Recent Activity

Missense liked Trish's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS,...

Deanne NZ liked SNT Gatchaman's post in the thread Preprint Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al.

[ATTACH] Also:

Missense liked Nightsong's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

I suspect the majority of patients will just assume that a private specialist will be better informed, more qualified and less time-poor...

Deanne NZ liked SNT Gatchaman's post in the thread Preprint Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al.

Missense liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

The fault lies with the Drs who feel free to ridicule, denigrate, mock, to express and incite hatred towards certain groups of patients....

Missense liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

There is no excuse for such ridicule. But I can see why doctors would get fed up with patients claiming to have MTHFR mutations and...

Missense liked Sean's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

A particularly nasty and gutless form of bigotry, that is getting very close to hate crimes at times. Sometimes even crossing that line,...

Deanne NZ liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.

Have heard from Cochrane CEO and replied. Will post tomorrow

Deanne NZ liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.

I've now done this too.

Deanne NZ liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.

I decided, wearily, to respond to Cochrane as well as the fundraising regulator. "At the time of my allegation of misconduct in 2023...

forestglip replied to the thread READ FIRST: Welcome to the MEpedia subforum!.

Device is Pixel 7, which Wikipedia says is 2400 × 1080.

Missense liked RaviHVJ's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].

I"d also be fascinated to know more about "the amazing advisory group of medical doctors and researchers who worked their butts off to...

Missense liked RaviHVJ's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].

I sent a very polite email earlier this week to Dr Cefai laying out my concerns with the study - that she was studying a self-selecting...

Robert 1973 liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.

Have heard from Cochrane CEO and replied. Will post tomorrow

Robert 1973 liked Colleen Steckel's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.

While this is a very complex article covering the data, this quote sums it up nicely: "It is easy to see why the authors chose not to...