“It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” IOM Report
The title of the report “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” said it all. The committee spent almost a year and went further and deeper into the literature on ME/CFS – ploughing through over 10,000 documents – than anyone has before. Given that kind of effort perhaps it’s not surprising that they felt disposed to swing for the fences. Not only did they propose an entirely name – one with no connections to the past – but they also redefined how to diagnose it.
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.
Running well over 200 pages the report will take some time to get to. Dr. Peter Rowe, a Committee member, called it the best summary of ME/CFS evidence he had ever seen. Given the decades and decades of ME/CFS expertise on the committee, that doesn’t surprise me at all.
It’s a important report. It wasn’t just the NIH asking for this report: the CDC, FDA, AHRQ and Social Security Administration also asked for it and that means that whether they agree with the new definition or name or not they’re all, by default, essentially on board. The adage be wary of what you asked for comes to mind.
What they got are slimmed down diagnostic criteria based on the latest research, and a name that illuminates the core feature of this disease and destroys any conception of malingering. They got a name, that to my mind begs for more research – in particular more exercise e.g. exertion studies – to get at the “exertion intolerance” in it.
A New Name – A New Beginning?
“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. Everybody’s had some experience of fatigue, but this is so much more than that.” Dr. Peter Rowe
Names are just so tough. Finding a name for the two websites I created was brutal, but naming a disease is something else. Ron Davis said the committee went through over 100 options and stated they really struggled with it. He didn’t feel they’d found the perfect name, but citing his struggles getting the seriousness of the disorder striking his son across to others, that it was essential to get rid of the chronic fatigue syndrome name once and for all.
““My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once”
The committee proposed that chronic fatigue syndrome or ME/CFS or ME or whatever you want to call it, whould henceforth go by the somewhat awkward sounding, but nevertheless very descriptive “systemic exertion intolerance disease”
Fatigue is finally out and post-exertional malaise, i.e., “exertion intolerance” is in. Syndrome is out and disease is in – two substantial steps forward. With this name “ME/CFS” finally has the opportunity to be know by its core characteristic – an intolerance to – not a problem with – but an actual intolerance to – exertion.
The committee clearly put a priority on producing a very descriptive name. That meant naming it after a person (“Ramseys’s disorder”) was out, as was probably the crowd favorite, myalgic encephalomyelitis (ME). As good as ME was it simply did not describe anything close to the range of research findings in this disorder. Scientifically the members of the committee could not justify using it.
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.
This report makes clear that doctors saying the illness does not exist – something Ron Davis called “malpractice” – should eventually stop as well.
The name has the weaknesses that any entirely symptom-based name does. A little physiology would have gone a long way. A name like inflammatory exertion disorder would be so much better, but with no consensus on the core pathophysiological pathways in this disorder, it was probably inevitable that we would once again be a symptom-based name. At least this time – the symptoms are accurate.
This isn’t the end game for the name. The committee expects changes to come as the research proceeds and called for an overview in five years.
If it’s adopted by the DHHS and it’s hard to see why they wouldn’t given the prestige of the Institute of Medicine, it should do the job. This name, as awkward as it is, does focus the mind and it’s got the considerable asset of being accurate. To this day I cringe at telling people I have “chronic fatigue syndrome”. I’ll cringe much, much less with SEID. I’ll stop cringing completely when the name got some physiology in it.
The new name also makes it doubly clear that what we really need is research we can use to build the physiological foundation for a next name – the name that sticks. This name should help.
They Can Definitely Get It
As with the P2P project, the IOM project demonstrates that given enough exposure, people outside the field can and do get it about ME/CFS. The unanimous vote on the report, with no dissenting opinions given indicates that the ME/CFS experts and outsiders agreed with each other.
The video presentation of the report kept cutting out and I was unable to glean much from it. It was clear, though, that the Committee chair – a Vanderbilt law professor – got what ME/CFS was about and at times sounded quite passionate at one point stating
“I think this gives advocates a tool to “Act Up”…..We’ve given you the fodder – Go for it!”
Lots of Press
The media is picking up the story and running with it. My brother told me he heard the news on an LA station. Two long time journalists on the ME/CFS scene, Jon Cohen and David Tuller have pieces on ScienceDirect and the New York Times. Today Health says “Chronic Fatigue Syndrome is Real and Serious and Needs a New Name”. Carol Head was reportedly on NBC Nightly News.
The San Francisco Gate lead off with “Fatigue syndrome validated by influential group“. In the article, Dr. Jose Montoya, the leader of the Chronic Fatigue Initiative at Stanford University greeted the report stating
“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives…For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words…..(The report) has the potential to change the narrative of this disease”
Take the poll and tell us what you think about the name.
Next Up – A New Approach to Diagnosing ME/CFS