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Is there not a potential danger that the Long COVID patient will never have their PEM recognized - or even their ME/CFS - and then be told to go out and exercise and be harmed as a result? Yes, it's possible that a doctor could diagnose PEM and then fail to recognize that the person actually...

All of the historical records coded with R53.82 since the ICD-10-CM was implemented in 2015 will never be remapped to the G93.3n group. That is exactly why US advocates fought repeatedly to get CFS reassigned from the symptom chapter, where the US unilaterally moved it, back to the G93.3...

I am looking for articles discussing the use of the Chalder instrument. I've found this public comment submission on Chalder to NIH's ME/CFS CDE initiative. But I thought I remembered a publication on it as well. If so, does anyone have a link to that? Or am I misremembering that?

The items in the R53 section are fairly narrow conceptually - malaise, fatigue, malignancy related fatigue, weakness, and functional quadriplegia. IMO, PEM doesn't fit in with this group of symptoms.

I apologize for the length of this post. Hopefully it responds to your concerns but let me know if not. You are correct, sleep issues are not in the symptom chapter. My mistake. They are listed in the “Factors influencing health status and contact with health services” or the nervous system...

Yes, I've read that. These statements align with the proposal. People with Long COVID can have the symptom of PEM but not have a diagnosis of ME/CFS. So the PEM symptom code can be - and I'd say should be - used in their medical record And PEM is a core part of ME/CFS so PEM should not be...

The only definition used in the US that did not require PEM was Fukuda. But the IOM called for Fukuda to no longer be used clinically and since 2017, the IOM criteria has been adopted and incorporated widely into clinical medical education in the US. There is no separate clinical criteria or...

So the difference is that organizations with members submitted this proposal, not two individuals. Is this what all organizations do? Not take any action until they have first put it out to all members for consultation and a vote?

This proposal does not include an explicit excludes2 between PEM and G93.32. And it would be wrong for such an excludes to be established in the future specifically because PEM is by definition a core part of ME and can't be excluded from it. Of course, mistakes can be made but it seems...

@Dx Revision Watch You and I had submitted a proposal for ME and CFS in ICD-11 without first consulting with the community on what we were proposing. Once it was submitted, the community could see our proposal and make comments on it. How is this different from what we did then, given that NCHS...

Thanks for posting, @SNT Gatchaman Related - In this Jan 30 Washington Post article, NIH's Avi Nath discusses his interest in the role of endogenous retroviruses in triggering illnesses such as ALS, MS, and Alzheimer. His interest arose after seeing ALS disappear in a patient who had taken...

Good point. And the inclusion and exclusion criteria of the study do not mention consideration of PEM/PESE. So they could have a mixed cohort of people who experience PEM and people who don't. Could complicate study interpretation on their primary and other outcome measures

Great idea. I wonder what the authors mean by "submaximal exercise response (CPET)." The 2-day CPET studies typically use the respiratory exchange ratio (RER) as part of determining when to stop the exercise. RER is the point at which the body is producing energy anaerobically as shown by...

Yes. Thank you for this, @Peter Trewhitt. And beyond presenting pacing as a cure, this is true even when it's presented just as a therapy that can lead to improvement in quality of life, function, and/or burden of symptoms. It lacks the nuanced explanation for practitioners, such of the...

I agree with @Trish. Stuffing ME into a bucket of medically unexplained chronic fatigue is going to end up harming people with ME for the reasons she notes. Unlikely to get the care they need and too likely to be harmed One nuance here - CDC does provide quite a bit of "guidance" on the care...

I totally agree the diagnostic process for chronic fatigue must consider conditions that could be causing it. But I'm not clear why only ME/CFS would continue to be subsumed inside the chronic fatigue pathway while MS and those other conditions would have their own pathways.

I think we are well past that point. We may not know the exact etiology and how all the strands of research fit together. And we need more studies/replication - using well-characterized cohorts. But IMO, there's substantial research evidence across multiple systems of an abnormal response to...

Thanks for posting, @Tom Kindlon What's especially frustrating is that this group knows all the issues - outcome switching, high bias, unblinded trials with subjective outcomes, nonspecific criteria, etc. They are the same group that conducted the 2014 review and the 2016 reanalysis that...

Yes, you are correct that CDC has acknowledged it and I have followed up to request it be corrected. No response yet but I continue to ask. As an aside, I don't know if they have a mechanism to fix between their update cycle in October.

At least in the US ICD-10-CM, the instructions for coders specify that ME/CFS and LC should both be coded if applicable The entry for ME/CFS (and ME and CFS - G93.32) includes the explicit instruction to "use additional code, if applicable, for post COVID-19 condition, unspecified (U09.9)."...