diary will lead you to those volumes.
The suggested new name, Systemic Exertion Intolerance Disease (SEID) was announced on 10 Feb 2015 following an 18-month long committee review conducted by the non-governmental Institute of Medicine (IOM). The review was funded by a one million dollar contract from the US Department of Health and Human Services (HHS). The IOM is the health branch of the National Academy of Sciences and does not have any direct ability to establish policy. Thus, the committee findings will not be official until the HHS authorizes them. However, the IOM was contracted specifically to make these decisions and recommendations.
Committee findings
A Washington Post article summarizes the decision.
Chronic fatigue syndrome is a "serious, debilitating" condition with a cluster of clear physical symptoms — not a psychological illness — a panel of experts reported Tuesday as it called for more research into a disease that may affect as many as 2.5 million Americans.
"We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy," said Ellen Wright Clayton, a professor of pediatrics and law at Vanderbilt University, who chaired the committee of the Institute of Medicine, the health arm of the National Academy of Sciences.
Although the cause of the disorder is still unknown, the panel established three critical symptoms for the condition (also known as myalgic encephalomyelitis):
A sharp reduction in the ability to engage in pre-illness activity levels that lasts for more than six months and is accompanied by deep fatigue that only recently developed.
Worsening of symptoms after any type of exertion, including "physical, cognitive or emotional stress."
Sleep that doesn't refresh the sufferer.
In addition, the committee said, true chronic fatigue syndrome also includes either cognitive impairment or the inability to remain upright with symptoms that improve when the person with the condition lies down, known as "orthostatic intolerance."
IOM's summary of the report explains why a new name was created.
Many ME/CFS patients believe that the term "chronic fatigue syndrome" perpetuates misunderstanding of the illness and dismissive attitudes from health care providers and the public. The committee agrees that this term does not serve ME/CFS patients well. Furthermore, the committee concludes that the term "myalgic encephalomyelitis" is inappropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in ME/CFS patients, and myalgia (muscle pain) is not a core symptom of the disease.
To replace ME/CFS, the committee proposes the name systemic exertion intolerance disease, or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort— physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives. The committee believes systemic exertion intolerance disease appropriately captures the complexity and severity of the illness. Therefore, it recommends that patients who meet the proposed diagnostic criteria, whether or not they have already been diagnosed with ME/CFS, should henceforth be diagnosed with SEID.
Study Objectives
CFS Treatment blog explains how the study process was established (and evaluates the value and suitability of the report findings).
The IOM is an independent nonprofit organization founded in 1970. As health arm of the National Academy of Sciences, it works outside of the federal government to provide "unbiased and authoritative advice" to decision makers and the public. (Snip)
In 2013, HHS contracted the IOM to evaluate the current criteria for diagnosis of ME/CFS and recommend clinical diagnostic criteria that would "address the needs of health care providers, patients, and their caregivers."
Specifically, the committee was asked to:
• conduct a study to identify the evidence for various clinical diagnostic criteria for ME/CFS using a process with input from stakeholders, including practicing clinicians and patients;
• develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;
• recommend whether new terminology for ME/CFS should be adopted; and
• develop an outreach strategy for disseminating the new criteria nationwide to health professionals.
The committee was also asked to distinguish among disease subgroups, develop a plan for updating the new criteria, and make recommendations for the plan’s implementation.
Further findings and resources
More than a new name and diagnostic criteria result from the IOM's decisions. The report defined CFS/ME/SEID (hereafter referred to as SEID for convenience) as a disease, estimated that 836,000 to 2.5 million Americans suffer with SEID, and highlighted the importance of significantly more research. The full IOM report goes into much detail about who worked on the study, what information was reviewed, and how the results were decided. Also at the IOM website link are a video explaining the findings and links to summaries and the two PDF handouts discussed in the next two paragraphs.
People who have SEID, whether diagnosed or not, now have a one page PDF handout of the IOM decisions to print and take to their medical teams. Doctors who sneer about "Yuppie flu" and dismiss patients by prescribing antidepressants and exercise will now be countered with scientific consensus from experts more difficult to belittle than the often anecdotal evidence of their critically ill patients.
The IOM also released in PDF a Report Guide for Clinicians that gives more information than the brief handout.
Official adoption of IOM guidelines
The Paradigm Change blog discusses options for the HHS use of these decisions.
The IOM recommendations will not automatically be adopted. It is up to the government to decide what happens.
For instance, Department of Health and Human Services (HHS) spokesperson Dr. Nancy Lee commented on the report, “We are committed to working with our Federal partners, stakeholders, and experts in the field, as well as with the HHS Chronic Fatigue Syndrome Advisory Committee, to review the report’s recommendations and appropriate next steps.”
