[CFS-L] New American ME/CFS Guidelines

[Dr. Marc-Alexander Fluks]

Source: Mdedge.com / Medscape
Date: August 25, 2021
Author: Miriam E. Tucker
URL:
https://www.mdedge.com/rheumatology/article/244672/coronavirus-updates/new-recommendations-address-me/cfs-diagnosis-and
https://www.medscape.com/viewarticle/957241
Ref: Guidelines,

https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext


New recommendations address ME/CFS diagnosis and management
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New consensus recommendations address diagnosis and management of
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with advice
that may also be helpful for patients with lingering symptoms following
acute COVID-19 infection.

The document was published online Aug. 25, 2021, in the Mayo Clinic
Proceedings by the 23-member US ME/CFS Clinician Coalition, headed by
Lucinda Bateman, MD, of the Bateman Horne Center of Excellence, Salt
Lake City. The document is the culmination of work that began with a
summit held at the center in March 2018.

The target audience is both generalist and specialist healthcare
providers. While ME/CFS is estimated to affect up to 2.5 million
Americans, more than 90% are either undiagnosed or misdiagnosed with
other conditions such as depression. And those who are diagnosed often
receive inappropriate, outdated treatments such as psychotherapy and
exercise prescriptions. 'Despite myalgic encephalomyelitis/chronic
fatigue syndrome affecting millions of people worldwide, many clinicians
lack the knowledge to appropriately diagnose or manage ME/CFS.
Unfortunately, clinical guidance has been scarce, obsolete, or
potentially harmful,' Bateman and colleagues wrote.

The urgency of appropriate recognition and management of ME/CFS has
increased as growing numbers of people are exhibiting signs and symptoms
of ME/CFS following acute COVID-19 infection. This isn't surprising
because the illness has long been linked to other infections, including
Epstein-Barr virus, the authors noted.

The document covers the epidemiology, impact, and prognosis of ME/CFS,
as well as etiology and pathophysiology. 'Scientific studies demonstrate
multiple dysfunctional organ systems, including neuro, immune, and
metabolic, in ME/CFS. These findings are not explained merely by
deconditioning,' document coauthor Lily Chu, MD, an independent
consultant in Burlingame, Calif., said in an interview.

The document reviews the 2015 US Institute of Medicine (now Academy of
Medicine) diagnostic criteria that are now also recommended by the
Centers for Disease Control and Prevention. They are based on four main
symptoms: substantial reduction or impairment in the ability to engage
in preillness levels of occupational, educational, social or personal
activities for longer than 6 months; postexertional malaise, a worsening
of all current symptoms, that patients often describe as a 'crash';
unrefreshing sleep; and cognitive impairment and/or orthostatic
intolerance.

'The new diagnostic criteria focusing on the key symptom of
postexertional malaise rather than chronic fatigue, which is common in
many conditions, may make the diagnostic process quicker and more
accurate. Diagnosis now is both an inclusionary and not just
exclusionary process, so it's not necessary to eliminate all causes of
fatigue. Diagnose patients who fit the criteria and be alert for it in
people with persistent symptoms post COVID,' Chu said.

The document provides advice for taking a clinical history to obtain the
information necessary for making the diagnosis, including use of
laboratory testing to rule out other conditions. Physical exams, while
they may not reveal specific abnormalities, may help in identifying
comorbidities and ruling out alternative diagnoses.

A long list of nonpharmacologic and pharmacologic treatment and
management approaches is offered for each of the individual core and
common ME/CFS symptoms, including postexertional malaise, orthostatic
intolerance, sleep issues, cognitive dysfunction and fatigue, immune
dysfunction, pain, and gastrointestinal issues.

The document recommends against using the 'outdated standard of care'
cognitive-behavioral therapy and graded exercise therapy as primary
treatments for the illness. Instead, the authors recommend teaching
patients 'pacing,' an individualized approach to energy conservation
aimed at minimizing the frequency, duration, and severity of
postexertional malaise.

Clinicians are also advised to assess patients' daily living needs and
provide support, including acquiring handicap placards, work or school
accommodations, and disability benefits. 'There are things clinicians
can do now to help patients even without a disease-modifying treatment.
These are actions they are already familiar with and carry out for
people with other chronic diseases, which often have limited treatment
options as well. Don't underestimate the importance and value of
supportive care for patients.' Chu said.

The recommendations are based primarily on clinical expertise because
there are very few randomized trials, and much of the evidence from
other types of trials has been flawed, document coauthor Anthony L.
Komaroff, MD, of Brigham and Women's Hospital and Harvard Medical
School, both in Boston, said in an interview. 'The sad reality is there
aren't very many large randomized clinical trials with this illness and
so what a group of very experienced clinicians did was to gather their
collective experience and report it as that. It's largely uncontrolled
experience, but from people who have seen a lot of patients, for what
it's worth to the medical community.'

Komaroff also advised that clinicians watch out for ME/CFS in patients
with long COVID. 'If we find that those called long COVID meet ME/CFS
criteria, the reason for knowing that is that there are already some
treatments that according to experienced clinicians are helpful for
ME/CFS, and it would be perfectly appropriate to try some of them in
long COVID, particularly the ones that have minimal adverse reactions.'

The guidelines project was supported by the Open Medicine Foundation.
Komaroff reported receiving personal fees from Serimmune outside the
submitted work. Chu has no disclosures.

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