[Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?

You don't know anything else about them other than what's in the title.

I'll start with a few examples of what I think I'd know with 90%+ certainty:

They all have pain, fatigue, sleep disturbances and PEM (these are all required to meet CCC).
They all have been experiencing these symptoms for at least 6 months.
They all have significantly reduced functional capacity.
At least 65 of them will be women.


What else could you know?

 

A high % have been advised to start antidepressants and/or talking therapy

 

That would only be true under CCC if they were all adults (for children it's 3 months IIRC).

How about:
- They have no other conditions that could adequately explain their entire cluster of symptoms.
- They all have at least one cognitive or sensory-perceptual symptom.

I was initially going to add "no more than 25 of them will be housebound" and "a significant proportion of them will have a post-infectious onset" but I don't think I can get near 90% certainty on those.

 

Within one year, at least 50% of the women will sigh if you say “have you tried yoga/pilates/going vegan/keto/fasting”

 

Those without comorbid depression are motivated to do more than their body allows. They either fight the motivation and pace, or give in to it, then crash.

 

A significant proportion, if not a majority, will not have been given basic information on factors that need to be understood to begin self managing the condition: including PEM, pacing, sensory hypersensitivities, OI, potential food and drug intolerances, the unlikelihood of recovery for the majority, the absence of any effective curative treatments, etc.

 

I am of the opinion that besides some general demographic data we can't know too much aside from whatever the diagnostic criteria require. The NIH intermural study had many flaws, but I thought that the selection process was actually quite rigorous. Even so, in that study, 3 out of the small group of patients that were looked at in person, were found to have other diseases to blame for their issues. Also that study found that things commonly attributed to ME/CFS like orthostatic issues were certainly not present in everyone (which I found surprising). Of course there may be some common pathways or similar issues between patients, but I really do think there are different (hard to diagnose) issues going on in different people. Certainly would explain why it is so hard to get statistical significance when looking at a random group of pwME.

 

Few to none of them have severe ME because they couldn't participate in whatever research we're doing.
Almost all of them have experienced significant grief/loss related to their illness. And medical gaslighting.
Most became ill between about 15 and 35.
Almost all of them have alcohol intolerance.
Many will have a comorbid disorder like fibromyalgia or POTS.
A majority will have an infectious trigger and for many people recently diagnosed as of 2024, it will be Covid.

 

They will all be desperate to recover.

 

The CCC does have a footnote that allows for a clinical diagnosis of those who fit all other criteria and have infectious onset, but don't have significant pain(or sleep disturbance). It is rarely clear whether that is taken into account in research papers, or whether that subset is automatically excluded.

 

A very small but significant proportion will have other medical conditions that were not ruled out.

All of them will have tried some form of CBT/GET without much success. All of them will have gotten unsolicited advice to try "CBT/GET/Keto/celery juice/supplement x/diet y/medication z/antidepressants" and the majority will have even tried some of those things, especially in the beginning of their illness, not because they believed in them, but purely out of desperation.

The small percentage that eventually get better will increase their activity levels naturally. The even smaller percentage that experience remission will likely increase their activity levels naturally so much, that one could almost consider it GET.

A small portion will have a family history of ME/CFS.

A substantial proportion will have an infectious trigger and a substantial proportion will have no idea what occured to them. Especially for the latter part some partients will have waited a decade or longer for a diagnosis.

They will all be very desperate for answers that the majority of them would participate in all kinds of research independently of how gruelsome, painful or useful it is in the hope of finding some answers.

Edit: As others have pointed out you will be missing out on severe ME/CFS. More so you will also be missing out on ME/CFS in ethnic minorities.

 

In case it is useful.

"A total of 14,789 (86.6%) participants met CCC and/or IOM/NAM criteria"
Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

 

and I also think that if someone put a smart monitor on them (vs healthy people) for the week before, assuming it’s a light week they can somewhat keep near to their manageable limits ie not peak time at work

and then for the week of CPETs and after

that for the me/cfs group many would find their sleep markers would go all over the place at some point (along with other things but very hard to predict if you are mixing up severities and types).

where I hear norms apparently just ‘sleep better’ fir having done exercise.

At some point in the days following (in my past if you trigger PEM eg CPET 1 then don’t rest and re trigger if you delay onset to last exertion and have wired stuff etc) those patterns will go strange

but as people have different limits, severities, tendencies and other things on that’s all I could guarantee.

some people say they don’t eventually have a hyper sleep which by then is desperate so I’m intrigued by that different type to me at what the ‘pre-during-post PEM sleep’ would be. But I reckon there might be a sleep thing (which isn’t like the normal sleep cliche but something to do with a repair process) but also a sleep aspect OF PEM ie I often found my sleep needs were absolutely linked to what I’d done not the. Hours of the day - and no training either would override that or ever should because having been forced through that it’s clearly an essential downstream reboot type thing short term to keep you surviving (not get you healthy) that if interrupted quickly leads to disastrous results. And just gets worse and worse.

which is why I’d like to see a mild week vs exacerbated week then just see the haywire and if what people feel/experience might be heterogenous it might be different ways of interim repairing the same thing ..?