Recent Activity
Activity stream for all registered members at Science for ME.
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Yann04 liked RaviHVJ's post in the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
I think this is the politically smart response to the paper - skate over its conclusions and serious flaws, and use it to call for...
Jun 2, 2024 at 8:57 PM -
Amw66 liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Every pwME's efforts at pacing is a research exercise carried out by the pwME as we navigate every day's activity and rest. All I'm...
Jun 2, 2024 at 8:57 PM -
NelliePledge liked JemPD's post in the thread Animal research for ME.
I find the idea of animal models at this stage, to be grossly unethical and at best a waste of time. there is no such thing as an...
Jun 2, 2024 at 8:57 PM -
Amw66 liked JemPD's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I completely agree, but the challenge is that Sarah Tyson... IS a patient. And the mother of another patient. Russell Fleming is a...
Jun 2, 2024 at 8:56 PM -
Yann04 liked Tom Kindlon's post in the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
Very disappointing: $8M NIH study used some of the very broad and inappropriate thresholds* that are part of the Reeves et al (2005)...
Jun 2, 2024 at 8:56 PM -
NelliePledge liked Jonathan Edwards's post in the thread Animal research for ME.
I think it much more likely that it was very sensible and that a new generation of researchers will repeat the mistakes of the 1970s and...
Jun 2, 2024 at 8:56 PM -
Amw66 liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
People with other chronic conditions such as asthma and diabetes are self monitoring and recording data on apps which help both with the...
Jun 2, 2024 at 8:55 PM -
Jonathan Edwards replied to the thread Open Medicine Foundation (OMF).
Hi @MelbME. Is saline beneficial? Standard physiology would suggest that the chances of saline infusions being more use than drinking a...
Jun 2, 2024 at 8:54 PM -
JemPD replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I am right that Keith is a patient arent I? just suddenly had a moment of doubt but dont i remember that Wessely etc discounted his...
Jun 2, 2024 at 8:53 PM -
Amw66 liked Adrian's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
My point though is more that the use of trackers. AI really enables very different interfaces and ways to interact so its not just say...
Jun 2, 2024 at 8:53 PM -
Yann04 replied to the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
This is the second time that Nath has alluded to the demoralizing effect that attacks can have on researchers. (The first had to do with...
Jun 2, 2024 at 8:53 PM -
Amw66 liked Lou B Lou's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I'd say predictably those comments have fallen on deaf ears. Nothing has moved on from 'the therapist knows best' and 'the rehab...
Jun 2, 2024 at 8:53 PM -
Amw66 liked NelliePledge's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Yes Adrian some of us have flagged up that use of trackers should be considered and there are symptom tracking apps like visible (which...
Jun 2, 2024 at 8:53 PM -
NelliePledge liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
They surely will have seen our letters and are free to read this thread.
Jun 2, 2024 at 8:51 PM -
Yann04 replied to the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
Health Rising (Court Johnson) just released a piece on the study and it’s findings. While I think parts of it were well written, I was...
Jun 2, 2024 at 8:51 PM
