Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management, 2021, Bateman et al

Published today in the Mayo Clinic Proceedings:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Lucinda Bateman, MD, Alison C. Bested, MD, Hector F. Bonilla, MD, Bela V. Chheda, MD, Lily Chu, MD, MSHS, Jennifer M. Curtin, MD, Tania T. Dempsey, MD, Mary E. Dimmock, BA, Theresa G. Dowell, DNP, MPT, Donna Felsenstein, MD, David L. Kaufman, MD, Nancy G. Klimas, MD, Anthony L. Komaroff, MD, Charles W. Lapp, MBME, MD, Susan M. Levine, MD, Jose G. Montoya, MD, Benjamin H. Natelson, MD, Daniel L. Peterson, MD, Richard N. Podell, MD, MPH, Irma R. Rey, MD, Ilene S. Ruhoy, MD, PhD, Maria A. Vera-Nunez, MD, MSBI, Brayden P. Yellman, MD

August 25, 2021

Abstract

Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 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. Consequently, up to 91% of patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment. These problems are of increasing importance because after acute COVID-19, a significant percentage of people remain ill for many months with an illness similar to ME/CFS. In 2015, the US National Academy of Medicine published new evidence-based clinical diagnostic criteria that have been adopted by the US Centers for Disease Control and Prevention. Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS. Recently, 21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by ME/CFS. This article summarizes their top recommendations for generalist and specialist health care providers based on recent scientific progress and decades of clinical experience. There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19. Patients with a lingering illness that follows acute COVID-19 who do not fully meet criteria for ME/CFS may also benefit from these approaches.

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

The paper has been published in Science Direct in November 2021. See this post.

 

I was pleasantly surprised by how good this article is. I can't think of anything in it that I would fault. This is thoroughly researched and one I would consider very worthwhile sending to GPs and doubters. There is great detail in it and I so wish that this was what we were waiting to come from NICE.

 

Medscape New Recommendations Address ME/CFS Diagnosis and Management by Miriam Tucker

- 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.

 

short youtube video

"Dr. Lucinda Bateman, an Internal Medicine Physician from Salt Lake City, UT, reviews this consensus statement appearing online early and in the November 2021 issue of Mayo Clinic Proceedings, where the authors review the key diagnostic criteria for this debilitating post-infection condition to aid clinicians in recognizing the signs and symptoms for this hard to diagnose disease. These include impaired function, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. She notes people experiencing long COVID syndrome may double this patient population making it essential for clinicians to recognize, diagnose, and treat these patients as early as possible. Available at: https://mayocl.in/37wG94D"

https://www.youtube.com/watch?v=TE5HwXl1JLM

 

Yes, the article is very good.

However, the section on pacing is tricky: they write: "Once patients are effectively pacing without triggering PEM, some patients may be able to engage in very short periods of activity to increase their stamina. This must be individualized for the patient’s level of severity and specific triggers of PEM and must be done in such a way that it does not provoke PEM. Even for those patients who can tolerate such activity, the expected level of improvement may be small and is not seen in all patients."

Some patients are in almost constant PEM. Brushing teeth can bring it on, trying to pull on a sweater, or any other activity. For some severe patients this whole pacing business does not result in much "increase" to their stamina. Yes, they do say that level of improvement may not be seen in all patients. But pacing works for some but not for many others.

 

I don't think it's a question of whether pacing 'works' as a means of improvement rather than not-pacing can cause further deterioration.

 

How can the severe or very severe not pace? Beset by so many horrid symptoms, the body naturally slows down, lies down, sits down, and does not push--it can't with this torrent of symptoms, and then OI on top of it. My daughter used to call it the Immobilisation Treatment--after any ridiculously tiny movement, she would lie still, like a statue and wait for the symptoms to subside--though never entirely pass. I often thought of Sleeping Beauty when I would see her lie like that, alabaster white.

 

The more severe the more pacing becomes rather prioritising, deciding which of what are normally considered daily essentials are the ones necessary for survival, decisions like how long going without washing or changing your clothes makes that more important than eating or drinking something.

 

To me, this consensus statement shows an attitude of care and compassion towards PWME. This brings into stark contrast what is currently happening in the UK with the Royal Colleges and the NICE guidelines, where preventing patient suffering seems to be lost to the Royal Colleges own agenda and the interests of a few professionals.

 

A lot of this is good. Some of the pharmacological recommendations are bad and unevidenced though.

It would have been nice to hold this up as support for the NICE guideline but being full of pharmacological stuff that is uncritical does not help sell the sensible bits on non-pharmacological care.

 

I don't know, but here's a general comment from the Medscape article :

 

It doesn't work for mild or moderate either. A persons improvement has nothing to do with pacing, pacing prevents harm. A patients improvement simply occurs on its own.

 

Maybe it's the Mayo brand, because we know eminence matters, but this is the first time Cheung has made such a clear mention of ME/CFS. Cheung is technically the lead Canadian researcher on Long Covid. Technically in that there is no actual program, or funding, she's basically just the go-to expert on the issue.

I have to say I'm seeing a clear increase in prominent long haulers and some researchers recognizing the ME overlap. More obvious over the last 2 weeks or so.

https://twitter.com/user/status/1431092985752690690

 

And speaking of Mayo, hopefully the overlap also gets recognized there and Mayo stop their barbaric approach to chronic illness, or at least get on the way to it.

https://twitter.com/user/status/1431036426930561031

 

alas this change is not countrywide:

Norton Healthcare

"Treating chronic fatigue starts with getting the right diagnosis. About 90% of those with chronic fatigue aren’t diagnosed."

https://nortonhealthcare.com/news/chronic-fatigue-treatment/

@dave30th

 

Don't know who this is but many followers, journalist and MD:

https://twitter.com/user/status/1431228014432423937


Also: amazing twitter handle.

 

Trial By Error: While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS

"Two weeks ago, NICE abruptly announced that it was putting the brakes on publication of its new ME/CFS guidelines—a move precipitated by fierce opposition from key members of the GET/CBT ideological brigades in the British medical establishment. Then last week, Mayo Clinic Proceedings, a well-known journal, published a different set of ME/CFS guidelines that—like the unpublished NICE document—specifically advises against the traditional GET/CBT approach.

The article, developed by a group of specialists known as the US ME/CFS Clinician Coalition, is called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management.” The clinicians make it clear that no treatments have been shown to be curative. Instead, they focus on advice for managing and treating symptoms like orthostatic intolerance, cognitive dysfunction, pain and sleep dysfunction. That the article appears in a publication affiliated with the Mayo Clinic represents something of an ironic twist. The Mayo Clinic has been pretty persistent in offering GET/CBT-type rehabilitation approaches for ME/CFS, despite years of appeals from patients. I hope in future Mayo patients bring a copy of this article to their appointments."

https://www.virology.ws/2021/09/01/...s-publish-new-clinical-guidelines-for-me-cfs/