Webinar: Implications of ME/CFS Case Definitions for Long-COVID, Dr. Leonard Jason

[ahimsa]

Webinar: “Implications Of ME/CFS Case Definitions For Long Covid”

Guest speaker: Dr. Leonard Jason

Wednesday, March 16, 2022, 4 p.m. EDT (1 p.m. PDT, 8 p.m. GMT)

Every disease has a case definition, and these entities are crucial, as they allow patients to have a diagnosis for a constellation of symptoms as well as for scientists who can research those with the illness versus those without the illness. If difficulties occur in arriving at a reliable case definition, there are serious consequences for patients, as they would then be unsure whether or not they have the illness, as well as for scientists, who might then have difficulties in estimating prevalence as well as finding biomarkers.

This has occurred for the post-viral illness that is known as ME/CFS and has already begun to occur for Long COVID. The consequences have been increased stigma for patients as to when patient heterogeneity makes it difficult to identify biomarkers, and when they are not identified, health care workers can easily attribute the condition to solely psychiatric reasons.

The relevance of ME/CFS takes on even greater importance given recent findings that a PASC anticipating risk factor at the time of initial COVID19 diagnosis is the Epstein-Barr virus viremia, which has also been associated with ME/CFS.

Full announcement - https://usawg.wordpress.com/2022/02/26/special-event/

Click here to register

 

[Andy]

My concern about how Dr Jason describes PEM in his latest publication can be seen here, Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition, 2022, Conroy, Jason et al

 

[Shadrach Loom]

Is it normal to state that ME/CFS is a post-viral condition with such certainty? If so, is it justified?

I became ill after (I think) overdoing the cardio rehab exercise after a heart attack. Someone on a different forum developed ME after a bout of malaria, which is bacterial rather than viral.

Apologies, I’m sure this discussion will have been done to death here elsewhere, and so this may not be the right thread.

 

[rvallee]

Sadly, any accurate language will probably have to wait until we have a full answer, an effort that is hindered by inaccurate language. Yay, ain't self-fulfilling failures fun?!

Ugh. Damn Catch22-Murphy disease. Now that's accurate language: no matter what you do, you are screwed, and everything went wrong.

 

[Andy]

Sadly, any accurate language will probably have to wait until we have a full answer, an effort that is hindered by inaccurate language. Yay, ain't self-fulfilling failures fun?!

Ugh. Damn Catch22-Murphy disease. Now that's accurate language: no matter what you do, you are screwed, and everything went wrong.

If you are referring to my concerns about Jason's way of defining PEM then I suggest you look at the wording being used. I don't accept that we can't do better than what he is currently using and I don't accept we should wait until we have "a full answer" before highlighting how inaccurate his definition is

 

[Peter T]

I have been pondering how to distinguish between increased fatiguability and PEM.

For me the key is that increased fatiguability is a normal but exaggerated response to an activity, which largely fits in with the descriptions cited by Jason in his definition of PEM, this is something that people with ME experience, but also people with many other conditions also experience. This is confounded in ME by orthostatic intolerance and sensory hypersensitivities that may exaggerate or even moderate the effects of increased fatiguability.

In contrast PEM is an abnormal response to activity, and pinpointing the abnormalities involved is key to developing operational definitions. The issues that are abnormal include:

• Timing, may be delayed and not necessarily reversed by rest
• Paradoxically may continue to worsen for days or even weeks after the exertion is finished
• May impact on all ME symptoms, including worsening symptoms unconnected to the trigger activity
• May include a general malaise, such as swollen glands or sore throat, headache and nausea
• May involve increase sensory hypersensitivities or orthostatic intolerance
• May increase fatiguability on subsequent days
• ?
• ?

I agree with @Andy that it should be feasible, with some work, to come up with an operation description or check list that can distinguish increased fatiguability from PEM, whilst we wait for relevant biomarkers.

 

[cfsandmore]

Don't forget WorkWell has an explanation of PEM.

 

[Mithriel]

Workwell things will be refined as we have more knowledge but they are the best attempt we have so far. At the very least they offer suggestions on things that can help and give us some tools for helping ourselves.

 

[Dolphin]

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