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: