Solving the ME/CFS criteria and name conundrum: the aftermath of IOM, 2020, Jason & Johnson

There's significant overlap in his list with symptoms of atypical depression. I have never been satisfied with this list.

It needs to include delay, prolonged recovery and a disproportionate effect. There also needs to be recognition of physical symptoms causing cognitive problems and vice versa.

 

The cardiovascular system is not mentioned at all. Autonomic dysfunction? This is the most distressful symptom I experience. I can't stand upright, ataxia, slurring words, loss of appetite, dehydration, feeling very hot etc

 

Absolutely - my list wasn't meant to be exhaustive by any means.

If we're going to link illnesses in any way then it would be more beneficial to tease out the differences rather than just assume they're all alike. Maybe the differences in the details might tell us something, because treating them all the same clearly doesn't work.

 

I shouldn't have quoted your post. I meant Jason's PEM items, not your list. I'll edit for clarity.

 

The way even experts don't seem to know what we get is infuriating. Listen to us!

We get all the same symptoms of fatigue and post exertional problems that other illnesses do, for the same reasons. We are seriously ill and our bodies struggle all the time.

But the unique thing about ME is all the other things we get after exertion that no one else experiences. Lily Chu's paper where she got people to describe things showed this quite clearly. Other illnesses experienced similar fatigue states but people with ME had immune activation and long delays before they knew they had overexerted.

The purely ME problems may be masked in some patients especially ones who are too ill to exert very much but research should be done on those who clearly have it. That is the only way we will find out what is going wrong for us and it can then be looked for in people who are not such a clear cut diagnosis.

This has been done for things like genetic channelopathies. The genes were found in patients with classic disease but now people can be tested for the gene and diagnosed even if they have less classic presentations.

Among the many problems I have with ME being called CFS is that lots of people suffer from chronic fatigue and they should have a name for their disease. It is horrible even without being ME.

 

I'm a bit too ill to search but what does the IOM say about PEM in terms of symptoms?

I'm shocked by Jason et al's list.

 

https://www.nap.edu/read/19012/chapter/6#78

 

Thank you. Wow!!!

 

My personal experience with PEM is that the delayed physiological processes occurs after I go over my limit, but the immediate PEM occurs when my immune system is reacting by an added trigger, allergen etc but it's not as serve. Sometimes (not often) it's difficult to tell because the overdoing triggered an immune response from something that was already brewing up, and I shouldn't have exerted myself at all that day. It's tricky.

 

@Invisible Woman only people with ME understand this

 

It changed for me over time.

When first ill I would suffer PEM immediately - extreme shakes, weakness, dizziness, needing to lie down asap, and so on.

As I deteriorated from moderate to severe & I am not capable of overexertion to the same degree the delay of up to 3 days became clearer.

I think how I was managing the condition due to knowledge, or lack of it in the early years, is a part of that.

 

Listen to us! Couldn't agree more. Yet I suspect they genuinely believe they are listening to us. I recall Jason seeking feedback from the wider patient community - and that could be part pf the problem. There will be an awful lot of patients who look at his 'PEM' list and say "Yes, I have that. Great list. Thanks for all your good work." And the researchers will go away thinking they've done a good job. Except that in the case of Jason that excuse doesn't stack up. I submitted lengthy feedback (on a previous PEM study) that reflected much of the critique in this thread. Either it was never read or they chose to ignore it.

"Listen to us" may need to be rephrased as "Listen to us on S4ME".

This 'PEM' list is a bit like asking people if they ever have a headache and nausea together and, if the answer is yes, conclude that they must have migraines.

 

I know other people have said the same, about ME not being used by the medical profession in the U.K., but I have to say this isn’t my experience. My GPs call it ME, it says ME on my medical notes and Consultants from all specialties use ME when talking to me and corresponding with my GP. Am I the only one?

 

This may be true if the criteria are used literally, but the lack of exclusions was designed with clinical practice in mind so that people wouldn't end up not being diagnosed because they had another condition; with research cohorts, I expect most, if not nearly all research groups would add on exclusions. They could use similar exclusion lists to those used with other ME/ME/CFS and CFS criteria.

 

They say that patient reactions were mixed, but only give examples of negative responses; they don't give any positive responses. I recall that quite a number were mentioned in the discussion forum discussing it here:
https://forums.phoenixrising.me/forums/institute-of-medicine-iom-government-contract.114/

 

As I recall in their commentary, Jason et al decided that the 2/2 frequency and severity thresholds should be required for this CCC and ICC criteria. Not everyone would say should thresholds are required for the CCC and ICC criteria. Also it is not necessarily the end of the world if a set of criteria allow a larger group than the CCC and ICC criteria, though it could be if misdiagnosed people were included, but I don't think has been proven.

 

This study seems to have some important limitations

As the authors themselves say:

As I recall, the 2/2 severity and frequency threshold were not used for the 3 of the 4 elements of the paper that are referenced above.

The paper was also criticised by a team led by one of the IOM authors:

Also, as I believe was alluded to earlier in the thread, the definition of postexertional malaise used by Jason et al. is far from perfect. The questionnaire used was also designed for the publication of the Institute of Medicine report, so doesn't necessarily represent the definition presented for postexertional malaise in the report.

 

Leonard Jason himself found that the Fukuda et al criteria if just assessed on paper without exclusions could lead to some people with Multiple Sclerosis and most people with Lupus to be diagnosed with CFS

 

A 2019 study by the Leonard Jason team themselves found that more healthy controls were picked up by satisfying both the Fukuda et al and the Canadian criteria that the IOM criteria:

https://www.s4me.info/threads/scart...al-reduction-in-functioning.8879/#post-256301