BBC: How Long Concussion could offer new insights into Long Covid

Yes, exactly. She doesn’t have any of those, she’s just knackered.

 

I think there is this specific thing in PEM and ME where if you are in PEM not only your symptoms are worse, but your physical capacity for retriggering more PEM/a worsening of baseline (capacity) and more symptoms is lowered. Which I think is pretty unique to ME, but unfortunately not described much in the literature.

This is where the “worsening of illness” and not only worsening of fatigue comes in if that makes sense.

 

My younger daughter has EDS, POTS and suspected ME and her responses to overexerting herself are *exactly* like mine - immune response, flu-like symptoms, excessive fatigue, aches and pains, brain fog etc. My elder girl doesn’t have any of that at all, she’s just tired. She doesn’t show any symptoms that are congruent with an ME diagnosis.

 

Yes, this is exactly how I’d describe it too, thank you!

 

Well, my daughter could teach that idiot a thing or two - she’s about as fit and active as she could be and *still* struggles with what is now lifelong PCS. She works at a stable two days a week, and plays hockey on a third. But she can’t do both on the same day and still needs the rest of the week to recover from the activity she does on the other three. She’s lived with this for ten years now and this is about as good as it gets for her, and she’s also had two brain surgeries on top of the PCS to deal with the tumours they found during the initial CT scan after her head injury, but that’s a whole other story….

 

This seems very ambiguous. It doesn't say flu-like symptoms are required, just giving it as an example. So exacerbated cognitive issues should fit too.

I just did the ICC criteria questionnaire and did not fulfill it, probably because I don't have enough of the various other symptoms: "immune, gastro-intestinal and genitourinary impairments" and "Energy production/ion transportation impairments". While I easily fulfull the IOM criteria.

 

Maybe you fulfill the atypical ME criteria in the ICC? @forestglip

They have criteria for ME, and then also “atypical ME” which requires less symptoms.

 

I’m not sure the SGME’s version of the questionnaire have atypical ME.

Here is another version that includes it if you’d like:
https://d3n8a8pro7vhmx.cloudfront.n...nal/1478717636/ICC_Questionnaire_Nov_2016.pdf

 

I guess maybe. Gastrointestinal, probably, because food feels very heavy and takes a long time to digest. "Intolerance of extremes of temperature" maybe? When I'm really tired I'll shiver when it's not that cold.

And unless unrefreshing sleep counts as "sleep disturbance", then I'm one of the "rare" ones, because I don't have any significant sleep issues. At least since I stopped using a phone at night. I used to not be able to fall asleep until like 4 am, then I realized the light from my phone was keeping me up, and I blacked out my whole room, and I sleep fine now.

With those two, it should be enough for atypical.

It's all very confusing.

 

I think that counts as mild sleep disturbance.

If it helps you, when I first developed ME, my symptoms were only PEM and IBS. Not even fatigue, so I wouldn’t have fulfilled any criteria. Over time I worsened, and now I’m at the point that I check every single box in the ICC.

I’m not saying this will happen to you (hopefully not), but using it as an example that when you are on the milder end of the spectrum, you will probably see less symptoms than the average patient.

 

Quick view of the wide variety of criteria:

 

That’s a cool graph, you can really see how at first it was a fairly specific condition, than BPS pressures reframed it as a general fatiguing condition (the Oxford criteria by Sharpe being the worst; but Fukuda and 2007 NICE being up there), and more recently it’s gotten somewhat more specific and PEM has mostly replaced fatigue as the defining symptom.

 

There is a difference between prolonged fatigue and fatigue with a delayed onset.

 

Yeah, I know, I wasn't speaking about her case there. But if someone presented with simply fatigue that appeared two days after exertion but no other symptoms, I'd think that should still be PEM, as I don't know of any other delayed fatigue conditions.

