Recent Activity

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...

Kitty 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?...

Kitty 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...

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

There will be significant variance. It's relying on the treatment journey of hundreds of people. There will likely be a lot of overlap...

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

I am interested to know how this method would work @MelbME. At present we do not know if any treatments are effective. If treatments...

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

Yes this is a large scale project that we expect to take another 2-3 years to complete. The idea is to build an initial large dataset...

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

"Personalised Treatment Trials: Monitoring and Improving the Connection of Treatments to Patients" [MEDIA] Description from YouTube:...

Kitty 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...