Search results

This is just an additional paper from CDC's multi-site "MCAM" study, initiated in 2011. It's typical of CDC to dribble out papers from their studies - at least the ME studies - over many years. Maddening especially given the incredibly narrow scope of its goals. I'm surprised that so few met...

Of course. I was not saying there weren't. But redefining PEM as "feelings of discomfort" and then virtually ignoring PEM is a pretty big problem and the choice of method to identify PEM is just one facet of that problem.

The question of whether PEM was present or not is a nuanced one. They note the cases were adjudicated by experts and the supplemental data said all 17 pwME met IOM criteria BUT They used the CDC Symptom Inventory to evaluate symptoms. The question for PEM in that tool is "unusual fatigue after...

In the Discussion, they say: "Moreover, testing of effort preference and the participants’ own words are consistent with this finding [on central and peripheral fatigue]. Together these findings suggest that effort preference, not fatigue, is the defining motor behavior of this illness...

Immunoglobulin can be prescribed to people with common variable immune deficiency (CVID), which is diagnosed by specific biomarkers. This can include the patient's immune response to a vaccine. US patients can't get this expensive treatment covered without meeting these tests Some people with...

This looks very useful. One question - I tried using this to score a severely ill patient I know and wasn't sure how to address the cumulative effect of multiple activities in a day. So for instance, they can't do multiple things at the same time (toilet and brush teeth) - they have to rest in...

I've been collating a list of ME/CFS provocation studies and there aren't many studies with cognitive challenges. Here's one evaluating autonomic and behavioral changes (e.g. sleep, physical activity) following cognitive or physical challenges. They said they didn't see a difference between the...

In case it's helpful In case it's helpful, here's a transcript of Dr. Griffin's discussion on the Appleman paper Edited to replace the link with the actual PDF

Excellent discussion of the article.

Yes, I am. Also the differences that group found between severely and moderately ill patients with both having mitochondrial impairments but only the severe having glycolytic impairments. Then there's Systrom's studies showing an impairment in O2 extraction peripherally Yes, this lack of...

But doesn't the evidence suggest an impairment in energy metabolism? For instance, just a few of the studies... 1. Komaroff and Lipkin. Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome...

just skimmed, but looks interesting. Thanks for posting, @Jaybee00

Yes, I agree we have a huge problem with those who want to equate PEM as just fatigue after exertion and then dismiss the whole concept of PEM. But I just think we could miss an important nuance if all early symptoms are automatically deemed "not-PEM." Regarding DSQ My comments above were only...

I see those differently - I think those early symptoms that show up upon overexertion are part of the PEM complex and that if a patient can recognize these early warning signs, they may be able to shorten the duration or severity of the resultant PEM. That's the point of Workwell's timecourse...

Good to hear. Looking forward to seeing that. I'd also include worsened functioning in addition to worsened symptoms and maybe that PEM severity is out of proportion to the triggering stressor another useful reference is the NIH CDE description of PEM - compiled from the IOM, CCC, and ME-ICC

It could simply mean clinicians who care for people with ME in their medical practice. Lily Chu is on the IAG and is an MD but she does not have a clinical practice so is not "working with patients" in that sense.

Thank you, @NelliePledge

The BACME document states "BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services" Does anyone know what that project is and whether any UK patient organizations are involved?

Preliminary meant just that. We don't have proper epidemiological studies yet. But we do have some studies that show people with Long COVID meet ME/CFS criteria and we know people with Long COVID are being diagnosed with ME/CFS. Documenting that connection in medical records through ICD codes...

My comment was only referring to those LongCOVID research studies that have evaluated ME/CFS criteria in Long COVID cohorts. The numbers are all preliminary and vary but some studies have found as many as 50% of the Long COVID patients met ME/CFS criteria.