These criteria mostly feel very arbitrary and I like the trend that seems to be happening to simplify them. When barely anything usable for patients is known about ME/CFS, how can anyone say "PEM + fatigue + immune, gastro-intestinal and genitourinary impairments" is one condition, but if you remove the last part, it's something totally different?

Have they found significant fundamental differences (other than relating to the symptom that is different) between these groups? Or have they shown that a certain treatment works for the former but not the latter? I don't think so, so it seems they're prematurely excluding people just based on what might be the most common presentation.

 

To be fair as far as I know the ICC was mostly intended to be very strict so it could minimise the number of people in studies who did not have ME. I think in that sense it is usually used for research and less in clinical medicine.

 

That makes sense, to be as sure as possible everyone's similar, but for clinical, and maybe even for research, purposes, I'm not sure the criteria should even be more than just: "ME/CFS is the symptom of exertion intolerance without a known cause."

I don't think they've shown that exertion intolerance in ME vs. post-concussion syndrome vs. fluoroquinine exposure vs. whatever else has a different biological basis.

So it seems they're just arbitrarily gathering the most common symptom presentation into one thing. But there's so much variety in symptoms within even this group (even the ICC criteria only requires one or more out of multiple completely different symptoms for one or two of the categories) who's to say that if you have zero of these symptoms, it's something fundamentally different.

There may well be various different subtypes of this "exertion intolerance" - maybe drug exposure vs. head trauma vs. infection. Or maybe they're all the same, just presenting differently because it's only one symptom in some other condition. Maybe the exertion intolerance in MS is the same fundamentally in the brain or mitochondria, and it just presents a little differently because of what the specific cause in that case is.

My point is mainly advocating for the population. For ten years, before I'd heard of "chronic fatigue syndrome" I thought I just had the weirdest, rarest depression that didn't respond to exercise, therapy, or any antidepressant and I was left alone and no researchers or doctors were likely going to make this weird depression a priority or know what to do. When I found out about ME/CFS, it finally felt like I had hope because there are millions of others fighting for a cure.

Then I see the ICC criteria and get diaheartened - like "am I on my own again because I don't have genito-urinary symptoms or whatever?"

So for all the people that just can't do exercise, and get tired for days with no known cause, I don't think, at least clinically, there's any reason they shouldn't get the same diagnosis, if science hasn't shown that these people with fewer symptoms are fundamentally different.

 

That's not the impression I get from IOM criteria. It seems that at a minimum it only requires increase of fatigue, unrefreshing sleep (which is barely a separate thing, as @Hutan said elsewhere, something like "if my arm is still broken after sleep, does that mean I have sleep issues"), and cognitive dysfunction or orthostatic intolerance.

And NICE doesn't even include the OI.

 

I believe there's a very strong reason to remain adamant to precisely not be doing this. ME/CFS, from what I've understood, has nothing to do with tiredness after exertion.

Post-Exertional "MALAISE" is suppose to capture this with the word "malaise" which is suppose to capture the feeling of being ill. That is entirely different to feeling fatigued or tired. If being tired was the problem people with ME/CFS would just go to sleep for a couple of hours or days.

Pushing ME/CFS as being "tired after exertion" is precisely what the BPS narrative has accomplished and is precisely what the problem has been.

Whether or not ME/CFS is one entity and whether or not there are conditions that are similar that somehow could share some underlying similarities is an interesting question, albeit a different one. PCS fits precisely into that narrative, it seems similar but it does appear to be very different from ME/CFS, at least symptomatically, which is the only thing we can really go by when defining these conditions.

In this very lengthy discussion various people have tried to discuss what they experience when they talk about PEM and how it should be measured and defined. I found it quite enlightening.

Softening "PEM" to any sort of worsening after exertion or tiredness after exertion is rather dangerous for research and patients. Unfortunately, far too loosely using the term PEM, is already happening amongst LC patients and researchers. It's been rather detrimental to all sides.

 

All sides except the people still left out if the term is strict - left to get bulldozed by BPS theories.