A misrepresented illness, More PEM, less Fatigue

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What is PEM?

PEM is a major disease process and mechanism in itself. It is what makes ME stand out as a different clinical entity.

That’s the thing. PEM is this thing completely unique to ME, no other illness has anything like it.

Even the sickest of patients can improve exertional capacity by increasing activity with any other illness. That’s what differentiates it.

As long as you’re not using a BPS definition of “CFS” there’s absolutely no chance of a depression or other psych misdiagnosis.

yeah reactive depression can cause those symptoms? but i dont get why this is important at all? ME is defined by severe functional disability and a worsening after pushing it. The rest, gastro and feeling groggy is minor complaints. So reactive depression really won’t change much, and it won’t change what limit triggers PEM, which is what defines 99% of the functional diaability.

PEM is pretty well established. There’s a whole body of literature on the 2-day CPET and how pwME are the only illness group who has an objective decline in physical function on the second day. https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test or if you prefer a cornell page to explain it https://neuroimmune.cornell.edu/research/physiology/

There’s also comprehensible irrefutable patient reported data that pwME tend to get worse when they try to push it.

I only know of two studies that tried to showing biological changes during PEM. It’s really an understudied area while we get a new study every week trying to define “fatigue” in ME

Various skeletal muscle abnormalities worsened by PEM: https://www.nature.com/articles/s41467-023-44432-3 (n=25)

Metabolic Changes when in PEM (replicated) https://www.nature.com/articles/s41467-023-44432-3 (n=25) https://pmc.ncbi.nlm.nih.gov/articles/PMC6787670/ (n=54)

The Problems with Diagnosis based on Fatigue

“Convienient” Psychological Mixups

It’s far far more common for people to have ME and think they have depression than the other way around. According to large 2023 CDC survey >90% of ME cases are undiagnosed.

Meanwhile over 60-80+% of people who have ME says they were misdiagnosed with depression/burnout/anxiety/FND

Current Situation

The vast majority of funding ends up going into “fatigue” and not PEM.

In my experience, I suffered from many symptoms after a viral infection but not fatigue. It took about 1 year and me becoming very severe for the fatigue to become noticeable.

I fit the ICC months after the virus, but it took me much longer (and becoming bedridden) to fit the IOM and CCC. I really think the BPS folks and the name “chronic fatigue syndrome” have skewered views of the disease while self-selecting for patients with more fatigue.

Diagnosis Mixups

but there’s one thing I agree. In that the few (statistically very unlikely) fringe cases where burnout or depression gets misdiagnosed as ME is having extremely harmful effects to the ME community.

Because these people tend to get better with time (as is common for burnout and depression), and they tend to associate improving their mental health with getting better. A lot of people these people then become the loudest voices pushed by the BPS movement.

David Jameson for example. He had a bout of burnout/depression in 2010. He says he never had PEM so PEM must not be part of “CFS”. (If he didn’t have PEM he didn’t have ME).

David Jameson is one of the patient testimonies on recovery norge, he owns two social media support groups with over 1’000 members selling brain retraining courses, and his wikipedia alias “sciencewatcher” practically controlled the ME wikipedia page until 2023. He also published multiple books, and a website, on his “burnout theory of ME/CFS”

Criteria Wars

and the worst part is, the people who say ME is psychosomatic are the ones specifically pushing the diagnostic criteria to be so wide it accidentally catches depression. If you look at the Oxford Criteria, or the NICE 2007 guidelines, the only symptom required is “unexplained fatigue”.

Meanwhile the criteria biomedical researchers try to push like the IOM and CCC barely even mention fatigue, they are based on PEM and require significantly disabilitty and a host of symptoms.

So what these people are arguing about are literally different clinical entities.

for example, PACE trial used oxford criteria which only requires fatigue as a symptom

If BPS/FND crowd start admitting PEM exists, they can’t use CFS as a waste bucket diagnosis for “unexplained fatigue” and they have to do quite some mental gymnastics to claim it’s not a physical disease.

So they mostly ignore it, and if they don’t they claim it’s kinesophobia (which is really far from the truth, a lot of us with ME love exercise and used to be big sporters and pushed through a lot when we first got the illness). I’m not scared of exercise. I love hiking and running, I’ce just learnt over time it has negative consequences and as a consequence have been heavily disabled

the other alternative is they claim “PEM” is just the result of deconditioning. And that we need to “start slow” hence graded exercise.

But deconditioning really can’t explain rapid declines like mine the other summer. and if it was true, then crashes would only last like one or two days and mainly be sore muscles