July 2017 Research 1st – Dr. Nahle Letter

Dear Friends,

Welcomed Development at the CDC

The recent updates to the ME/CFS information page on the Centers for Disease Control and Prevention (CDC) website is a key step forward in refining the narrative about ME/CFS and purging the disease space from noxious and dated inaccuracies. To this end, the CDC website has been streamlined and improved with the most noticeable change being the removal of the cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as recommended treatments for ME/CFS. This area has been a longstanding point of contention between the CDC and the patient community.

This development is in line with recent steps taken by government agencies regarding ME/CFS that is the result of intense pressure from patients and stakeholders. This includes the Agency for Health Research and Quality (AHRQ) downgrading its stand on the purported utility of GET in ME/CFS (See previous  analysis here) and the NIH taking steps to bolster ME/CFS research. (See previous editorial on the NIH ME/CFS research efforts here). The CDC has maintained that these ‘management tools’, not treatments, should have never been misinterpreted as treatment recommendation for ME/CFS. Nonetheless, this nuanced qualification has never been consistent with the patients’ experience nor helpful in disseminating accurate information with clarity to the larger network of healthcare professionals, beyond disease experts already aware of its complexity.

It is important to note that such development (which must be construed as only a first step in rectifying a critical deficit in public health awareness about ME/CFS and not an end to such endeavor) is the result of a sincere collective effort by nearly all stakeholders in the disease space, including federal agencies.

On September 26, 2016, a meeting organized by Dr. Elizabeth Unger of the CDC brought together, through a Technical Development Workgroup (TDW) established for that purpose, dozens of researchers, government officials, patient advocates and Medical education professionals for a full-day round table discussion that was open and transparent (see real time picture from inside that TDW meeting below). Alongside others, we made recommendations and worked collaboratively to improve the narrative throughout four independent sessions entitled:

  • IOM Diagnostic Criteria, Post-Exertional Malaise (PEM), and Diagnostic Algorithm
  • How to Present Website Content
  • Portals/Information for Different Audiences
  • Discussion of Education Materials

Once again, the change we now see at the CDC ME/CFS portal is the direct outcome of a true community effort. Here, we briefly enumerate some of the broader ramifications of the updated information featured on the CDC website as of July 3rd 2017:

    1. Effect on the overall medical establishment: The CDC is the source of information for many Continuing Medical Education (CME) programs and the authority on health information related to virtually any disease. It is difficult to alter the narrative through administrative channels at most comprehensive medicals schools or centers, especially those receiving federal funding, with an existing counternarrative at that CDC. Now, our effort in debunking myths and promoting up-to-date information at research centers, tertiary clinics and medical schools on ME/CFS got an assist.
    2. Effects on government policies and thought leaders: Government officials in the US and abroad as well as think tanks and influential non-governmental organizations (NGOs) around the world use data from the CDC, among other trusted sources, to formulate, improve and amend healthcare policies routinely or on demand. As such, updates to the CDC position, including the presentation of data and treatment status quo, have implications on any existing ME/CFS statute within the federal agencies and beyond. This is to say that a revision of all unfavorable policies relying on outdated information from the CDC portal or in the news is now – naturally – warranted.
    3. Effects on the patient community: The ME/CFS community was a key driver in making this change happen through sustained advocacy and data-driven engagement. Patients can now point to this change as an important and empowering step in the right direction. It is far cry from the demoralizing effect that inaccurate information had on the community and a call to sustain the effort towards more palpable change and real treatments.
Real-time capture of Dr. Nahle during the TDW (September 26, 2016) session in Atlanta. Visible in the background are many leading stakeholders including Mr. Rick Sprout (SMCI), Dr. Anthony Komaroff (HMS, RAC), Dr. Elizabeth Unger (organizer, CDC), Dr. Dan Peterson (Simmaron), Commander Gustavo Seinos, (OASH), Advocate Wilhelmina Jenkins alongside many experts and stakeholders.

Finally, I urge you to take a look inside at another major medical education effort by colleagues in the form of a primer for young people with ME/CFS that is receiving excellent reception. We collaborate with any ME/CFS organizations whenever we can to achieve common goals and we are very committed to the accuracy of ME/CFS medical information, the development of new materials and the advancement of credible science, anywhere.

Yours,

Zaher Nahle PhD, MPA
Chief Scientific Officer and Vice President for Research
Solve ME/CFS Initiative