Review Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Grach et al

Wyva

Wyva

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Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID), with several studies estimating that half of patients with post-COVID syndrome fulfill ME/CFS criteria. Our concise review describes a generalist approach to ME/CFS, including diagnosis, evaluation, and management strategies.

Open access: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
 

On a quick skim, it looks pretty good. As you would expect with Jaime as one of the authors, it gets the main things right such as PEM; 'don't do GET' and making the link with Long Covid.

As with many other resources, there's a lot of recommendation of drugs and supplements for which there really is not good evidence. I think a lot of doctors just can't bear to say 'yeah, we've got nothing'. And, if you are a clinic like the Mayo, who is going to beat a path to your door and have their insurance spend big bucks if that's what you are saying?

It doesn't add anything beyond what existing resources/summary papers say, I think, and it's not a systematic review. It's more along the lines of 'this is what we reckon'. But, if it's getting the important things right, maybe that doesn't matter. Perhaps this paper will reach and convince new audiences.
 
Not too bad but the opening sentence isn't supported.

The paper said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.
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Referencing Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An IOM Report on Redefining an Illness (2015, JAMA) which is a viewpoint article written by the IOM chair in JAMA rather than the IOM report itself.

The viewpoint article said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem and often long-lasting disorder,with manifestations that can cause substantial morbidity and can severely impair patients’ health and wellbeing.
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SNT Gatchaman said:
Not too bad but the opening sentence isn't supported.
Click to expand...


The paper said: said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.
Click to expand...

Referencing Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An IOM Report on Redefining an Illness (2015, JAMA) which is a viewpoint article written by the IOM chair in JAMA rather than the IOM report itself.

The viewpoint article said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem and often long-lasting disorder,with manifestations that can cause substantial morbidity and can severely impair patients’ health and wellbeing.
Click to expand...

In medical terminology, can the Central nervous system also be referred to as a multisystem, such as Multiple system atrophy?

I’m thinking multisystem is another term for the CNS.
 
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livinglighter said:
In medical terminology, can the Central nervous system also be referred to as a multisystem, such as Multiple system atrophy?

I’m thinking multisystem is another term for the CNS.
Click to expand...

I think that MSA implies multiple neurological systems, as opposed to a single neurological system. The disease definition involves autonomic dysfunction with either Parkinsonian or cerebellar symptoms and was derived to wrap previously individually named conditions. See Second consensus statement on the diagnosis of multiple system atrophy (2008, Neurology). So it looks as if "multiple system" is being used to reference CNS and ANS (the latter having both central and peripheral components - preganglionic/postganglionic).

In contrast, the IOM report advocated renaming to "systemic exertion intolerance disease", where systemic is multi organ systems, encompassing eg cardiovascular, musculoskeletal, neurological, endocrine etc.

the committee recommends that the disorder described in this report be named “systemic exertion intolerance disease” (SEID). “Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems
Click to expand...
 
I thought the figure on PEM was helpful.

Figure 2 - PEM.jpg

For anyone who wants to post this image on social media, here's an image description I wrote that you can add as alt text (the text read by screen readers or that is shown if the image fails to load) when you post the image:
image description said:
"Post-exertional malaise (PEM)
PEM is an increase in the severity and/or the appearance of new symptoms after physical or cognitive exertion, often manifesting after a characteristic 24-hour delay. However, 12-48 hours is common. Some symptoms that may be part of PEM presentation are outlined below, with common language descriptions."

"PEM is not:
- Being more tired than usual after activity.
- Deconditioning.
- Second day muscle soreness.
- Necessarily relieved by sleep."

In the center is a diagram called "PEM symptom presentation" which is a circle broken into eight segments:

- Sensory
New or increased sensitivity to light, sounds, smell or temperature.

- Autonomic
Nausea.
Vertigo, dizziness.
Increased sighing and yawning.
Drop in core temperature.
"The shakes."
Heart pounding.

- Cognitive
Can't process words.
Trouble retrieving words.
Thinking is effortful.
"Brain fog."
Trouble starting and changing tasks.

- Pain
Headache, aches and pains.
Pain where the skull meets the spine.

- Immune
Flu-like symptoms.
Fever, sore throat.
Swollen lymph nodes.

- Neuromuscular
Muscles less responsive/non-responsive.
Feels "heavy", "leaden", like "wet concrete."
Muscles painful, burning, tingling, or buzzing.

- Energy level
A falling, pooling, or "pulled plug" sinking sensation.
In "shutdown", "locked in my body", "my battery is low", "wired but tired."

- Metabolism
Feeling "poisoned."
"Like a hangover."
Click to expand...

Image descriptions take work so I wanted to share just in case it's helpful for someone out there.

EDIT: And right after I posted I noticed several typos! Fixing now, let me know if you see errors/typos.
 
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6-minute video:
Description: Dr. Stephanie Grach, an Assistant Professor of Medicine in the Division of General Internal Medicine at Mayo Clinic in Rochester, MN, and Jaime Seltzer, Director of Scientific and Medical Outreach at #MEAction and a researcher with Stanford School of
Medicine in Palo Alto, CA, share insights from their Concise Review on the diagnosis and management of myalgic encephalomyelitis / chronic fatigue syndrome, also known as “ME/CFS.” They note infection-associated chronic illness is an up-and-coming area of
research and state it is vital that medical providers learn more about how to recognize and address this disease. The Concise Review will be appearing in the October 2023 issue of Mayo Clinic Proceedings.
Available at: https://mayocl.in/3L8Olwb



There is also a transcript at the link

https://twitter.com/user/status/1712106284399444183
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