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Anton's update, in part: "We have not accepted the healthcare director's reply and asked him to invite us to a meeting and also give us an informed answer because he obviously isn't aware of the details. He is now questioned already by IVO because of the region's handling of Covid-19 patients...

I interviewed Holger's brother Anton and will publish on Monday -- the health director recently refused the petition -- so the possibility of forced institutionalization is still very real.

That's my fear -- the ones who only read the headlines will assume CBT is good for Long Covid. I'd prefer the title was declarative: Unlikely CBT will help Long Covid. Edit for accuracy.

Institutionally embedded disease discrimination. Impedes: research funding, attracting researchers, producing research, treatment development, medical education, physician specialization, access to medical care, and access to disability support. Promotes: harm, neglect, trauma, distrust. And...

Great job Jonathan. It must've been an energy sacrifice to write. Thanks for doing that.

Thanks for your ultra persistence in our collective advocacy ultra marathon Suzy. Are new shoes in the cards?

Google translated: The Canadian Press MONTREAL - A new test developed by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), a condition better known as chronic fatigue syndrome. L'EM is currently diagnosed primarily by...

Sounds like you're thinking that TORC1 may be chronically activated in ME? Fwiw, I'm a responder to rapamycin -- it has doubled my walking distance and diminishes and shortens my PEM.

I just recorded an interview with a Long Covid patient -- he found the PACE studies and tried GET and it made him sicker -- he said other Long Covid patients had also read PACE and tried GET -- he also talked of pacing, so we had to unpack the difference between the two. So from a marketing...

It was good to put a voice to your writings -- thanks for sharing....and the work you do @Tom Kindlon

Just in case it has any relevance to you, I remember reading an article about a woman (Jill Viles) who couldn't put on fat - she researched and found a gene -- the same gene as one of Canada's best sprinters (Olympian). Just found This American Life interview with Jill: Do These Genes Make...

Yeah, is it incompetence, or corruption? If Long Covid is not acknowledged, those patients will have challenges receiving disability from govt or corporate insurers.

It's paywalled, so only the 1st page is visible: https://www.sciencedirect.com/science/article/abs/pii/S2213219818304392?via%3Dihub

"We have presented evidence that patients with ISM exhibit a significant and intercorrelated rise in histamine and tryptase following exercise consistent with the conclusion that physical activity can induce mast cell mediator release. Furthermore, the increase in these mediators in...

Bradykinin Hypothesis for Covid Any relevance to ME? I haven't looked for Bradykinin and ME research. https://elemental.medium.com/a-supercomputer-analyzed-covid-19-and-an-interesting-new-theory-has-emerged-31cb8eba9d63

@Simon M If memory serves, Alain is involved in 5 recently funded Long Covid / ME studies - I think he said he was PI on 4 of them.

I interviewed Canadian long COVID patient Chandra Pasma - her husband has had ME for 15 years, so she knew what (not) to expect from health care and is leading the long COVID advocacy charge... https://medicalerrorinterviews.podbean.com

Just had to share that I just had a Patient Safety meeting with 4 others that work as bureaucrats in health care, and 2 of them had no clue at all that some COVID patients are not recovering -- I tried, but did not succeed, to hide my shock that people in their positions could be so clueless.

The clip ends with Garner saying "it's quite a terrifying experience".

We applied for some of the recent Covid research funding -- the executive committee is meeting in about a week so the potential Covid - ME connection should be an agenda item (if I get my way). In Ontario, MMC is part of a small team connected to one of the emergency preparedness physicians...