In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it is for patients and advocates to keep track of it all without a scorecard. Fortunately, I think we can boil the statements down to their essentials, and perhaps find the potential for meaningful consensus.
Let’s examine the statements in chronological order beginning with September 23rd and the announcement of the HHS contract with the IOM. I include links to the original documents so you can read them for yourself. My summary is my personal understanding and interpretation of the documents. If I’ve gotten anything wrong in my summary, I welcome correction from the statements’ authors.
First up we have the Experts’ Letter to Secretary Sebelius. Released on September 23rd, just hours after the HHS announcement, this letter is unprecedented in ME/CFS advocacy. The bottom line of the letter is 1) immediately adopt the Canadian Consensus Criteria for both clinical care and research; 2) continue to refine and update the CCC as needed; and 3) abandon the IOM effort because they lack the expertise.
Second, PANDORA Org issued a Position Statement on ME/CFS Criteria on September 26th. This seven page document covers more than just the IOM contract, and lays out PANDORA’s thinking on the case definition problem more broadly. For purposes of this post, the bottom line is: 1) the CCC is better than the Fukuda or Oxford definitions, but it’s not sufficient as is; 2) the IOM and the CFSAC do not have sufficient expertise to create a new definition; and 3) PANDORA is ready to help the true experts hold a workshop to create a definition.
Third, Dr. Lily Chu (who did not sign the Experts’ Letter) issued her own letter on September 28th and joined that effort. Dr. Chu is a member of the Board of the IACFS/ME, although this letter is her own position and not the official position of that organization. The bottom line of her letter is: 1) cancel the IOM contract; 2) the CCC needs refinement but is good enough to start using now; and 3) create definitions for clinical care and research through one process
use a single definition for clinical care and research. (Lily sent me this clarification, so I’ve updated accordingly)
Fourth, Dr. Bateman published a statement explaining why she was no longer supporting the Experts’ Letter on September 30th. Her statement came after a flurry of rumors that the Association had asked the thirty-five expert signatories to change their position (the Association denies this). The bottom line is: 1) the CCC is the best we have but it is not good enough and needs to be updated; 2) the IOM contract could lead to increased validation and federal funding; and 3) we should actively call for experts on the IOM panel and regroup if the panel falls short.
Fifth, the CFIDS Association issued a statement on October 2nd. The statement includes several paragraphs of background and links to primary documents such as the IOM Statement of Work and the Association’s email to the signatories. The bottom line of the Association’s statement is: 1) the CCC should be optimized for clinical use; 2) the IOM panel should have the best experts and that patients should have a strong voice; and 3) the Association promises strong opposition if the IOM falls short. In a follow-up statement from October 8th, the Association said it believes a positive working relationship with HHS and IOM is necessary in order to secure cooperation for increased funding and other meaningful progress.
Sixth, many advocates continue in their efforts to stop the IOM contract through a variety of means including petitions, letter writing campaigns, and more. I could fill a whole post with links to blog posts and sample letters and forums threads. The bottom line is 1) cancel the IOM contract and 2) immediately adopt CCC.
Seventh, I have to point out that there are other organizations and individuals who have not made public statements. The IACFS/ME has not issued a statement, although several of the members have made their positions clear. A number of prominent researchers and clinicians have not spoken publicly about this either, including Dr. Komaroff, Dr. Rowe, Dr. Kogelnik, Dr. Friedberg, and many of the voting members of the CFS Advisory Committee. I don’t think we can draw any firm conclusions from their silence.
What do all these statements have in common?
- The Fukuda definition is dead. Not a single statement – including the IOM Statement of Work – says that Fukuda is a reasonable definition. While no one is singing over its grave, everyone has tacitly acknowledged that it is time to move on and do better. This is huge!
- The CCC is the place to start. Everyone agrees that CCC should be the starting point for a clinical case definition. The Experts’ Letter, Chu’s letter, and many advocates acknowledge that CCC needs refinement, but advocate for its immediate adoption. PANDORA, Bateman and the CFIDS Association all want to refine and operationalize it prior to adopting it in practice.
- The case definition must be written by ME/CFS experts. The HHS Statement of Work does not define “expert” nor does it require a certain number or percentage of them on the IOM panel. However, all of the position statements I’ve reviewed make it clear that the definition must be written by experts, whether on the IOM or another mechanism. Bateman and the CFIDS Association seem optimistic that the IOM panel will have sufficient ME/CFS expertise. PANDORA is the only organization to attempt to define the degree of knowledge that makes an ME/CFS expert. The Experts’ Letter, Chu’s letter, and many advocates do not believe the IOM will appoint sufficient experts to the panel, and support the Experts’ Letter as the solution.
Some advocates, including me, have focused on the strong disagreement between organizations and individuals about the IOM contract. Because there is so much at stake, we all quickly moved into opposing camps based on whether we think the CCC should be adopted as is and whether the IOM will appoint the right experts to its panel. These disagreements remain, but going forward I think focusing on them could be a mistake that will hinder our effectiveness.
Despite our deep divisions over whether the IOM will do right by ME/CFS, I see an opportunity for agreement and mutual reinforcement. We all want a case definition, written and agreed upon by the ME/CFS experts, that accurately describes our disease. We want a definition that operationalizes and improves upon the CCC, rather than starting from scratch. I believe that this may be within our reach. We do not all need to take identical positions or use the same methods to advocate. But we do need to communicate, coordinate, and push common positions forward.
The best analogy I can think of is a canoe. I’ve only been in a canoe a handful of times, but I learned very quickly what happens when you only paddle one side of the canoe: you turn in circles. If you want to move the canoe forward, then you must paddle on both sides. Even better, have a partner sharing your canoe paddle on one side while you paddle on the other. The better you coordinate the paddles, the faster you go.
Our opponents would love nothing better than to see us turning in circles, squabbling over whose turn it is to hold the paddle. I’m not saying we need to join hands and sing Kumbaya. There are things that I disagree with in every statement that I summarized above. This is not about getting my way. This is about results. None of us have a monopoly on the right answer. In fact, I believe that the right answer is more likely to emerge if we pull together. I’m not saying there is no room for dissent. Disagreement is a key part of finding the right answer. I am saying that we are all in the same canoe (even though we wish we weren’t), and we need to start paddling together.