Miriam Tucker has been covering ME/CFS for some time now, and published a great piece for NPR about the IOM report today. I was interviewed for the piece, and I can say that Miriam understands this disease, much like David Tuller and some of the other journalists who have covered the topic.
The reality of journalism – even online journalism – is that word count matters. Miriam’s piece came in at about 800 words, not much room to cover the complex issues arising from the IOM report. And I tend to be a wordy person, so I’ve posted my complete email interview with Miriam from yesterday.
***********
Miriam, I haven’t had a chance to review the report yet, so my reaction is based on the briefing documents and the event today. I also posted a quick blog post.
What do I think of the criteria?
I think the IOM Panel got a lot of things right with the new criteria. They focused on the central feature of the disease, post-exertional malaise, and limited the required symptoms to a short list. They also make recommendations on frequency and severity, which Dr. Jason’s work has shown is essential. Finally, it appears that this diagnosis is no longer a process of exclusion, as CDC and other entities have insisted for decades. When I was diagnosed, my doctors focused on ruling things out, and CFS was the diagnosis of last resort after everything else was eliminated. Now if you meet these criteria, you have this disease. That is a huge shift, and I’m not sure if people have really keyed in on that yet.
What do I think of the name?
SEID will be controversial, especially for the advocates like myself who argued for use of the term myalgic encephalomyelitis. The name does two things right – it focuses on the key symptom of PEM, and it uses the word “disease” which is very important. However, I think this is a risky change. It could take a long time to secure a diagnostic code, and it’s not clear who will be responsible for making that proposal. Another concern is that the name change will be made, but not the definition change. In other words, if CDC simply renames the disease to SEID but does not actually shift to the new criteria, then we are no further ahead. The name and criteria should be used together to make a clean break from the diagnostic waste basket of CFS.
What do I like/what done better?
I would like to see data that support SEID as a better name than ME.
Will it help patients?
That all depends on how widely and how accurately the criteria are implemented. Again, the name and criteria should be used as a clean break and not simply replacing CFS with SEID.
What do I want to have happen next?
I want to hear from HHS. So far, the only statement I have seen is the one from Dr. Nancy Lee that I’ve copied below [NB: the statement went out on the CFSAC listserv on February 10]. That is a non-statement as far as I’m concerned. I want to know if CDC will adopt these criteria, and accept PEM as mandatory for diagnosis. I want to know if CDC and HRSA will roll out the material for clinicians. And the most important issue of all: will NIH actually invest the research dollars necessary to understand and treat this disease? Without a substantial and meaningful increase in research funding, all these other issues will be meaningless.
Statement from Nancy C. Lee, MD, Deputy Assistant Secretary for Health – Women’s Health and Director of the HHS Office on Women’s Health:
The HHS Office on Women’s Health and the other sponsoring agencies* want to thank the Institute of Medicine (IOM) Committee on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for its thoughtful analysis in developing this important report. We are pleased with the committee’s recognition of the impact that ME/CFS has on the lives of many Americans. With their recommendation of a streamlined, yet evidence-based set of diagnostic criteria, the IOM committee has taken a critical step toward assisting medical providers in making a diagnosis for those with this serious and debilitating illness.
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.
*The Agency for Health Care Research; the Centers for Disease Control and Prevention; the Food and Drug Administration; the National Institutes of Health; and the Social Security Administration.
The report can be found at the following link:
http://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness
Jennie, was this on the radio? How did they pronounce SEID?
How do you pronounce it?
No, Miriam’s piece was just on the NPR blog.
I’m pronouncing the name phonetically: Ess Eee Eye Dee. Of course, my husband pointed out that not only do I have a “SEID” but I also have a back and a front.
I totally agree about the problematic nature of the name SEID…..They said they did not want to imply causation of what is now a disease complex however by using the word “exercise induced” they are doing just that. There are many cases where the aappearance of ME/CFS symtom complex is not related to exercise or anything else for that matter. The problem is idiopathic and that needs to be stated clearly at this time. That should have been included in the name….there are many standard disease process where we dont know the causal chain and therefore use the word Ideopathic in their nomanclature…They should have used it instead of using the words “exercise induced.”
This many be a really bad thing. Just as years ago some people wanted to include a viral or environmental cause in the name…..Now we will be stuck with it being “exercise induced” Why not sleep deprivation, or a myriad of other causes that have been proposed.
….there were many ways around this that could have been explored that still really did describe the severity of the disease without implying and emphasizing a single factor. Many of us have had this syndrome for decades and exercise induction is a minor issue. I don’t deny that when I am in the midst of a full blown attack, I dont want to exercise, but when in remission, I am very physically active without consequence as are many. In remission I dont limit myself and look forward to those time when I feel relatively well. I have been diagnosed with ME/CFS over 3 decades ago…
The reader comments at the end of the NPR story are so disheartening. It seems that, whatever the name, disrespect is the knee-jerk reaction. People who have this disease and those who love and care for them seem to be the only ones who really get it (plus a few enlightened doctors–but the rheumatologist on last night’s NBC Nightly News was still pushing CBT and exercise, so ignorance remains a common problem among physicians.) I think the name change means relatively little in terms of public perception. I can only hope that the IOM report’s push for more research dollars will be persuasive.
I agree with you. I also find it to be somewhat disturbing that people are writing such comments. I have never felt the urge to verbally attack or question a person who was sick or ill with a disease. It is almost as if people feel threatened or attacked somehow by people with ME/CFS. They seem to be reacting in a defensive way to us. I think the root of this lies in something about the American culture. The trend of lately seems to be to attack weakness.
There’s various opinions whether IOM report and the new name it is good or not. Which ever you choose, the sad fact is they picked a brand new name and criteria that now needs to be rolled out to doctors etc.
Studies show that it takes an average of 17 years to implement clinical research results in daily practice” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC130085/).
By implementing SEID we start the clock over again. At least ME has been around for a long time and the CCC since 2003.
If they had gone with the 50+ experts we’d be able to focus on solutions. Now we have to first spend huge $$$ and time to educate everyone then they can get on with finding solutions.
I am concerned about how the diagnosis definition will work with children. They don’t know how to explain things. They tend to accommodate and symptoms go unnoticed for a time, things like word finding and other examples of cognitive problems were not obvious until my daughter was terribly sick for over a year. Headaches and GI problems were terrible and because of that exertion got overlooked.
For what it is worth, I read the word and pronounce it SEED.
To Dean – It is “exertion intolerance,” not “exercise induced.” The former describes PEM, which unfortunately is part of the report itself, in those words. I do hate “malaise”!
I was attached to “myalgic encephalomyelitis,” but I’ve realized that name no longer sounds serious because it’s been coupled with “chronic fatigue syndrome” in the bogus “ME/CFS” construct for the past dozen years. “ME” has become synonymous with “CFS,” which in turn is synonymous with “psychosomatic complaints of lazy whiners.”
The new name and criteria are imperfect, but I hope HHS adopts them. Otherwise we’ll be stuck with “CFS” and Fukuda for the next 30 years.
Mandatory PEM plus a less stigmatizing name are a step forward.
Thanks for this piece, Jennie. I agree that there’s a lot of good stuff in this report.
I watched the video of the launch of the report and was very impressed by the attitude of the committee. They did all that work for free!
I’d like to email and thank them. Do you know who I should send an email to?
I think it’s important that when people do things well for us, that we thank them.
Lovely thought, Sasha. I bet an email to mecfs at iom dot edu would be conveyed to the committee.
Thanks, Jennie! I’ll pass that on to others who are interested.
I’ve had 4 sleep studies, 3 MSLTs, one spinal tap, a MRI, and countless bloodwork over the past two years. The “diagnosis” — idiopathic hypersomnia. My psychiatrist suggests my “sleepiness” is psychosomatic. My psychologist thinks it’s work stress. I’ve seen a psychiatrist, psychologist, neurologist, a doctor board certified in sleep medicine, a pulmonologist, and my primary care physician. Who should be making the SEID diagnosis?
I saw that piece on the NBC Nightly News where the doctor suggested CBT and exercise. I laughed. I run a 5k and right after can fall fast asleep. It’s an exhausting journey being exhausted all the time. 🙁
Yes. I saw the doctor on NBC News, too, who didn’t say much except this disease is real. She said it can be treated with medicine, CBT and exercise. I threw up my hands.
That isn’t what the IOM said, to my knowledge. I only read the short version that the panel released. I hope they didn’t say that.
They did say that physical and cognitive exertion can bring on PEM. Somewhere else I read “and emotional” exertion, too. But that word “malaise” sticks in my throat. It’s such a weak word. People being bedridden or homebound for days or weeks is not “malaise.”
I was glad to see that the three panelists who announced the report know about the disease, treat people who have it or, one one case, has a son with it. They were not “behavioral experts.”
Most of the press has been favorable, saying it will help us, says this is a real disease with a physical basis and cause. I like that “disease” is in the proposed name, and not “syndrome.” I like that “systemic” is in the name as it shows it can affect several systems. But I’m not sure about the rest of the name.
Anyway, I think this is progress. But what will happen now? That’s the nail-biter.
What will NIH do? Will it fund more research?
The IOM panel said this disease is way underfunded for research. So, maybe
something will move ahead on this. At a time of federal budget tightening,
and Congress the way it is, who knows?
Through the efforts of advocates AND the IOM itself, NBC has posted a correction on their website. The correction states that exercise is contraindicated for most patients. Furthermore, the IOM report itself does not endorse CBT and GET.
Jenny – not related directly to your NPR interview but I’m placing it here for convenience which I hope is OK:
Question ? The IOM is effectively a ‘recommendation’ to the DHHS, so what is the formal process (if any) by which the DHHS accepts or rejects the recommendation(s) ?
Perhaps this is obvious to US natives, but it is only following someone posing this question to me that it actually occured to me that there must be some way for the IOM process to go, or am I missing something ???
Thanks.
NA Wright
This is a really important question, NA. There is no formal process for adoption of the recommendations, like there is for CFSAC recommendations. This is actually going to be the subject of my next blog post.
Thanks for helping on the NBC correction. That was so unnerving; here, the IOM did not say that, and a doctor on national TV did say GET and CBT, thus causing me and others with ME/CFS to freak out. Glad it’s corrected.
Very pleased to see that Miriam Tucker has you as a regular contact for stories on this disease. You’re a perfect patient perspective. If I were in charge of PR for this disease, you’d be on the top of my list of patients for journalists to interview. Tucker is turning into a spectacular journo on our behalf (even if journalists often hate to think they are reporting on anyone’s “behalf”). Her piece “Chronic Fatigue Syndrome: Wrong name, real illness” (note: Medscape login req’d) was hands down the BEST piece I’ve ever seen on this disease. Ever.
As I’ve been making my way slowly through the IOM report, I saw that you were referenced — specifically your PEM series, if I remember correctly. 🙂 I was excited to see a quote from the statement I submitted to the panel last spring on pg.31. I mean, they actually read our statements! Our activism — made possible in large part because of your blog — appears to have had a real impact on this report, and I hope it encourages more in our community to thoughtfully engage with efforts like IOM and P2P in the future.