[CFS-L] Solve M.E. Comments on CDC Draft Review of Diagnosis and Treatment of ME/CFS

[Dr. Marc-Alexander Fluks]

Source: SMCI
Date: August 20, 2021
URL: https://solvecfs.org/archive/
http://go.solvecfs.org/webmail/


Solve M.E. Comments on CDC Draft Review of Diagnosis and Treatment
of ME/CFS
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In 2018, the Centers for Disease Control (CDC) announced it was
soliciting bids to create evidence-based treatment guidelines for
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In 2019,
the CDC announced a contract with the Pacific Northwest Evidence-Based
Practice Center (EPC). The draft of this work, a Draft Systematic
Evidence Review, was shared with the public for the first time in the
form of a public comment review period, which closed this week.

The CDC has opened up this comment period to 'inform the final report'
and seek 'data and information, including reports and manuscripts that
are pending publications or are not available through indexed
bibliographic databases.' Currently, there are no federal guidelines for
the management of ME/CFS. This report and this public comment period are
critical because they will inform the final CDC guidelines for
management practices for patients with ME/CFS.

Read the Pacific Northwest EPC draft report in its entirety here.
https://solvecfs.org/wp-content/uploads/2021/07/2021-CDC-Draft-Systemic-Review-ME_CFS.pdf


Solve M.E. Comments Highlight Failure to Achieve Stated Goals

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.
https://solvecfs.org/wp-content/uploads/2021/08/Public-Comments-CDC-Evidence-Review-August-2021.pdf

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(c) 2021 SMCI