Recent Activity

Trish liked forestglip's post in the thread Open Medicine Foundation (OMF).

What metric(s) will you use to track how bad a patient's ME is? Edit: If it's not too expensive, maybe wearables could be incorporated?...

Trish liked MelbME's post in the thread Open Medicine Foundation (OMF).

Imagine if everyone with ME on this site had a significant work up before each treatment they tried during their journey so far and were...

Trish replied to the thread Open Medicine Foundation (OMF).

I'm liking very much your development of ways to track changes and potential for use as outcome measures. I like the mix of the three...

Lou B Lou liked Trish's post in the thread : TV casting call for people living with ME/CFS.

That is extremely concerning. I can't imagine the MEA, AfME or MEAction being so stupid. Even if they can find a member with ME/CFS who...

Lou B Lou liked Andy's post in the thread : TV casting call for people living with ME/CFS.

Action for ME on Twitter, "We have been made aware of & understand the concerns relating to the Electric Robin Docu Series & its...

bobbler liked Kitty's post in the thread Annual reviews for ME/CFS.

I agree that would be absolutely ideal, but I don't think it's realistic until we have trained ME nurses. For what it's worth, I've been...

Aaron posted a new thread.

BBC journalist has reached out asking for more info on ME patient abuse claims

I’ve been Tweeting alot about Wessely and his involvement in the Ean Proctor case and last night a BBC journalist and documentary...

Forum: General ME/CFS news

Aaron posted a new thread.

BBC journalist has reached out asking for more info on ME patient abuse claims

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Forum: General Advocacy Discussions

Trish liked forestglip's post in the thread Open Medicine Foundation (OMF).

That's a really good idea. I've always hated trying to track my symptoms with just a 1-10 because two months later, I'll almost...

HolyScrod liked csinclair02's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.

One has to wonder what it would have been like to be a fly on the wall at NIH. I can't imagine that Nath likes working with Walitt. But...

Kitty liked forestglip's post in the thread Open Medicine Foundation (OMF).

That's a really good idea. I've always hated trying to track my symptoms with just a 1-10 because two months later, I'll almost...

Kitty liked MelbME's post in the thread Open Medicine Foundation (OMF).

It's not the features, it's the way they are tracked. We have the problem of reliability of a symptom experience being accurate based on...

Kitty liked forestglip's post in the thread Open Medicine Foundation (OMF).

FUNCAP seems like a pretty good way to measure. (S4ME thread about it) [MEDIA] Very cool about the Activpal! Too bad it looks like...

Kitty liked MelbME's post in the thread Open Medicine Foundation (OMF).

Do you mean how they feel? FUNCAP looks the best to use right now because it captures the patients prediction of their functional...