Leonard Jason research finds that many young people have ME/CFS (Simon M blog)

My humble opinion is that we urgently need some reliable diagnostic testing.

 

I understand this and hear it often, but apart from the obvious role in advancing the research and dealing with ignorance, I am not sure if a biomarker should be as important as it is. Parkinson's doesn't have a biomarker.

Put otherwise, we have decent diagnostic criteria available. The real problem in terms of diagnosis is medical ignorance. The scientific gains are a separate discussion that should be irrelevant to an application of science, otherwise known as medicine.

 

I see your point. However, Parkinson's does not have a test but there are extensive tests which are done before such a diagnosis. (I believe the actor Michel J Fox outlined how he was tested in the book he wrote about his diagnosis. )With ME there are some issues; there seem to be overlapping conditions, fibromyalgia, lyme, Ehlers (sometimes). There is no reliable testing for these conditions, and we have to differentiate them. I know several young people who are designated as having ME, yet they look remarkably different except for the very severe ones, who are bed bound. (On the Ehlers front, a have a good friend whose daughter was diagnosed with Ehlers; they did all sorts of genetic testing. However, now a year later, they are saying she doesn't have Ehlers, but has borderline personality disorder!) All this looks problematic to me. And many folks with ME were told by Kenny de Meirleir they had Lyme. It's just not clear cut enough in my humble opinion. And whenever you have foggy things like this, lots of quacks turn up with 'solutions.'

 

I hear what you're saying, but my instinct is that there is more clarity than first glance. Agreed, there are some symptoms in common with illnesses you mention and many more mainstream ones also. An obtuse example is that my mother in law tires me, but she's not ME...

PEM is a major distinction, for example, as is post trauma onset, usually being post viral, but sometimes other systemic trauma. Plus a basket of other typical symptoms that are necessary. That's a pretty unique diagnostic bucket from what I can see, however much it might be sliced up one day.

Misdiagnosing as Lyme, or vice versa, seems largely an ignorance issue to me, much the same as psych confusion. EDS is basically just extreme malign i.e. non-benign hypermobility, and that can fatigue you. But that's not ME PEM, it's fatigue from the physical toll of extreme hypermobility. But of course having any hypermobility is a known comorbidity of ME, but it's doesn't mean you have ME if you don't meet the decent criteria for ME. It needs that anaerobic mess of PEM to be ME.

Sure EDS might make one more ME prone, if there is an as yet undefined role of collagen in being MEed or maybe even general fatigue wears down the predisposed with hypermobility, etc and makes them 'crack into' ME. Who knows, yet...

But, I agree, a biomarker will be nice. I also worry a biomarker may catch some of the pwME basket though and not others, for some as yet unknown reason.

 

Medical ignorance of diagnostic criteria also opens the door of market opportunity and lack of consequential discipline for snake oil salespeople too

 

What definition does the Levine/Hanson paper use? If there is a pre-catastrophe stage that expands the group size. I'm sorta fond of the kindling/developing idea, but actually have no reason to believe it happens in any particular % of cases, or even exists at all. But, uh, it feels true, doesn't that count? ;-)

If the ME/CFS means even half the degree of dysfunction I'm familiar with, it makes full time work with a 40 or ever 35 hour week impossible. Even most part time work is impossible, because one can't be reliably functioning at a specific time. .85% of adults being disabled due to a mostly unknown cause, that sounds high.

TL: DR. I have no hard data, but the 7/8th % figure doesn't match casual observation. If there were that many, everyone would have either a friend or an immediate relative of a friend who is disabled with this.

 

http://www.virology.ws/2020/02/25/t...nard-jasons-study-of-us-pediatric-prevalence/

 

PEM is not a crash with exercise, though that often happens. It is an exacerbation of symptoms with physical or mental exertion and a response to that exertion which is abnormal and not intuitive - walking can cause brain fog, doing the accounts can interfere with walking, and so on.

The weird episodes you talk about are common in full blown ME and are due to overexertion but the delay of up to 3 days (or more) can mask that. It all depends on which parts of the body are most affected.

 

I only ever see 24-48hr delay written about, which always seemed misdescribed. It should be described as the minimum delay range

 

For some people PEM can hit immediately, for some if can take up for3 days, or can vary. So the same person at early onset might experience it differently as time goes on or as their severity level changes.

When I was newly ill and diagnosed as moderate - within the first couple of years - PEM could happen during activity or within hours. Decades later and categorised as severe it takes up to 3 days.

I wonder if the difference is that in the early and moderate years I just didn't realise I was in constant PEM.

 

My PEM manifested when I started exercising again after being ill with (PVFS) for 5-6 years. In my case, PEM was very distinctive and not slow onset. The mental PEM or cognitive issues also started after exercising.

 

That's why a scoring system can be helpful. I keep harping on about the Bansal score chart, but I think it's useful for this reason.

You can have immediate PEM, provided that it's still prolonged, but it then requires you score more strongly on the other symptoms (clear sleep dysfunction, OI, flu-like symptoms, etc) to meet the threshold.

Whereas someone with the most obvious PEM (delayed over 24 hours, prolonged) only needs dysfunctional sleep, one symptom of brain fog and fatigue to meet the requirement.

Really, it's the combination of symptoms that helps confirm the diagnosis. PEM is crucial, but you want those other symptoms to be clear.

 

Is there a copy in the library @adambeyoncelowe? I had a look under PEM and Questionnaires and Scales threads and didn't spot it. Would be a useful addition, I think.

Completely agree, you can't just take PEM but need to see the whole symptom list.

 

It's here: https://me-pedia.org/wiki/Bansal_Score_Chart_for_ME/CFS

 

Thanks.

I'll ask about adding it to our library.

 

Great. It's pages 25-26 of this report.