Public reactions
Cort Johnson, a prominent patient and advocate, wrote on his blog, Health Rising:
SEID says what it is – there are no mysteries involved. Any doctor should immediately understand the prime characteristic of the disease – an inability to exert oneself – and refrain from pushing patients too hard, simply by hearing it. Telling them to go exercise themselves out of this illness should disappear. That would help an awful lot of people. (Snip)
The Committee putting the report together contained many well known ME/CFS experts including Ronald Davis of the End ME/CFS Project and Stanford, exercise physiologist Betsy Keller of Ithaca College, ME/CFS practitioners such as Lucinda Bateman, Nancy Klimas, Martin Lerner, Benjamin Natelson and Peter Rowe and patient advocate and former MD, Lily Chu. Ellen Wright Clayton of Vanderbilt University chaired the committee and spoke at the presentation.
Six other members from Harvard, University of Miami, Columbia University and others made up the committee. A marketing consultant was involved as well. Reviewers of the report included many well known ME/CFS experts as well.
Reactions to the IOM report include relief, validation, suspicion, anger and intense outrage. Media attention and stakeholder reactions to the report are attracting much attention, with criticism coalescing around particular points.
Being diagnosed with SEID requires symptoms of six month duration, ignores neurological symptoms other than OI, and still centers on "being tired," ignoring biochemical and physiological findings generally consistent with SEID.
The use of "exertion" is decried because disbelieving friends and family won't see a phone conversation as exertion. Sitting upright or eating lunch isn't exertion. Running two miles in knee deep snow is exertion. Yet, to SEID patients talking on the phone, minor social activities, even lifting your head from the bed pillow might be exertion and cause post-exertion malaise (PEM), which patients call "crashing." For SEID patients, eating lunch can be more exertion with consequences more severe and long lasting than a healthy person running through knee deep snow.
Pain is not included as part of the diagnosis, although most patients report pain, sometimes intense and unmanageable.
CFSTREATMENT blog elaborates on these criticisms.
The IOM report sends mixed messages to medical professionals. On the one hand, it states that ME/CFS is a "serious, complex" disease. But on the other, it presents diagnostic criteria that are oversimplified, giving the impression that this is not a serious, much less potentially fatal, illness. Of the two messages, the second will have the greater weight. (Snip)
Nevertheless, six months of "fatigue" is still required, which will miss all the sudden onset cases. This is problematic, because the initial "acute" phase of the disease is what is most puzzling to physicians. Patients who come to their doctors horribly ill several weeks after a "flu" are taken seriously, because the acute phase is quite dramatic. This is the phase in which test results (including ECGs and CBCs) are often abnormal, and in which physicians write prescriptions for numerous medications, none of which help and and many of which harm patients. A case definition for a disease that can develop with such speed and severity should include a provision for sudden onset. (Snip)
And because chronicity is established after six months, it is likely that physicians will dismiss patients with long-term fatigue in the absence of measurable signs, or combined with non-specific symptoms, as having psychological disorders. (Snip)
...PEM will inevitably be interpreted as "exercise intolerance" by physicians. Exercise intolerance is a term that physicians understand, as it is commonly used in association with cardiopulmonary illnesses. Physicians may also interpret PEM as "avoidance of exercise," which, when combined with fatigue, sleep disorder, and cognitive problems (the result of lack of sleep) will lead them to think that a patient presenting these symptoms needs therapy or antidepressants. (Snip)
The IOM included cognitive impairment as an optional symptom, even though "Impairments in cognitive functioning are one of the most frequently reported symptoms of ME/CFS" (p 96). Why cognitive impairment is optional is not clear, as it is one of the cardinal symptoms of ME/CFS.
Orthostatic intolerance was also included as an optional symptom, which is also puzzling. OI is usually included under autonomic dysregulation, which can also include other symptoms, such as migraine, temperature and blood pressure fluctuations, and other manifestations of autonomic dysfunction, all of which are found in patients with ME/CFS. There is also a tremendous overlap in symptoms between POTS (postural orthostatic tachycardia syndrome - the most common form of dysautonomia), and ME/CFS. (Snip)
Rejecting pain because it is non-specific ignores the fact that fatigue, exertion intolerance, sleep disorder, and the two optional symptoms are also not specific to ME/CFS. It also exhibits a failure to understand the basic physiology of pain. All pain is processed via the same neurological pathways, regardless of whether it is experienced by healthy people, or by people who are ill. Pain is a universal, and completely subjective, indicator that something is wrong in the body. The fact that so many people with ME/CFS experience pain cannot, and should not, be overlooked. To those who cannot escape it, the constant intractable pain of ME is an unbearable symptom, and can lead to addiction to painkillers, and, in some cases, suicide. Failing to include it as a significant feature of the illness basically relegates pain to "it's all in your head". . .
Dr. Leonard A. Jason, a professor of clinical and community psychology at DePaul University and a SEID researcher, discusses one reason for patient anger in the Oxford University blog.
