IOM Implementation: What's Missing (besides the name change)

In early 2015, the Institute of Medicine put out their long feared report on ME/CFS. They searched through the research, and a committee made of experts (both in the disease and in other pertinent fields) made some suggestions that are intended to influence US health agencies.
  • They recommended a new clinical criteria.
  • They recommended a new name.
  • They recommended a new diagnostic code with the new name.
  • They recommended more research funding.
  • They recommended a health provider education/dissemination campaign.
  • They recommended the government set up a screen/diagnostic toolkit for clinicians.
  • They recommended that the criteria be reviewed again in 5 years for any changes science my dictate are needed.
 The CDC and NIH have started work on implementing many of these recommendations. The CDC website is expected to be changed soon to have the new criteria. They have a workgroup to help them in the implementation. This workgroup includes patients, SEID experts and people from medical professional organizations. The CDC is also continuing their medical school education project as well as speaking at conferences about the disease.

The NIH is doing an in-house study looking closely at the immune system in this disease and just announced funding for a network of special research centers, including data-sharing. This structure will increase the credibility and hopefully the amount of research in our disease.

But if you see the list above, you'll see some of the recommendations aren't being talked about any more or are not receiving any action.

Of course, there's the name change, which I support, but the Chronic Fatigue Syndrome Advisory Committee has not recommended to adopt. There was a push in the last CFSAC to start the process for the update of the criteria. I'm not concerned about that at this time. I think it's too early. Let's start talking about that in 2018.

To my knowledge, no one has submitted a new diagnostic code for the systemic exertion intolerance disease. And I also support that being done asap, with the new name.

The IOM Committee created a physician's guide. But we need a toolkit, as is recommended. Likely this will come out of the CDC's efforts.

And likely the toolkit will be useful in medical provider education. The IOM gave much detail on opportunities of dissemination and education.

In the text, one of the suggestions for getting this done is this:

Designation of an HHS Point Person HHS should consider appointing an individual to oversee the dissemination of the new diagnostic criteria nationwide to health care professionals (i.e., a “SEID czar” within the department). This person should have access to the necessary resources and the authority to implement the dissemination plans for the new criteria and address any questions or concerns that arise. Having such an individual in place will also help demonstrate HHS’s responsiveness to this issue.
I've not heard anyone talking about this. Is this going to come later? Or have we all forgotten it? I would love to see a SEID czar who can coordinate and be a driving force for all government SEID things. It would be someone who's job is to do outreach to increase public and medical provider knowledge of the disease. Everyone else in the government involved in SEID has other work, also. One of the biggest problems we have is lack of knowledgeable clinical care and misperceptions among medical providers and the public.
I think it would go much faster and be more effective if the advertising campaign includes a new name and a new code (basically a rebranding). Doing an education campaign about a new criteria but not a new name just brings to the new criteria the baggage from the current and bad name. Note what the IOM Committee said:

But even if I can't get the new name and code, is anyone going to follow the suggestion of having a czar to do lead the campaign?


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