Beyond the Roll-Out

The Institute of Medicine rolled out their report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Refinding an Illness” on February 10th, and it is pretty much as expected. First glance gives readers the impression the committee nailed it but closer inspection reveals some serious flaws. But, at least, it is better than the 1994 Fukuda criteria clinicians are still using. And the committee gave us a close variation of the Canadian Consensus Criteria, which surprised more than a few in the M.E. community. The IOM committee also made it clear they do not expect this criteria to stand the test of time and recommended it be changed as new research studies are completed, in no later than five years. In the meantime, they tell us the report is a solid foundation from which to build.

Also, the IOM, almost apologetically, christened the disease with a new name: Systemic Exertion Intolerance Disease, or SEID, thus replacing the name hated by all, Chronic Fatigue Syndrome.  Now, instead of people making jokes that they must be sick because they are “fatigued”, they are making jokes that they must be sick because they are “intolerant to exertion”.  Hardly an improvement but at least we don’t have a “syndrome” anymore; at last, we have a “disease”.  However, apparently the committee did not give thought to the fact SEID spelled backwards is DIES, which, I have to say as a patient, is kind of alarming.

In a move which still has advocates scratching their heads, the committee reported they could not justify joining most of the rest of the world in calling the disease the much preferred name, Myalgic Encephalomyelitis. They claim they could not find research to justify muscle pain and brain inflammation as dominant symptoms as the name M.E. implies. Advocates were quick, however, to point to the studies they could have referenced but chose to ignore. There are studies currently in progress which could provide further justification for use of the words myalgic and encephalomyelitis, so it begs the question why not simply defer renaming the disease until their recommended review in five years or less?  At least one committee member has been quoted as saying the committee fully expects the name to change at the future review, so why throw SEID into the mix at all?  Many patients, including myself, have decided to stick with M.E. when referring to the disease.

With the IOM report roll-out came a media blitz like nothing the M.E. community has ever seen. Hear ye one and all! The Institute of Medicine today declares Chronic Fatigue Syndrome is a real disease!  And, a real disease deserves a new name! Goodbye CFS, hello SEID. Articles appeared in print as soon as the press embarkgo was lifted at 11:00 a.m. EST. Publications ranging from major medical journals to home town newspapers published articles reporting the big news. Nearly every article featured a picture of a pretty caucasian woman, sporting beautifully manicured nails, well-coiffed and well-dressed, resting her tired head on her delicately placed hand so as not to smudge her perfect make-up; a stark contrast from the typical housebound, unkempt M.E. patient lying on a couch.

Each online article garnered its share of “expert” commentators.. As usual, there were arrogant doctors dismissing the disease and calling us simply depressed. And, there were the folks who used to have it for a few months but got better by doing x, y or z and those who exercised their way back to perfect health. The postive thinkers and nutrition nuts were out in force  And every article had an ample share of bullies calling patients lazy parasites on society, opining that it must be nice to lay around all day, doing nothing but collecting disability money.

Nightly news on all the major networks gave the IOM report release at least ninety seconds. Television news anchors generally looked amused as they dutifully read off  teleprompters that chronic fatigue syndrome is a real disease and that patients are no longer fatigued but exertion intolerant instead. Network news called in their television doctors to add their professional confirmation, although glaringly clear the doctors knew nothing about the disease and had not read a word of the report. NBC had to issue a correction after their television doctor reported that exertion intolerant patients frequently get better with exercise.

A television outlet, KOAT in Albuquerque, New Mexico, livened up their morning news segment by asking people on the street how much sleep they got the night before. No one bothered to read the report there either and they fed their viewers eighty seconds of outlandish “facts” and ten seconds of truth. The woman anchor ended the segment by telling her co-anchor, as an aside out the side of her mouth, she had been tired for 13 years. In a helpful touch to us tired sufferers, they announced they are going to feature their favorite Wakeup app in a future report.

This evening, two days after the roll out, the M.E. patient community was in a reflective mood on social media. It is as if we are experiencing collective post-exertional malaise. The IOM report had been much anticipated, and hotly contested. Now that we have it, and have had a chance to read and digest it, exhaustion from the exertion is taking a toll. We have fought hard for this disease to be recognized and validated. Now that the IOM committee gave us that validation, it leaves us pondering our next move or even if we have the physical and emotional ability to move at all.

One thing the IOM report roll-out made glaringly clear is how M.E. and M.E. patients are perceived in the eyes of an unknowing public and prejudiced medical profession. It is going to take so much work to turn those perceptions around. We won a big battle but it pales in comparison to the war that rages on. Advocates are questioning how much they have left to give to this cause. Some are leaving the fight, realizing their health will no longer permit them to give of themselves for the greater good.

