Recent Activity
Activity stream for all registered members at Science for ME.
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Amw66 liked Sean's post in the thread Guillain Barre Syndrome.
:( All the best to your dad and family, Snowy.
Jun 14, 2024 at 7:18 AM -
Amw66 liked Snow Leopard's post in the thread Guillain Barre Syndrome.
Yes. The time frame of ITP is different (typically develops rapidly, within 1 week of infection or vaccine) and isn't necessarily...
Jun 14, 2024 at 7:18 AM -
Amw66 liked Snow Leopard's post in the thread Guillain Barre Syndrome.
Okay, so I have previously discussed how poor recovery to Guillain Barre Syndrome often leads to severe fatigue and ME-like symptoms...
Jun 14, 2024 at 7:17 AM -
Missense 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?...
Jun 14, 2024 at 7:16 AM -
Missense 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...
Jun 14, 2024 at 7:16 AM -
Missense 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...
Jun 14, 2024 at 7:16 AM -
Missense 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...
Jun 14, 2024 at 7:16 AM -
Amw66 liked Sean'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+.
Sounds to me like what they are really saying is that it is everybody else who is inconvenienced and embarrassed by these seizures. So...
Jun 14, 2024 at 7:16 AM -
Amw66 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+.
There is an odd part in the paper that talks about how based on this, it may be better to try to make the seizures less bothersome,...
Jun 14, 2024 at 7:15 AM -
Amw66 liked Kalliope's post in the thread USA: The RECOVER Initiative - Long Covid research.
Trial by Error by David Tuller Betsy Ladyshetz on Problems with NIH's RECOVER Initiative Presentation: Science journalist Betsy...
Jun 14, 2024 at 7:15 AM -
Lou B Lou liked Sean's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
I have learned the hard way over the decades that every time I think I might be going a little too hard on the ME-is-psychosomatic crowd...
Jun 14, 2024 at 7:13 AM -
Lou B Lou liked MrMagoo's post in the thread Sense about Science: Join our talks on science, scepticism and free speech (Garner et al).
He was seen running and exercising a lot three months after his Covid, so I guess he felt great sometimes.
Jun 14, 2024 at 7:12 AM -
Lou B Lou liked MrMagoo's post in the thread Sense about Science: Join our talks on science, scepticism and free speech (Garner et al).
Just realised, I thought I saw him the other week when I was out. I wasn’t sure as it looked like him but much older. It was in fact him...
Jun 14, 2024 at 7:11 AM -
Lou B Lou liked bobbler's post in the thread : TV casting call for people living with ME/CFS.
It’s terrible if so. I’ve found the following and don’t know whether it’s this and the rehab issue or not - quite insightful to be on...
Jun 14, 2024 at 7:09 AM -
Chezboo liked Dakota15's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
@Laurie P the 4 patients that I know in the study all have POTS and said it indicated as such on the TTT testing in the study
Jun 14, 2024 at 7:08 AM
