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Me too. It's surprising to think of 5+ years of donations - it all blurs into a sort of ground hog day. I do wish we could opt out of the 'stuff'. My contributions this year had to be pretty insignificant, and I hate to think of how much the various mailings from Berkeley cost, especially...

Support Experiences of Children and Youth with ME/CFS and Epilepsy in New Zealand Schools: A Parental Perspective, 2022, Bierre (thesis)

This bit is from the discussion, and comes after a paragraph on how parents felt that mainstream schools had not been able to be sufficiently supportive: I think they are mostly talking about the Health schools here - New Zealand has three health schools that help educate children while they...

It looks as though this has been supervised by Don Baker, the psychologist at Massey who has some family experience with ME/CFS. It's good to see ME/CFS being looked at, and the issue of education management in young people with ME/CFS is an important one. I'm only up to page 9; it seems good...

Your reaction to this situation sounds entirely reasonable. It's damn difficult and I'm sad that we all have to deal with this uncertainty. Maybe exploring the clues that you have would help you feel that you have done what you can to rule out other causes of your symptoms for now? (e.g. see a...

:) Not a cast-iron certainty. But, if your doctor ordered it, maybe it's on them to find somewhere for the test to be done? It's unlikely that any exercise physio person near you will have heard of the 2 day tests. But that's ok. Because all you need them to do is the CPET test that they are...

Do you need the test for an insurance claim or something like that? Or is it to help you know whether you have ME/CFS or something else? If it's the latter, my experience might be relevant. I did a 2 xCPET as part of a study, and I showed the typical ME/CFS response. However, that has not...

Threads on the preprint and final publication have been merged

Business plan for a starting NGO supporting patients suffering from ME/CFS in the Czech Republic, 2021, Homolka

It would be fantastic if OMF systematically did small but really well designed trials of the drugs that are promoted as being helpful. Those could potentially save people with ME/CFS lots of money and effort, stop scarce research funds being wasted on poorly done studies and get rid of some of...

Both can happen, and 'more impact on research funding than petitions and lobbying' is a pretty low bar

I'm picking that a flurry of benefit claims by people with Long Covid will do more to get post-infection syndromes some useful research attention than all manner of petitions and lobbying.

There's a lot that is great in that submission, even just the fact that one was made, but also a lot that makes me want to go 'arghh!'. ANZMES is asking for $5 million/annum so that it can support patients and educate health professionals - and this is the description of 'Post Exertion Malaise'...

A Validated Scale for Assessing the Severity of Acute Infectious Mononucleosis, 2019, Jason et al There's that one where it's a bit oblique, but there is a suggestion that there is a useful treatment, and Jason undertook to query it with Katz. But I'm sure there was something else by Katz...

Long COVID and Post-infective Fatigue Syndrome: A Review - Wyller, Moss-Morris, Crawley, Knoop, Lloyd et al, 2022 A COFFI-fest.

It's interesting see Ben Katz in that list. From memory, he co-authored a study with Lenny Jason on a prospective study of EBV infection in college students. There was a media article about the study in which he made it sound as though psychological measures were associated with going on to...

Complement in the Initiation and Evolution of Rheumatoid Arthritis 2018 ? I've seen enough bad papers to know that what the title says is not necessarily right. And there's a lot of focus on incomplete mouse models of RA in that 2018 paper. Maybe the complement activation is just a downstream...

Clonal IgA and IgG autoantibodies from individuals at risk for rheumatoid arthritis identify an arthritogenic strain of Subdoligranulum Chriswell et al Abstract The mucosal origins hypothesis of rheumatoid arthritis (RA) proposes a central role for mucosal immune responses in the initiation or...

$61,105 - 95% funded

Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Oct 2022 Just a reminder that the final push for the funding of David is on - the fundraising period ends at the end of the month. I know funds are very tight for many of us...