CDC Treatment Evidence Review - consultation period

From a Solve email.

"Solve M.E. evaluated if the report serves its purpose. We asked:

  1. Did the CDC accomplish the goal it published?
  2. Does this effort comply with Congressional intent?
  3. Did this effort contribute to the field?
Our answers are: no, no, and no.

Solve M.E. Public Comment Highlights:

  • Solve M.E. strongly recommends against the adoption of this review in any format
  • The review does not meet congressional intentions to “address medical misinformation and stigma,” “resolve case definition issues,” or “work with disease experts and patients”
  • Solve M.E. joins others who criticize the applicability of the findings, ineffectiveness of the review, failure to address harmful evidence, and failure to address bias
  • Solve M.E. encourages the utilization and incorporation of new data related to SARS-CoV-2 and Long COVID
  • CDC does not meet its own goals of publishing evidence-based treatment guidelines
  • Solve M.E. makes recommendations to improve patient input and raises concerns at the lack of transparency in selecting contractors and contractor’s review process
Read our full comments on the review here."

Also in same email.

"In a recent public comment period, Solve M.E. criticized the CDC for failing to meet the guidance of Congress. A recent, potentially damaging, draft review took two years of CDC resources but doesn’t address any of the intentions published by Congress. Congress needs to know that CDC failing to meet its instructions to:

  • “collaborate with disease experts”
  • “resolve the case definition issues”
  • “counter medical misinformation and stigma”
Send a message to your members of Congress today and ask them to ensure CDC is meeting its commitments to Congress and all Americans touched by ME/CFS.

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00145 "
 
didn't know where to post this but thought maybe someone in the US should suggest they update their website Last medically reviewed on July 18, 2017
For some people with fatigue, doctors may consider offering a referral for counselling or a talking therapy known as cognitive behavioral therapy (CBT).

Some doctors specialize in chronic fatigue syndrome (or myalgic encephalopathy) services, and these may be a suitable referral even for people who do not meet the criteria for this diagnosis. They will offer a consultant opinion for occupational reasons for fatigue, or may provide a structured, multidisciplinary approach to management, including supervised graded exercise therapy.
Click to expand...
https://www.medicalnewstoday.com/articles/8877
 
At today's CDC stakeholder engagement call, Dr. Beth Unger made the following statement about the evidence review that they had contracted with a group (OSHU) in Oregon to conduct.

Bottom line, neither they nor OSHU will be publishing the review in a peer reviewed journal. They will post it, comments, and responses on their web site.

"As you likely remember, we undertook the systematic review as the first step in what we hoped would lead to the development of comprehensive ME/CFS treatment guidelines. We are committed to advancing the research and supporting the ME/CFS community however we can and recognize that improving clinical care remains a critical issue. However, after assessing the systematic review, we’ve decided that there is not enough evidence to move forward with treatment recommendations at this time. In the interest of transparency, we will be posting the final report, comments and responses on our ME/CFS website. We will not be publishing the systematic review in a peer reviewed journal. I want to note that, with the posting of the systematic review, we are not endorsing specific studies. But we do want the information to be available should others in the ME/CFS field undertake a review of the literature in the future."​
 
OK so money and time wasted for nothing? That's just great leadership and management. It's just other people's money and lives, time's-a-wasting.

Because it's always good news when someone screwed up and they tell you that it's all OK because they don't stand by what they did anyway. That's how you know this is in good capable leadership hands.
 
I’m less buoyant than others regarding this measured CDC step. If the independent reviewer’s findings still find footing on the agency’s disease specific webpage, this may implicitly appear like a government endorsement of whatever drivel they cooked up.

I can foresee some supercilious clinician citing it in a disingenuous fashion, especially considering the dearth of large systemic reviews of the existing ME literature. GET/CBT deserve to be consigned to the medical anti-canon. Anything that resurrects them in the slightest is despicable.

N.B. I’m operating under the assumption that GET/CBT received a more effusive backing than the NICE Guidelines. I seem to recall discussion on how this Oregonian reviewer graded some GET/CBT studies more generously than merited. Happy to be disproven of course!
 
It would be nice if someone could arrange a conference so those at OHSU could meet and hear the doctors that are studying this disease in good ways. OHSU is very regionally influential, and could, if they wanted to and accessed the knowledge available, carry out research themselves.
 
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