Recent Activity
Activity stream for all registered members at Science for ME.
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Sean replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Doctors have to say we don't know, we got nothing. Equally patients have to hear and accept it. And not just patients, but also their...
Jun 13, 2024 at 2:43 AM -
Missense liked Medfeb's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Posted on twitter by Jeanette Burmeister [MEDIA] Part 1 of my new 4-part article about NIH’s Effort Preference claim for ME. Read about...
Jun 13, 2024 at 2:41 AM -
Missense liked Dakota15's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Sharing this message I received today from an individual with HHS, if helpful to know for anyone still working on this here: "Our...
Jun 13, 2024 at 2:41 AM -
Missense liked bobbler's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Does it in some way avoid the ‘correlation issue’ of what is causing what given disability existed before the task —> correlation with...
Jun 13, 2024 at 2:41 AM -
Missense liked Binkie4's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Part 2 of Jeanette Burmeister's article on the NIH intramural study is posted on her blog. It is long and requires concentration to read...
Jun 13, 2024 at 2:41 AM -
Missense 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...
Jun 13, 2024 at 2:41 AM -
Sean liked Kitty's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
True, but pwME also have to be prepared for them to say, "All we can recommend is pacing." Some recently diagnosed pwME will find it...
Jun 13, 2024 at 2:39 AM -
Sean liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The trouble with that report is that it is only two families and the knock out mice had defects in multiple organ systems - i.e. not...
Jun 13, 2024 at 2:39 AM -
Sean liked Keela Too's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I think part of our problem with ME is that some medical professionals think exactly this way about ME and effectively want to shut down...
Jun 13, 2024 at 2:38 AM -
Sean liked MSEsperanza's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Apologies for just popping in -- not able to participate in the discussion but the question about what could doctors do to help people...
Jun 13, 2024 at 2:38 AM -
Sean liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
It may be difficult because, as Trish says, there is so much muddled thinking everywhere. But the first thing I would say is that 'the...
Jun 13, 2024 at 2:38 AM -
Sean replied to the thread Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+.
The finding that avoidance behaviour mediated change in several outcomes supported our theoretical fear-avoidance model on which DS-CBT...
Jun 13, 2024 at 2:37 AM -
alex3619 replied to the thread : TV casting call for people living with ME/CFS.
I did this for a while in the 80s. There is still an issue with getting to the range and back again.
Jun 13, 2024 at 2:36 AM -
Sean liked rvallee's post in the thread Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+.
They're writing a paper... about having done a study? Which is already published? Which they recognize was not statistically...
Jun 13, 2024 at 2:33 AM
