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Perhaps my brainfoggy self misspelled my email address. Oh well…

Did the email work for you. It’s been 15 minutes and crickets on my side.

Après J20 Association de COVID Long, is looking for volunteers. * Volunteer legal adviser * Volunteer administrative Helper * Volunteer social science (of long COVID) writer https://bsky.app/profile/apresj20.bsky.social/post/3ld2jwjjn7k25

Maybe the type of person who prioritises career ambition instead of truth. I mean it takes a lot of that type of thinking to get into such a prestigious position has his. Maybe he didn’t want to stir up any drama within his field or within the NIH, to benefit his career , so he let Wallitt run free

compare that to the 18’000 CHF per year disabled people (unable to work) who were disabled before getting their first job get. Very unfair system.

Article in Swiss state news about people with Long COVID (and PEM) going bankrupt because of disability waiting times. (translated from french)...

Authors: Thomas Plum Thorsten B. Feyerabend Hans-Reimer Rodewald Abstract: Mast cells are regarded as effectors in immune defense against parasites and venoms and play an essential role in the pathology of allergic diseases. More recently, mast cells have been shown to receive stimuli derived...

Found this thread by Sabrina Porter on bluesky and though worth sharing. For rest see: https://bsky.app/profile/sabrinapoirier.bsky.social/post/3lcxcph4iec2l Thought she made some really good points. Except for the unproven mast cell and brain inflammation stuff at the end.

So their reaction to the widespread criticism was, we need to use up pwME’s donations to improve our image and hire people for “communications”? Instead of oh shoot we’re not really representing the people we claim we are, we need a shakeup?

Random but related https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patients-a-sustainable-business-model.html (this is from 2018)

From a Propublica Reporter on Bluesky https://bsky.app/profile/phoebepetrovic.bsky.social/post/3lcv4desaas2v Would be really cool if the experiences of pwME (especially severe) were included in this article.

Last day to Respond to the NHS Health Research Authority Inclusion and Diversity Guidance informal consultation https://www.hra.nhs.uk/about-us/news-updates/help-shape-our-new-inclusion-and-diversity-guidance/

I thought your reply to Ruud Raijmakers was especially well done. Thank you for writing it.

Same. But long COVID includes a group of people who probably follow that trend in the first few years where they have an ME/CFS like illness and spontaneously recover. What pre-COVID was called “post-viral fatigue syndrome”.

Damn. If I don’t get bad fatigue from PEM, does that mean I don’t fit the IOM anymore?

There’s probably a severity bias in who gets diagnosed. And also, with the majority of doctors in the healthcare system, having an ME diagnosis basically at best is an equivalent of having no diagnosis, at worst an equivalent to having a “psychosomatic disease” diagnosis.

According to Tom Kindlon on bluesky the person who published this study has a significant Conflict of Interest.

Cool. Unfortunately my problems not long term fatigue, but an illness defined by PEM.

It seems to be a sort of consistent report that for some “strong” drugs tried, a significant subset of ME patients report a worsening of their condition linked to a sort of allergic looking reaction.

Does it say how long after exercise the cognitive testing was done? Because if I overexert myself, I get a bout of what feels like adrenaline and my cognitive function doesn’t decline until the adrenaline (or whatever) wears off and PEM hits the next day. Edit: Hmm it seems they had a test...