"ME/CFS in the Long COVID World", Kenneth Friedman

[forestglip]

This PDF came up in Google Scholar. Not really sure what the context is.

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ME/CFS in the Long COVID World

Kenneth J. Friedman, Ph.D

First paragraph (with line break added):

As we begin the 2nd quarter of the 21st century, there is reason to be optimistic about progress being made in ME/CFS research and patient care. First quarter developments offer that promise: The Institute of Medicine offered physicians easy-to-use diagnostic criteria for ME/CFS, the similarities between symptoms of ME/CFS and Long COVID have been rigorously demonstrated and offer indirect proof that ME/CFS is neither an imagined or psychosomatic disease, the National Academy of Medicine offered Long COVID diagnostic criteria which are inclusive of many ME/CFS patients, and a report emerged at a recent rheumatology meeting which stated that some arthritis patients exhibit post-exertional malaise (PEM) – the cardinal symptom of ME/CFS. Used properly, these developments could move ME/CFS into the mainstream of medicine which would facilitate diagnosis and treatment of many more ME/CFS patients.

Where ME/CFS was once wrongfully characterized as “yuppie flu” or a women’s disease, or a disease which was imagined because its viral trigger could not be found, or considered by some to be a disease so devoid of physical symptoms that it could only be explained as an imagined or psychosomatic illness, those characterizations are difficult to sustain as we enter the second quarter of the 21st century.

PDF

 

[forestglip]

Also reported in 2024 is that some arthritis patients exhibit post-exertional malaise (PEM), considered by many to be the cardinal symptom of ME/CFS. [5] That PEM occurs in arthritis patients suggests either that PEM can occur in patients who suffer from non-infective disease and, therefore, PEM is not a direct consequence of infection, or that arthritis is an infectious disease. In either case, arthritis is a disease which has a well-established funding mechanism (the Arthritis Foundation) [6] and a professional medical organization which overviews patient care (the American College of Rheumatology). [7] To have PEM come under the purview of the Arthritis Foundation and/or the American College of Rheumatology holds great promise for PEM becoming an accepted symptom of disease, of it becoming a symptom of increased research, and of it being treated more aggressively by healthcare providers

[5] Applying Lessons from Rheumatology to Better Understand Long COVID, 2023, Goldenberg

It's paywalled, and nothing in the abstract about PEM in arthritis.

 

[Jonathan Edwards]

5] Applying Lessons from Rheumatology to Better Understand Long COVID, 2023, Goldenberg

It's paywalled, and nothing in the abstract about PEM in arthritis.

The paper says nothing about PEM in arthritis. I doubt it is the source of the comment 'also reported in 2024' since this paper is 2023.

 

[Jonathan Edwards]

Have a feeling that Friedman was one of the people who commented on my Qeios article.
It is not very clear what this piece is for - I guess as a political lobby exercise.

 

[forestglip]

The paper says nothing about PEM in arthritis. I doubt it is the source of the comment 'also reported in 2024' since this paper is 2023.

I thought the year was weird too, but if I go to the paper link and click Export Citation, it gives:

Goldenberg, D.L. (2024), Applying Lessons From Rheumatology to Better Understand Long COVID. Arthritis Care Res, 76: 49-56. https://doi.org/10.1002/acr.25210

And the citation from this essay is:

Applying Lessons From Rheumatology to Better Understand Long COVID. Arthritis Care Res
(Hoboken). 2024 Jan;76(1):49-56. doi: 10.1002/acr.25210. Epub 2023 Oct 26. PMID: 37525488.

But if it doesn't mention what he claims, maybe it's still the wrong reference.

 

[Jonathan Edwards]

But if it doesn't mention what he claims, maybe it's still the wrong reference.

With that confusion over date maybe it was intended as the source. It may that Friedman just saw that ME/CFS was mentioned in an American College of Rheumatology journal so thought it must be saying something about arthritis and so made the point that this was big news.

