Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2023, Bateman et al

SNT Gatchaman

SNT Gatchaman

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Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Vernon SD, Hartle M, Sullivan K, Bell J, Abbaszadeh S, Unutmaz D, Bateman L

Background: Long COVID describes a condition with symptoms that linger for months to years following acute COVID-19. Many of these Long COVID symptoms are like those experienced by patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Objective: We wanted to determine if people with Long COVID experienced post-exertional malaise (PEM), the hallmark symptom of ME/CFS, and if so, how it compared to PEM experienced by patients with ME/CFS.

Methods: A questionnaire that asked about the domains of PEM including triggers, experience, recovery, and prevention was administered to 80 people seeking care for Long COVID at Bateman Horne Center. Their responses were compared to responses about PEM given by 151 patients with ME/CFS using chi-square tests of independence.

Results: All but one Long COVID respondent reported having PEM. There were many significant differences in the types of PEM triggers, symptoms experienced during PEM, and ways to recover and prevent PEM between Long COVID and ME/CFS. Similarities between Long COVID and ME/CFS included low and medium physical and cognitive exertion to trigger PEM, symptoms of fatigue, pain, immune reaction, neurologic, orthostatic intolerance, and gastrointestinal symptoms during PEM, rest to recover from PEM, and pacing to prevent PEM.

Conclusion: People with Long COVID experience PEM. There were significant differences in PEM experienced by people with Long COVID compared to patients with ME/CFS. This may be due to the newness of Long COVID, not knowing what exertional intolerance is or how to manage it.

PubMed | Link | PDF (Work)
 
99% with PEM, yikes. I'm sure that's skewed because PwLC + PEM are more likely to visit BHC than PwLC and no PEM or mild LC, but the high prevalence of PEM in all PwLC, and almost 100% prevalence in some cohorts, is cause for great concern.
 
Our goal was to determine if PEM was experienced in Long COVID respondents and if was similar to PEM experienced by ME/CFS patients. Since PEM is not familiar to most people, the PEM questionnaire used in this study first introduced it as “an unusual worsening of symptoms after minimal physical or mental exertion, which can occur or persist 24 hours or more after the exertion” then asks, “Do you have PEM?” All but one Long COVID respondent answered “Yes” to having PEM.
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From the introduction:
The ongoing Chikungunya virus epidemic has caused more than 10 million cases of chronic, debilitating rheumatic disease [1]
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[1] Pathak H, Mohan MC, Ravindran V. Chikungunya arthritis. Clin Med. 2019;19(5):381–5.

That's a surprising thing to lead with; that's in the first paragraph, and the first reference. I was intrigued, as we have looked at some of the reports of post-chikungunya arthralgia (click on the chikungunya tab above), and the numbers reported have been small, and the evidence of chronic rheumatic disease as a result of chikungunya a bit questionable. So, if 10 million people had been documented as suffering from this, it would be news.

That reference is interesting, but nowhere does it say that the Chikungunya virus epidemic has caused more than 10 million cases of chronic debilitating rheumatic disease. The only occurrence of the word 'million' in the arthritis paper is this, talking about the acute disease:
Since then, major outbreaks have been documented across the world and the global CHIKV epidemic from 2004–2011 affected around 6.5 million individuals.
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Numbers of acute infections don't appear to have ballooned since then. In 2022, the number of people infected with chikungunya was reported as 383,000 people. Those numbers make it more likely that there has been only around 10 million people affected by the acute disease, making the statement in the Long Covid paper very unlikely.

Why would the authors lead with this in a paper about PEM in Long covid?
 
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Abstract said:
There were many significant differences in the types of PEM triggers, symptoms experienced during PEM, and ways to recover and prevent PEM between Long COVID and ME/CFS.
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This statement is not supported by the results. The results in what are fairly small samples are amazingly similar, considering the questions were not administered in exactly the same way:
The characteristics of Long COVID respondents and ME/CFS patients are presented as descriptive statistics only since information was collected in different studies and questions were asked in slightly different ways.
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and also considering the Long Covid people haven't been sick very long.


I'm not that impressed with these authors pushing the idea that depression and anxiety is an intrinsic feature of ME/CFS, Long covid and other post-infection conditions:
Ebola virus disease survivors suffer from fatigue, insomnia, and depression
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Ebola virus disease survivors typically live in countries with minimal social welfare safety nets. They have typically lost many of their relatives. Often their homes and their personal effects will have been burned. They face a lot of discrimination, which can make it hard to find employment even if they do have enough energy to work. In such a situation, answers to any questions along the lines of 'how do you feel?' probably aren't going to be super positive.
The long term effects from the 2003 severe acute respiratory syndrome (SARS) outbreak included chronic fatigue, pain, weakness, depression, and sleep disturbance symptoms
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Long COVID respondents reported significantly more sleepiness, respiratory issues, depression and anxiety, irregular body temperature and excessive thirst than ME/CFS patients. Depression and anxiety, both associated with neuroinflammation, were the most frequent neuropsychiatric sequelae of COVID-19.
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The people with Long covid are in the earlier stages of their illness, of course they are feeling worried and upset. The data table reports the percentage for "depressed and anxious" which is rather different to "having depression" and "having an anxiety disorder". I can imagine a lot of people saying yes, to a question 'do you feel depressed and anxious about things?" when they feel rubbish, don't feel able to do all the things they used to do and are worried about paying the bills.