The Institute of Medicine is one of our nation’s most prestigious organizations, and the IOM panel members included some of the premier researchers and clinicians in the myalgic encephalomyelitis and chronic fatigue syndrome arenas, many of whom are my friends and colleagues. Their review of the literature was overall comprehensive; their conclusions were well justified regarding the seriousness of the illness, identification of fundamental symptoms, and recommendations for the need for more funding. But these important contributions might be tarnished by patient reactions to the name change. The IOM solicited opinions from many patients as well as scientists, and I was invited to address the IOM in the spring regarding case definition issues. However, their process in making critical decisions was secretive, and whereas for most IOM initiatives this is understandable in order to be fair and unbiased in deliberations, in this area — due to patients being historically excluded and disempowered — there was a need for a more transparent, interactive, and open process.
Dr. Lucinda Bateman
responded to Dr. Jason's OUD Blog. Dr. Bateman, a member of the IOM committee, serves on the boards of the International Association of Chronic Fatigue Syndrome and the CFIDS Association of America.
Now that I am intimately familiar with the IOM process, I respect the process, 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, publically 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. (Snip)
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.
Disputes over the conflation of CFS and ME
Other, overarching criticisms of IOM's decisions center on the existing diagnostic criteria for ME, and whether ME, CFS and now SEID deserve to be lumped into one definition. The term ME has been more commonly used in Canada and Europe, although defense of ME as a distinct illness and valid name also comes from the US. Representative views include the following.
The Hummingbird Foundation for M.E.
M.E. is not the same thing as 'CFS,' 'ME/CFS' or fatigue
M.E. is not medically unexplained, vague, fatigue-based or untestable
A diagnosis of 'CFS' is always a misdiagnosis
'CFS' is a bogus disease category created for the benefit of vested interest groups
Everyone diagnosed with 'CFS' deserves a correct diagnosis finally - whether the disease they have is M.E. or, as is far more likely, something else entirely
One patient's response is heartfelt, intended to be spoken, and available online as a Google document.
Documenting M.E.
Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means "muscle pain and inflammation of the brain and spinal cord." It's a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.
Additional information sources
This diary can only highlight the main aspects of IOM's extensive work. The committee examined over 9,000 studies gleaned from a larger literature search going back to 1950, and over 1,000 patient testimonies and articles. Reactions from patients, doctors and researchers to the report fall along a spectrum from relieved satisfaction to hostile rejection.
The links below and previous links offer starting points for exploring these details and forming your own opinions of this report.
The IOM PowerPoint summary of the Committee Members, Review Process, and Report Highlights is available as a PDF at the main IOM report website.
In Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the committee proposes clear and concise diagnostic criteria that will facilitate diagnosis and care for the patients affected by this often-debilitating disease. Broad dissemination and use of these criteria is essential to improve understanding of the disease among health care providers and the public and provide a firm foundation for future improvements in diagnosis and treatment of these patients.
AAAS Science Insider article
After reviewing more than 9000 scientific studies, hearing testimony from experts, and soliciting input from the public, the committee concluded that "the name 'chronic fatigue syndrome' has done a disservice to many patients," calling it "stigmatizing and trivializing." Myalgic encephalomyelitis (ME), they noted, "does not accurately describe the major features of the disease."
Solve ME/CFS Initiative
We took a huge leap forward this week in defining, legitimizing and ultimately finding a cure for ME/CFS. On Tuesday, the Institute of Medicine issued a forceful report that sharpened and simplified the illness' diagnostic criteria, legitimized it as physical, not psychological. . . . The IOM committee that conducted the study over an 18-month period also stressed in its report that more research was urgently needed.
M.E. Association (U.K.)
Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. "Boy, did we struggle with that," he said. "It's hard to come up with a good name, and I don't think this is a perfect name."
Occupy CFS
Since the IOM report came out, the patient/advocate online community has been on fire. Everyone is staking out a position. You like the name, or you don't; you think the definition will work, or it won't. And I have plenty to say about these issues, too. But what I don't hear people asking is: what is HHS going to do with this IOM report?
On Point WBUR Podcast discussing the IOM findings.
Guests:
Dr. Ellen Wright Clayton, professor of pediatrics and professor of law at Vanderbilt
University. (Co-founder of the Center for Biomedical Ethics and Society at
Vanderbilt.)
Dr. Derek Enlander, director of the Mount Sinai ME / CFS Center.
Dr. Daniel Neides, medical director for the Wellness Institute at the Cleveland Clinic.
Jennifer Brea, director of "Canary in a Coal Mine" and a ME/ CFS patient.
Cort Johnson, at his
Health Rising blog, wrote again about the name change, a week after the IOM announcement after reading other responses.
The name was certainly controversial but a significant portion of readers did not object. In a poll attracting about 750 people, a solid majority (43-29%) felt it was preferable to "ME/CFS". Fifty percent felt the name would at least moderately help their doctors to better understand their illness.
Still, little evidence that name was well-liked could be found with 75% stating it had either a moderate or high "cringe factor" and a significant subset of patients were absolutely opposed to it.
ACKNOWLEDGEMENTS
Thanks are owed to the excellent published articles from the SEID community, and for the encouragement and technical assistance of KosAbility admins and of New Diarists group admin/editor belinda ridgewood, who carried me through the drafting process and was my first reader.