The squib is a bit damp because 'Arthritis Care and Research' is the second string journal for ACR. Arthritis and Rheumatology is the hard science journal. Arthritis Care and Research is the soft science journal - stuff that wouldn't make the main journal basically.

 

[Utsikt]

He wants to rebrand ME/CFS as a Post Active Phase of Infection Syndrome (PAPIS).

That would be a bit like rebranding lung cancer as a Post Smoking Syndrome just because smoking can increase the risk of lung cancer.

 

[forestglip]

I emailed Dr. Friedman to ask about it. He says it is in fact mentioned in reference 5. But he also referred me to this, which also says the same:

Medscape: Post-Exertional Malaise in Fatiguing Diseases: What to Know to Avoid Harmful Exercise
Miriam E. Tucker

In a study presented at American College of Rheumatology (ACR) 2024 Annual Meeting, PEM was also identified in people with various rheumatologic conditions, ranging from 4% in those with osteoarthritis to 20% in those with fibromyalgia.

For the study presented at the ACR meeting, data of people with confirmed rheumatic diseases were taken from the ongoing longitudinal US-based research database FORWARD. Participants completed biannual self-reported questionnaires during January-June 2024 that included the 5-item PEM subscale from the validated DePaul Symptoms Questionnaire.

Of 1158 individuals who completed the PEM questionnaire, 7.5% overall met PEM criteria. By individual condition, the proportions were 4.4% with osteoarthritis, 7.4% with rheumatoid arthritis, 12.2% with systemic lupus erythematosus, 13.8% with fibromyalgia diagnosed by rheumatologists, and 20.3% with fibromyalgia based on the 2016 revised ACR criteria.

Dr. Friedman also said:

In discussing the finding with colleagues, the report has been criticized as its authors did not exclude the presence of ME/CFS as a co-morbidity in these patients. As I tried to state in the article I wrote, I consider the importance of this report to be that rheumatologists (or at least some of them) are expressing interest in the symptom which means that there is a larger group of physicians who may be willing to treat it!

 

[Utsikt]

Thank you for asking, and good on him for responding.

Dr. Friedman also said:

I hope he meant ‘learn about’ or ‘study’ PEM in the last paragraph, as we have no known treatments.

Unrelated, how reliable is the DPSQ? Are there lots of false positives for fatigue?

 

[Nightsong]

I looked at this a little while ago. The Goldenberg paper doesn't say that arthritis patients have PEM (although it does claim that 1/3rd of patients with RA & OA have FM and that PEM occurs in 80-90% of FM cases!). Goldenberg considers ME/CFS, FM & LC to be central sensitivity syndromes; here's another paper of his that explains his views:

https://www.sciencedirect.com/science/article/pii/S0049017224000957

I think the paper that they may have meant to reference was "Prevalence of Post-exertional Malaise (PEM) in Adults with Rheumatic Diseases and Relationship with COVID19 Infection" (Arthritis Rheumatol. 2024; 76 suppl 9), which claims PEM in 4.4% of OA cases based on DSQ-PEM:

https://acrabstracts.org/abstract/p...ases-and-relationship-with-covid19-infection/

 

[Utsikt]

I think the paper that they may have meant to reference was "Prevalence of Post-exertional Malaise (PEM) in Adults with Rheumatic Diseases and Relationship with COVID19 Infection" (Arthritis Rheumatol. 2024; 76 suppl 9), which claims PEM in 4.4% of OA cases based on DSQ-PEM:

https://acrabstracts.org/abstract/p...ases-and-relationship-with-covid19-infection/

That paper says this:

A cardinal and putative distinguishing feature of the fatigue present in patients with Long COVID and ME/CFS from other fatiguing states is the presence of post-exertional malaise (PEM) which refers to a worsening of fatigue and other fatigue related symptoms after exertion which was previously tolerated and often delayed 24-72 hours or more1.

Their reference is Appelman, Wüst & Co, which clearly states that PEM is the worsening of symptoms, not fatigue.