At least some of the authors are very familiar with ME/CFS and post acute infection conditions generally. They really should know that the evidence for depression and anxiety disorder being a core part of these illnesses is pretty weak. Given the lack of evidence, it's unhelpful to be pushing that idea. It encourages many people to think that the person has a mood problem, with appropriate first-line responses being psychotherapy and anti-depressants rather than assistance to obtain practical support.
 
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Based on the table, it appears that PEM onset and recovery is quite a bit different when comparing LC with M.E?

Could this be b/c LC pts might still be dealing with the viral load?
 
RedFox said:
99% with PEM, yikes. I'm sure that's skewed because PwLC + PEM are more likely to visit BHC than PwLC and no PEM or mild LC, but the high prevalence of PEM in all PwLC, and almost 100% prevalence in some cohorts, is cause for great concern.
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Most studies don't ask, I think only patient-lead studies did, but in the few that did it was the most prevalent symptom or issue.

Which really makes the studies that don't ask especially indicative of not paying one bit of attention to the world outside of textbooks and bureaucratic paperwork.
 
A couple of things stand out for me as problematic with this research.

First, their description of PEM is all about increases of symptoms, but there is no mention, either in the description or the questionnaire the patients filled in, of the other main feature of PEM, namely a significant reduction in ability to function for at least 24 hours. The description would seem to include what I refer to as the effects of fatiguability that happen to me during and after all activity, with effects lasting for hours, but that's not PEM if I can function at the same level on following days.

Secondly the questionnaire has ambiguities. For example it offers as possible choices PEM happening after low, medium and high physical exertion, without making it clear that you can choose all 3. So from the results, it seems that pwME are less likely to get PEM after high exertion than medium exertion, which is clearly nonsense. Some may tick all 3, others may just tick the lowest level at which PEM occurs.

From the results table: Column 1 is LC, column 2 is ME/CFS and column 3 is the p value for between group differences.
Low physical exertion 14 (18%) 33 (22%) 0.49
  Medium physical exertion 67 (84%) 108 (72%) 0.31
  High physical exertion 58 (73%) 48 (32%) <.001
Similarly for the 3 levels of cognitive exertion.

And the what you do to prevent PEM has some ambiguities too, which seem to lead to different strategies, but may be more an artefact of how we describe what we are doing.
The options for prevention are:
physical awareness (eg stay below anaerobic threshold)
pacing
avoidance (eg avoid known PEM triggers)
lifestyle (eg adjust diet, sleep hygiene)
environment (eg control house temperature)
coping [described in another section as eg prayer, meditation]
treatment (eg medications, compresssion socks)
nothing (eg not aware how to prevent PEM)
other (describe)
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So to me, for example, physical awareness is a key part of pacing, as is avoidance and lifestyle. So do I choose them all or just pacing?

Edit:
Another ambiguity:
In the section on what you do during recovery from PEM;
Light activity 21 (26%) 6 (4%) <.001
So it looks like far more pwLC use light activity than pwME.

But does light activity mean reducing from medium or high activity to light activity, ie cutting back activity, or does it mean actually trying to keep up light activity rather than resting? These are opposite strategies, not made clear. The difference may be simply a difference in interpretation of whether light activity refers to cutting back or pushing through.
 
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The paper says this about the questionnaire.

"A PEM questionnaire (Fig. 1) was administered online to people who were seeking clinical care for Long COVID at Bateman Horne Center. The PEM questionnaire was originally developed for clinical use by Bateman Horne Center providers and was used in a 2020 research study with ME/CFS patients and originally included open-ended text fields to elicit responses about PEM triggers, symptoms, recovery and prevention [9]. The same PEM questionnaire was used in this study except multiple choice responses about PEM triggers, symptoms, recovery and prevention were employed for statistical analysis. REDCap was used to administer the PEM questionnaire [12]. Only multiple choice questions were analyzed in this study."

Our thread on the previous study is here, Dissecting the nature of post-exertional malaise, Hartle et al, 2021, where there is a lot of discussion about how many of us found the questionnaire problematic.
 
Table 3

Experiences:
Respiratory % differences is interesting. Many pwLC have breathing issues and low oxygen- silent hypoxia- damages vital organs.

Recovery:
Sleep doesn't ameliorate PEM.
 
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