IOM committee chairman Ellen Clayton, near the conclusion of the roll-out meeting, took a moment to speak personally to the M.E. community. She urged us to take this report and use it as fodder to secure the much needed research funding. She urged us to ACT UP, as the AIDS activists had done; to rise up and fight to make our government help. I understand others are urging the same. It is unfortunate they do not realize M.E. does not allow us to ACT UP. We are too sick to march on Washington D.C. We are too sick to lobby Congress as extensively as will be needed. We are too sick to stage awareness concerts. We are too sick to do much more than write a few letters, compose a few tweets and forward some e-mails. Our families give their all as our caregivers and have little left to fight for the cause on our behalf.

Every other major disease–and make no mistake M.E. is a major disease–has at least one celebrity spokesperson but, what celebrity wants to be associated with a disease the general public finds as fodder for jokes? Every major disease has at least one rich philanthropist to provide a financial base for their awareness and research efforts but who can afford being associated with a disease that invokes laughter? Every major disease has at least one corporate sponsor to underwrite awareness campaigns but what corporation wants to sponsor a bunch of tired, lazy people? And, as was made crystal clear over the past three days, unless M.E. has actually touched their lives, members of the general public are more inclined to make light of the disease than fight for the sufferers.

The Institute of Medicine panel formed a unanimous consensus and gave us a report which will be respected by those with the power to invoke real change. We have the needed validation to draw the attention of Congress and get the desperately needed research funding.  It is a tragedy the M.E. community may be too sick to use it and no one else cares enough to help.

 

8 thoughts on “Beyond the Roll-Out

  1. Fantastic response! The media response to the IOM report has been surprisingly avid though unsurprisingly shallow and flawed. The same old cliches rolled out demonstrate the issue with the name CFS in the first place, and confirmed the concern of many that SEID was not the name that would enhance credibility. Instead it looked like more of the same. There were many different options that the committee had, as you outlined, and it is a shame that they didn’t take them. Really it is only research that will shift perceptions. And a big part of that is the CDC getting behind funding biomedical (as opposed to psychological) research into ME/CFS. Others will follow. Hopefully the powers that be will have read the report, written by outsiders to the ME/CFS field, and heed their points… this is a serious disease, and the medical profession still, after decades, has no idea what causes it.

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  2. How will it help anyone to secure research funding for the construct SEID, which has such broad criteria it will include people with many different illnesses. ME has not disappeared, as much as the CDC, NIH, HHS and IOM would like it to. What we need to raise awareness of is that ME is a serious neurological illness, recognized as such since 1969 by the WHO, and still exists as its own entity, with its own International Consensus Criteria. Don’t let ME be buried under SEID.

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    • Thank you for your reply. Since I wrote this post a few days ago, I have been giving a lot of thought to this very issue. The SEID criteria is seriously flawed. If that is the criteria used in future research studies, it only serves to further muddy the waters. If studies are not using the ICC or CCC research criteria, I think we are better off with zero federal grant funds. At least with privately funded research, ME is not getting buried. Also, the IOM gave us diagnostic criteria only, with no mention of research criteria. So far, I have heard no one from HHS answer questons about what they intend to do about research criteria for SEID.

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      • Thanks for your thoughts on this, I completely agree. We have to keep asking questions and pushing forward. I don’t think this new label will serve us any better than “hysteria” served your grandmother. She deserved better and we deserve better.

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  3. Very well said. Thank you. I think the committee meant well, but it should never have been convened in the first place. What does HHS have an advisory committee for anyway? CFSAC had asked for an OPEN workshop of EXPERTS – like the committee that wrote the Canadian Consensus Criteria (CCC) – charged with the task of updating the CCC. A letter signed by 60 researchers and clinicians internationally asked for the same thing. That was what should have happened.

    If HHS (which includes both NIH and CDC) did not have enough respect to do this the right way, what makes anyone think they will implement any of the good suggestions in the report? If they implement the report, CDC would have to get GET and CBT off their website. If they implement the report, NIH has to dramatically increase research funding in areas highlighted by the committee. If both things happen, the report has been a success.

    If all they do is change the name and criteria, the report has failed. Especially if CDC and NIH get to cherry pick what they want and ignore the rest.

    As someone who has done my utmost to “Act-Up” for the past 20 years – and failed utterly – I have to wonder how anyone who understands this disease could lay the blame for inaction on patients (even if unintentionally).

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