ME/CFS and Post-Exertional Malaise among Patients with Long COVID, 2022, Jason et al

[ahimsa]

ME/CFS and Post-Exertional Malaise among Patients with Long COVID

by Leonard A. Jason and Joseph A. Dorri

Abstract

This study sought to ascertain the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID. The participants completed three questionnaires: (1) a new questionnaire measuring both the frequency and severity of 38 common symptoms of COVID and Long COVID, (2) a validated short form questionnaire assessing ME/CFS, and (3) a validated questionnaire measuring post-exertional malaise. The population was predominantly white, female, and living in North America. The mean duration since the onset of COVID-19 symptoms was 70.5 weeks. Among the 465 participants, 58% met a ME/CFS case definition. Of respondents who reported that they had ME/CFS only 70.57% met criteria for ME/CFS and of those who did not report they had ME/CFS, 29.43% nevertheless did meet criteria for the disease: both over-diagnosis and under-diagnosis were evident on self-report. This study supports prior findings that ME/CFS occurs with high prevalence among those who have persistent COVID-19 symptoms.

https://www.mdpi.com/2035-8377/15/1/1

 

[DokaGirl]

Thank you very much to these authors.

It's not surprising that there were over, as well as under diagnosis of ME.

Estimates vary re the percentage of pwLC who develop ME. If we can project from this study, out of 1,000,000 with LC, 580,000 might develop ME.
Staggering.

Medicine has taken the wrong road for decades with this biomedical disease. As a result, we only have rudimentary knowledge of ME, but no biomarker, nor effective treatments.

PwLC and ME are the most recent recipients of a long-standing system stalled by misinformation, neglect, and dismissal.

 

[Dolphin]

Among the 465 participants, 58% met a ME/CFS case definition. Of respondents who reported that they had ME/CFS only 70.57% met criteria for ME/CFS and of those who did not report they had ME/CFS, 29.43% nevertheless did meet criteria for the disease: both over-diagnosis and under-diagnosis were evident on self-report

Previous studies often find that a percentage of people who consider themselves to have long standing ME/CFS don’t satisfy ME/CFS criteria at a particular moment in time. While some may be misdiagnosed, I suspect other issues can also arise, for example:

- exclusionary diagnoses used in research (while it’s possible to have other conditions along with ME/CFS)

- the illness fluctuating so it may not be or appear so bad over a period

- a person managing their illness well so they don’t have as many symptoms

- people forgetting what normal functioning and feeling normal feels like

- people being more focused on some symptoms and less on others so they may not notice they have particular symptoms.

These categories can interact.

So the percentage of people in this cohort who have or have had ME/CFS could be higher.

 

[Sean]

- people forgetting what normal functioning and feeling normal feels like

I strongly suspect that this is what lies behind many claims of 'recovery'.

In conjunction with patients trying to both downplay it to themselves to forget or diminish how bad it really is to deal with, and (separately) to downplay it to others due to the stigma, prejudice, contempt, and outright hostility (including in the clinic) it so often attracts.

 

[RedFox]

I strongly suspect that this is what lies behind many claims of 'recovery'.

In conjunction with patients trying to both downplay it to themselves to forget or diminish how bad it really is to deal with, and (separately) to downplay it to others due to the stigma, prejudice, contempt, and outright hostility (including in the clinic) it so often attracts.

Which is why I'd never claim recovery until I was doing regular, intense exercise. Recovery is 100%, not 90%.

 

[DokaGirl]

@Dolphin

Agreed.

ME is significantly complicated. It can be difficult to sort out the symptoms, and put a ring around each one. People might miss a symptom because other symptoms are more bothersome at a point in time.

As well, physicians may need to help people articulate all their symptoms. Since most doctors don't know much about ME, this doubles the problem.

I strongly suspect that this is what lies behind many claims of 'recovery'.

In conjunction with patients trying to both downplay it to themselves to forget or diminish how bad it really is to deal with, and (separately) to downplay it to others due to the stigma, prejudice, contempt, and outright hostility (including in the clinic) it so often attracts.

I do think some pwME think they are doing better than they really are. We hope we will recover. We hope so fervently for a return to health, that we may minimize our disease, even to ourselves. But given a challenge of some sort, people may find they are not recovered.

As well, we may minimize our symptoms so as not to upset or discourage loved ones.

 

[NelliePledge]

Yes I agree symptoms are difficult to unpick. For example I knew I had to lie down on the sofa after work 5 hours sat at my table at home but as I never had any lightheadedness or falling down I also was pretty sure I didn’t have POTS. it was a slow process of understanding that Orthostatic Intolerance is broader than POTS.

 

[DokaGirl]

Yes I agree symptoms are difficult to unpick. For example I knew I had to lie down on the sofa after work 5 hours sat at my table at home but as I never had any lightheadedness or falling down I also was pretty sure I didn’t have POTS. it was a slow process of understanding that Orthostatic Intolerance is broader than POTS.

