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Really well said @Mfairma ! Many thanks!

Haven't read this (have only skimmed it) Article talks about screening for ME, PEM/PESE, advising that people rest/pace. Definitions of specific conditions associated with long COVID. Terms Definitions / Diagnostic Criteria Post exertion symptom exacerbation (PESE)/ Post-exertional...

The calls are open to all caregivers. Caregivers of PwME, Long COVID and associated chronic conditions are welcome.

The Cohen Foundation is one of the funders of the National Academy of Medicine project Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors...

Another honest question - How often do PwME (and those with Long COVID) have strokes vs the rest of the population? Wouldn't hypercoagulation increase the risk of strokes and wouldn't PwME/PwLC be more likely to have strokes? Is that documented in reputable studies/articles about ME?

I would like to see a properly conducted scientific survey of PwME who have been on long-term anticoagulant therapy (due to risk of stroke, etc) and see if there's any difference in their level of function since they began it. Also would like to see if those with antiphospholipid syndrome (and...

MEAction now has 3 guides. One for adults with ME, one for parents (and pediatric healthcare workers) and one for clinicians https://www.meaction.net/resource/pacing-and-management-guide/ The Bateman-Horne Crash Guide is not concise but is pretty good and has communication cards that can be...

I believe I heard within the past 2 months that they are still working on publication(s?). But don't recall hearing anything more recent than that. Caution - attitude Data analysis takes a long time ya know. And because it's about ME, it has to be done on ME time (meaning slower than other...

Interesting discussion on this. The article came across differently to me. I understood the authors to be saying that appropriate diagnosis and careful, well thought out interventions (that seem to have had some degree of success with PwME), when done early on, have a reasonable chance of making...

The NIH institute on diabetes and kidney disease is having a workshop on post-dialysis fatigue. The email from NIH said they were hoping for input from PwME/CFS. https://www.niddk.nih.gov/news/meetings-workshops/2023/scientific-workshop-on-post-dialysis-fatigue In looking at the agenda though I...

The language in the clinician's guide is geared towards those who care for adults. For clinicians who care for children please refer them to the pediatric pacing guide (https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf) .

The language in the clinician's guide is geared towards those who care for adults. For clinicians who care for children please refer them to the pediatric pacing guide (https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf) .

I also wonder how many of his total number of patients left his practice without benefiting from his protocol and therefore aren't counted in his "recovered' patients...

The headline for the WSJ article is misleading as the level of confidence the Energy Department has in the evidence is LOW. https://www.theguardian.com/world/2023/feb/27/how-seriously-should-we-take-the-us-does-covid-lab-leak-theory

Inhofe had no problem voting against many (most? all?) forms of COVID relief (even for businesses. He has healthcare for life and a nice pension because of his time in the US Senate (and OK Senate before that). He probably also has independent wealth and connections all of which allow him access...

All of the people on the panel are authors of chapters in The Long COVID Survival Guide which is actually pretty good (IMO).

(Haven't read the study) Does the study take into account students who had to leave school/cut their courseload etc in its assessment of impact on cognition?

So according to White et al PEM shouldn't be required despite WHO, IOM (now NAM), NICE. Question - Can we compile a list of government bodies and national medical associations/bodies that clinically require PEM in ME? (To use as evidence from various countries (to White and supporting evidence...

Thank you very much

I am hoping people here can help me understand more about the microclots, anticoagulants and ME... I know people with ME who have been on anticoagulants for months to years and they've had no change in their ME (for better or worse). Not all of these people are on the same class of blood...