Recent Activity

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

EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....

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

I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...

Missense liked Yann04's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

Out of curiosity what’s the issue with EDS. Isn’t it a group of genetically testable diseases — which would make the diagnosis...

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

A couple of days ago on X there was a patient dx with M.E who posted information about CCI/AAI, MCAS, EDS that received many replies...

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

Also, if they don't want us shopping for help, then get us the help we need through the proper channels.

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...