That's the thing as you said,"a slow process of understandiing".

Most of us have had to come to understand this disease without assistance from medicine. Sometimes even seeing and understanding our own symptoms eludes us.

 

[DokaGirl]

Another reason pwME may minimize their symptoms is to not complain.
"No one likes a complainer" comes to mind.

On the other hand, not articulating symptoms can also cause problems at the micro and macro level.

If pwME don't advise about their symptoms or they minimize them, those around them including medical personnel incorrectly understand this disease as much less debilitating than it really is.

In addition, if those around the pwME, including medical personnel, tend to minimize symptoms as a general rule, the scope of ME remains misunderstood for a particular pwME, and for ME in general.

ETA: altered for clarity

 

[Pustekuchen]

Of respondents who reported that they had ME/CFS only 70.57% met criteria for ME/CFS and of those who did not report they had ME/CFS, 29.43% nevertheless did meet criteria for the disease

Shouldn't the figure be 40% (78/195) instead of 29,43%? And 71,37% (187/262) instead of 70,57% accordingly?
It appears that the percentages were calculated in regard to the amount of people (not) meeting ICC, instead of the number of people (not) reporting to have ME/CFS.



Edit: correction, thank you @Dolphin

 

[RedFox]

Another reason pwME may minimize their symptoms is to not complain.
"No one likes a complainer" comes to mind.

On the other hand, not articulating symptoms can also cause problems at the micro and macro level.

If pwME don't advise about their symptoms or they minimize them, those around them including medical personnel incorrectly understand this disease as much less debilitating than it really is.

In addition, if those around the pwME, including medical personnel, tend to minimize symptoms as a general rule, the scope of ME remains misunderstood for a particular pwME, and for ME in general.

ETA: altered for clarity

I began actively resisting that tendency when I realized it existed. I refer to my condition as ME or ME/CFS exclusively. I describe it briefly as a devastating disease, or say I'm chronically ill. When I was asked how days in the past year I was unable to do my normal activities, I said 365. I never say I'm too tired to do something, but too sick, unable, or that doing it would harm me.

I basically never feel tired anyways. When you're tired you want to rest. If you wanna do stuff but lack the energy, you're sick.

I'm glad I don't downplay my illness. Even while in the middle of writing this post, I learned I forgot to pay my credit card (and paid it off late), due to my ME.

 

[Haveyoutriedyoga]

@Dolphin

I do think some pwME think they are doing better than they really are. We hope we will recover. We hope so fervently for a return to health, that we may minimize our disease, even to ourselves. But given a challenge of some sort, people may find they are not recovered.

As well, we may minimize our symptoms so as not to upset or discourage loved ones.

Totally - and that is why it is hard to feel positive. Whenever I think 'I did okay today' another voice says 'you have done 10% of what you used to, want to do'. We constantly face uncertainty and continuous, profound loss, in a way that most people cannot understand, which is confusing and lonely.

Then there's the question of 'how bad are my symptoms at the moment?' or 'how has your fatigue been lately?' and my answer is often instinctively 'not too bad, up and down, some good hours of the day and some not great' ... but that is only the answer because I haven't been overdoing the showers, meal prep or completing basic life admin. It's so confusing.

 

[DokaGirl]

Totally - and that is why it is hard to feel positive. Whenever I think 'I did okay today' another voice says 'you have done 10% of what you used to, want to do'. We constantly face uncertainty and continuous, profound loss, in a way that most people cannot understand, which is confusing and lonely.

Then there's the question of 'how bad are my symptoms at the moment?' or 'how has your fatigue been lately?' and my answer is often instinctively 'not too bad, up and down, some good hours of the day and some not great' ... but that is only the answer because I haven't been overdoing the showers, meal prep or completing basic life admin. It's so confusing.

Thank you for talking about the "continuous, profound loss". It is indeed a constant.

And the uncertainty you note. I think there are certainties, and I agree there are many uncertainties with ME.

The variability of this disease keeps us guessing. For example, how will my symptoms be after vacuuming one room, and otherwise doing a little tidying up, for this holiday season? Maybe I won't crash (PEM), and have a horrible day, but then again maybe I will. Add in vacuuming the whole house, and it is a certainty my symptoms will be exacerbated. I will be in PEM (post exertional malaise). I won't feel just tired. I will feel profoundly fatigued, weak, flu-like, etc.

Healthy people take sustainability for granted. They just assume if the whole house needs vacuuming, and the shopping needs doing, then they can just go from one activity to the next, accomplishing much in one day

PwME cannot sustain normal activities.

 

[RedFox]

This is exactly what the public needs to know about ME: It causes continuous, profound loss because pwME are unable to partake in activities that give them joy and meaning, the fact that symptoms worsen with exertion is torturous, and that the unpredictability of capabilities makes life even more painful.