It seems like the foundation for Friedman’s arguments is a bit shaky.

 

[forestglip]

Their reference is Appelman, Wüst & Co, which clearly states that PEM is the worsening of symptoms, not fatigue.

It seems like the foundation for Friedman’s arguments is a bit shaky.

I don't see why this is relevant. He referred to a study which found PEM in OA and RA. Even if they say in the study text that PEM is specifically only fatigue related symptoms, the findings are based on the DSQ, which is a commonly used measure of PEM (though DSQ has its shortcomings, but that's a different issue).

 

[forestglip]

From the Medscape article, a quote from one of the investigators in the arthritis study:

In an interview with Medscape Medical News, Calabrese said, “We recommend exercise to virtually everyone with fibromyalgia who doesn’t have ME/CFS,” but that the assessment tool used in the study, the 5-item DePaul Symptoms Questionnaire, isn’t adequate for assessing true PEM that would preclude exercise, despite being validated. “That instrument is inexact and lacks specificity…It just shows where the field is. We need better biomarkers.”

 

[Utsikt]

I don't see why this is relevant. He referred to a study which found PEM in OA and RA. Even if they say in the study text that PEM is specifically only fatigue related symptoms, the findings are based on the DSQ, which is a commonly used measure of PEM (though DSQ has its shortcomings, but that's a different issue).

Fair point! I’m not fully up to speed on the DSQ, so I can’t comment on that part.

but that the assessment tool used in the study, the 5-item DePaul Symptoms Questionnaire, isn’t adequate for assessing true PEM that would preclude exercise, despite being validated.

what’s true PEM?

 

[forestglip]

what’s true PEM?

I guess one of the definitions used by NICE or IOM:

NICE

The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.

IOM report, p. 86

PEM is a worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset.

 

[forestglip]

Unrelated, how reliable is the DPSQ? Are there lots of false positives for fatigue?

See:

And here we have a study where more "likely LC" participants supposedly had PEM than fatigue or "postexertional soreness".

Like the study from yesterday, this tells us nothing about PEM. It just tells us that the DePaul metrics being used to assess PEM are fundamentally broken.

 

[Dolphin]

This PDF came up in Google Scholar. Not really sure what the context is.

-------

ME/CFS in the Long COVID World

Kenneth J. Friedman, Ph.D

First paragraph (with line break added):

As we begin the 2nd quarter of the 21st century, there is reason to be optimistic about progress being made in ME/CFS research and patient care. First quarter developments offer that promise: The Institute of Medicine offered physicians easy-to-use diagnostic criteria for ME/CFS, the similarities between symptoms of ME/CFS and Long COVID have been rigorously demonstrated and offer indirect proof that ME/CFS is neither an imagined or psychosomatic disease, the National Academy of Medicine offered Long COVID diagnostic criteria which are inclusive of many ME/CFS patients, and a report emerged at a recent rheumatology meeting which stated that some arthritis patients exhibit post-exertional malaise (PEM) – the cardinal symptom of ME/CFS. Used properly, these developments could move ME/CFS into the mainstream of medicine which would facilitate diagnosis and treatment of many more ME/CFS patients.

Where ME/CFS was once wrongfully characterized as “yuppie flu” or a women’s disease, or a disease which was imagined because its viral trigger could not be found, or considered by some to be a disease so devoid of physical symptoms that it could only be explained as an imagined or psychosomatic illness, those characterizations are difficult to sustain as we enter the second quarter of the 21st century.

PDF

Version 2. No idea how much has been updated.
https://albanyhealthmanagement.com/.../2025/02/MECFS-in-the-Long-COVID-World-v2.pdf

 

[forestglip]

Version 2. No idea how much has been updated.
https://albanyhealthmanagement.com/.../2025/02/MECFS-in-the-Long-COVID-World-v2.pdf

I put both texts into a website to find differences. It's the exact same words, just the page breaks are at slightly different locations, and "A White Paper" was added to the heading.