New York Times blogs, report by David Tuller, 10 February 2015.
The Institute of Medicine on Tuesday proposed a new name and new diagnostic criteria for the condition that many still call chronic fatigue syndrome.
An institute panel recommended that the illness be renamed “systemic exertion intolerance disease.” The term reflects what patients, clinicians and researchers all agree is a core symptom: a sustained depletion of energy following minimal activity, called post-exertional malaise.
The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” said Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition.
The Institute of Medicine panel was convened at the request of the Department of Health and Human Services, the Centers for Disease Control and Prevention, the Food and Drug Administration and other federal agencies.
The new recommendations are not binding, but they are likely to influence diagnosis and treatment of the disease.
An alternate name for the illness, myalgic encephalomyelitis, meaning “brain and spinal cord inflammation with muscle pain,” was coined decades ago. Many experts now refer to the condition as M.E./C.F.S.
About one million people in the United States are believed to have the syndrome. Many say they have been accused of imagining or exaggerating their symptoms, and many doctors have long viewed it as a psychological illness.
Patients attribute much of their mistreatment to the name “chronic fatigue syndrome,” chosen by the disease centers in 1988.
“We wanted to move it away from this label that often elicits very trite comments, possibly intended to be humorous, like ‘I’m tired, I must have that too,’ ” Dr. Rowe said. “Everybody’s had some experience of fatigue, but this is so much more than that.”
Leonard Jason, a psychology professor at DePaul University in Chicago and an expert on the illness, predicted that patients would be reluctant to accept the new name.
“The committee has come up with a name without vetting it,” said Dr. Jason. “And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”
Many strongly prefer myalgic encephalomyelitis, because it underscores a physical basis for the condition.
The authors of the new report agreed that the term chronic fatigue syndrome “has done a disservice to many patients,” but said that myalgic encephalomyelitis “does not accurately describe the major features of the disease.”
Although some research has suggested that inflammation of the central nervous system is involved, its role is not proven, and muscle pain is not as prominent as other features.
Most patients develop the syndrome after contracting a cold, flu or other viral illness, but other environmental or toxic exposures may act as triggers. Although no cause has been identified, people with the illness may suffer neurological, hormonal and immunological impairments.
The new diagnostic criteria include six months of profound, unexplained fatigue and post-exertional malaise, as well as a third key symptom: unrefreshing sleep. Patients must also exhibit cognitive problems or “orthostatic intolerance,” an inability to stand upright for more than a short period.
Developing diagnostic criteria is easiest when medical tests can be used, as with HIV or hepatitis C, and much harder when an illness must be defined by its symptoms. Researchers and clinicians have developed at least 20 different definitions over the years for ME/CFS.
The most commonly used has been the C.D.C.’s definition, but many researchers and clinicians complain that those criteria identify many patients who more likely are suffering from depression and other conditions that can cause prolonged fatigue.
The new report is one of two studies that have been the focus of intense debate among patients with ME/CFS. The National Institutes of Health is currently revising a draft report about research priorities for the illness.
Patients have sharply criticized both efforts.
Although the I.O.M. panel’s 15 members included some clinicians with strong experience in treating patients with ME/CFS, a majority were not known to have any expertise in the illness.
Before the panel began deliberations, dozens clinicians and researchers signed a letter declaring that a case definition developed by an international committee of experts in 2003 should be the basis of any discussion.
That definition included multiple symptoms, but some clinicians complained it was difficult to apply in practice.
READ THE REPORT
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
Released:February 10, 2015
Report at a Glance
– Presentation (PDF)
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_Powerpoint.pdf
– Report Brief (PDF)
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
– Key Facts (PDF)
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf
– Diagnostic Algorithm (HTML)
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm
– Proposed-Diagnostic-Criteria (HTML)
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_ProposedDiagnosticCriteria
Download an introductory slide for this report >>
http://www.iom.edu/~/media/MECFS_resources.zip?la=en
Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/CFS. This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives.
The Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. In Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the
committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public.
Personally, I feel disgusted and devastated at this non committal, nonsense of a name. It doesn’t even make sense to me, with my whole body shutting down bit by bit.