 

[DokaGirl]

This is exactly what the public needs to know about ME: It causes continuous, profound loss because pwME are unable to partake in activities that give them joy and meaning, the fact that symptoms worsen with exertion is torturous, and that the unpredictability of capabilities makes life even more painful.

Very well said.

 

[DokaGirl]

In addition to whether post exertional malaise may or may not happen even after light housekeeping, the more immediate affect for pwME who have orthostatic intolerance is lightheadedness and increased feelings of malaise. This often, if not always necessitates resting supine for a period of time, even after doing light housework.

 

[Ravn]

Every time another paper from Jason's team comes out I want to scream with frustration. They're asking such important questions but then they go and use instruments that are inappropriate for the task to try and answer them. They've stirred themselves blind on their DSQ questionnaires.

I know I'm a broken record on this and I won't repeat all the issues with the DSQs here, such as the weaknesses in the questions aimed at identifying PEM, they are discussed elsewhere in detail. But I'll repeat this one core issue with the DSQs (and practically all other questionnaires used in ME) because it's a fundamental flaw in the way ME is assessed - and probably all sorts of other fluctuating illnesses, too.

The DSQs count frequency and rate severity of symptoms. Fine. This has its place but it's a limited one. For example, used longitudinally, the DSQs can provide useful information for assessing the effectiveness of an intervention. In some cases they can also be a useful initial screening tool for diagnosis - but only if the patient hasn't yet modified their behaviour, i.e. hasn't started pacing.

In this study most participants had been ill for more than a year. This means many will have figured out and implemented some form of pacing. The moment a patient is practicing pacing the main factor the various DSQs measure is how well the patient is able to pace. At this point the DSQs do not give any reliable information about the severity or even the presence/absence of ME and are unreliable for the purpose of diagnosis which is what this paper is about. A super-pacer could report zero PEM episodes and only mild-moderate symptoms in general and so remain undiagnosed but actually be severely disabled.

To be fair, on the plus side, this study gives a little more emphasis than most previous ones to some supplementary questions that appear intended to address the above problem to some degree. For example:

“If you were to become exhausted after actively participating in extracurricular activities, sports, or outings with friends, would you recover within an hour or two after the activity ended?”


“If you do not exercise, is it because exercise makes your symptoms worse?”​

It's also good they ask about function because, unlike the DSQs, this captures the impact of the illness on both pacers and non-pacers. For example:

“I can walk around the house, but I cannot do light housework”​

With this additional information Jason & team may well be able to interpret the DSQ findings sensibly (I haven't read the paper closely enough to figure out if or how they've synthesized the findings from the different questionnaires). My concern is that other research teams or clinicians without a solid background in ME just pick up a DSQ questionnaire and apply it inappropriately - e.g. for diagnosis even if their patient is pacing diligently - without realising the limitations.

 

[Haveyoutriedyoga]

In addition to whether post exertional malaise may or may not happen even after light housekeeping, the more immediate affect for pwME who have orthostatic intolerance is lightheadedness and increased feelings of malaise. This often, if not always necessitates resting supine for a period of time, even after doing light housework.

This is one of the things that gets me, but at the same time I suppose it guards against PEM because it forces me to pace by limiting my activity while I'm doing it. Also means I can hardly enjoy anything even if I wanted to risk/take PEM.

What also annoys me about questionnaires about how disabled we are is when they use 'whether the person can work' as a measure. I work, from home, full time, very flexible hours, sometimes lying on the sofa with laptop on my stomach and have held myself back a level and changed industry to make it possible. It costs me pretty much everything else and I'm housebound 6/7 days per week but the scales don't line up with that. Also means people assume that because I work I can't possibly be that unwell.

 

[Shadrach Loom]

What also annoys me about questionnaires about how disabled we are is when they use 'whether the person can work' as a measure. I work, from home, full time, very flexible hours, sometimes lying on the sofa with laptop on my stomach and have held myself back a level and changed industry to make it possible. It costs me pretty much everything else and I'm housebound 6/7 days per week but the scales don't line up with that. Also means people assume that because I work I can't possibly be that unwell.

Same. And hard agree.

 

[Midnattsol]

Which is why I'd never claim recovery until I was doing regular, intense exercise. Recovery is 100%, not 90%.

But type of exercise can matter., at least for me I would regularly burn 2x my basal metabolic rate in a remission I had a few years ago, my fitbit shows months of high, intense activity in that period. That was walking, mountain hiking and biking more or less every day. But if I tried lifting weights I would get PEM.. body weight exercises worked well though.

What also annoys me about questionnaires about how disabled we are is when they use 'whether the person can work' as a measure. I work, from home, full time, very flexible hours, sometimes lying on the sofa with laptop on my stomach and have held myself back a level and changed industry to make it possible. It costs me pretty much everything else and I'm housebound 6/7 days per week but the scales don't line up with that. Also means people assume that because I work I can't possibly be that unwell.

Been housebound a lot this winter, in summer/autumn I was in office a few days a week (shorter days, and then worked some extra hours at home).