[CFS-L] New American ME/CFS Guidelines (press release U.S. ME/CFS Clinician Coalition)

[Dr. Marc-Alexander Fluks]

Source: U.S. ME/CFS Clinician Coalition
Date: August 25, 2021
URL:
https://mecfscliniciancoalition.org/wp-content/uploads/2021/08/Press-Release-for-MECFS-Clinician-Coalition-article-on-clinical-care.pdf


Updated Clinical Guidance for ME/CFS may also help long COVID
patients
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SALT LAKE CITY, UTAH - Updated clinical guidance for myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), produced by the US
ME/CFS Clinician Coalition, may also help patients who remain ill with
Long COVID after even mild cases of COVID 19. NIH's Dr. AnthonyFauci has
said Long COVID is 'highly suggestive' of ME/CFS. This is not
surprising. For decades, scientists have observed a prolonged illness in
some patients following an infection. More recent research suggests 10%
or more of adults with acute COVID-19 may go on to develop ME/CFS. But
patients with ME/CFS have long struggled to access clinical care as a
result of a lack of accurate clinical guidance and provider knowledge.
The influx of so many new cases of ME/CFS has created an urgent need for
clinicians everywhere to learn about this disease.

The updated clinical guidance from the US ME/CFS Clinician Coalition
focuses on adults and includes:
* New diagnostic criteria requiring post-exertional malaise and other
key features to improve diagnostic accuracy
* Efficient use of interview questions, physical examination findings,
and diagnostic testing
* Alternative diagnoses and co-existing conditions to consider
* Pharmacological and nonpharmacological treatments
* A discussion of why previously-recommended treatments-cognitive
behavioral therapy and graded exercise therapy-can be harmful and are no
longer recommended

There are no FDA-approved treatments for ME/CFS. Indeed, few therapies
have been tested in large, randomized trials. Lacking a
disease-modifying treatment, only five percent of patients fully
recover. However, in the experience of the authors, improvement is
possible with appropriate care. This report summarizes their consensus
recommendations with a variety of available treatments.

Author Dr. Lucinda Bateman notes, 'There are many steps clinicians can
take now to improve the health, function, and quality of life of people
with ME/CFS, including those newly ill with ME/CFS following COVID-19.
This guidance may also help Long COVID patients, even if they do not
fully meet criteria for ME/CFS.'

ME/CFS is a chronic, multi-system disease that often follows a viral or
other infection, including Epstein-Barr virus and SARS-CoV-1. It affects
an estimated 836,000 to 2.5 million Americans of all ages, genders,
ethnicities, races, and socioeconomic backgrounds. The hallmark symptom
is post-exertional malaise, an exacerbation of symptoms and worsening of
function following even minor exertion. In addition, ME/CFS causes
substantial impairment in function, profound fatigue, unrefreshing
sleep, cognitive impairment, and orthostatic intolerance along with
other symptoms. Patients' neurological, immunological, autonomic, and
energy metabolism systems are impaired, leaving an estimated 70% unable
to work and 25% bedbound or homebound. Up to 91% of people affected by
ME/CFS remain undiagnosed.

About Us: The US ME/CFS Clinician Coalition is composed of ME/CFS expert
clinicians who have collectively spent hundreds of years treating many
thousands of patients. They have been principal investigators for CDC
and NIH-funded ME/CFS research, served on the Institute of Medicine and
government-sponsored committees for ME/CFS, and authored clinical care
primers for ME/CFS. Over the last year, they have been researching and
caring for people affected by COVID-19.

The article has been published in Mayo Clinic Proceedings and can be
found here.
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

An accompanying video by Dr. Lucinda Bateman can be found here.
https://www.youtube.com/watch?v=TE5HwXl1JLM


Media Inquiries only contact

Email: in...@mecfscliniciancoalition.org

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(c) 2021 U.S. ME/CFS Clinician Coalition