Neurological problems galore. Vascular problems galore and immune problems etc.
I disagree with the symptom of ‘systemic exertion intolerance’ being the most pronounced symptom. It certainly is part of this disease, but many more I’ve mentioned are far more debilitating and serious as time goes by.
Who on earth is going to understand what we have got with this SEID.
Absolutely ridiculous!
This is very positive. Not a very catchy name but better than CFS. The criteria is what we wanted as well. Let’s see the bright side!
PS It looks to me as if they have searched, no flicked through the dictionary and found names to replace Chronic Fatigue, that sound to non ME sufferers, like they may be, at best, clinical – then stuck disease on the end to try and placate us all.
Confusion seems the best they can do! Childish and unprofessional.
“Systemic Exertion Intolerance Disease” sounds much, much worse than CFS to me. It seems calculated to exclude all thoughts of so many, deep, inherent symptoms – sicknesses in their own right – of CFS which are not merely tiredness or inability to act.
Where CFS has the same problem to a much lesser degree – exertion intolerance really, really, clearly implies the only real problem is that these people just can’t get off the sofa.
It also seems to ignore far more the very serious and often very severe cognitive aspect – severe mental fatigue and brain fog, including inability to think or picture normal activities such as you could then enact them. (This is how tired CFS sufferers can be, without even the mind being awake, before exertion could even be considered.) Few people who don’t suffer from this condition are going to naturally associate “exertion intolerance” with the cognitive aspects.
CFS is a really, really serious and really complex neurological condition. This decision in the USA trivialises it and in many ways seems to suggest so many potential mis-categorisations.
Now it really can sound like something of a psychiatric disorder rather than something clearly neurological. While there is no evidence whatsoever that this is psychiatric, and is always considered a physical condition, as other neurological disorders are.
The other probem is that some CFS sufferers are indeed able to do exercise, and even improve their situation through exercise – whether or not CFS can be cured that way. (Rarely, some sufferers report they have been able to lose a lot of the condition that way.) So, for these people, it can seem, once they’re able to do regular exercise that they do not actually have CFS because post-exertional malaise is not so definitive for them. Yet for a significant or substantial amount of the time, these people can still suffer from CFS. The disorder being neurological, I was aware that many experts have agreed that post-exertional malaise is not in fact a necessary requirement for CFS. It may be a very, very common symptom – but the way neurological disorders can work means that for some sufferers – their fatigue is quite to entirely unpredictable.
I don’t like the name SEID either Hope.
But, Dr Ron Davies was on the committee, he has won a nobel prize, has a son sick with ME, and is on the scientific panel at The End ME/CFS Project – Open Medicine Foundation: http://www.openmedicinefoundation.org/the-end-mecfs-project/
He is quoted in a related article as saying:
“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.”
But Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name.”
Davis hopes the report will convince all clinicians that they can diagnose the disease and that it is real. “I hope it will get rid of those who may not believe it,” Davis said. “They’ll have to keep it to themselves. It’s incompetence and it’s malpractice.”
http://news.sciencemag.org/health/2015/02/goodbye-chronic-fatigue-syndrome-hello-seid
For American’s and many in the UK, perhaps it is better than Chronic Fatigue Syndrome?
Personally, I think they should have stuck with ME/CFS if, as indicated, they expect (or hope) the science will lead to a necessary revision in name and criteria in 5 years.
Might have helped save some of the $1million spent on this review.
The new name is clunky and not ideal, but so much better than the hated CFS handle.
M.E. is still a perfectly valid name and I see no reason to stop using it.
I therefore suggest that we use ME/ SEID from now on.
I’m pleased you agree firestormm and Dionysus. I will be sticking with ME. I too read Dr Davis’ comments and I believe he has a handle on the situation, as they say! However, his son was only diagnosed 3 years ago and perhaps is not experiencing the more serious problems at the moment. Of course i hope he never does, but does Dr Davis realise this at the moment either?
As I have also commented, we need the further specialist tests to diagnose the neurological diseases etc, which I at least have been denied even after several consultations with neurologists. Dr Byron Hyde makes this clear in his book.
No funds or resources and no one wants to know!!