Recent Activity
Activity stream for all registered members at Science for ME.
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Hutan replied to the thread Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al.
Introduction What nonsense - that a third of referrals from GPs to specialists is due to functional disorders and physical symptoms...
Jun 15, 2024 at 1:32 AM -
Wits_End liked Sean's post in 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 15, 2024 at 1:28 AM -
Wits_End 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 15, 2024 at 1:28 AM -
Wits_End 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 15, 2024 at 1:27 AM -
Wits_End liked Nightsong's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The times that I've used the services of private specialists, it hasn't been about managing the core features of ME. I've needed help...
Jun 15, 2024 at 1:26 AM -
SNT Gatchaman liked Hutan's post in the thread Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al.
I'm noting the different responses from forum members to this questionnaire, which is a PROM, and the MEA-funded work of Sarah Tyson's...
Jun 15, 2024 at 1:26 AM -
SNT Gatchaman liked Andy's post in the thread Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al.
Now published, Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire, open...
Jun 15, 2024 at 1:25 AM -
Wits_End liked Mij's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Admitting they don't understand M.E or that they haven't figured it out yet is not the same as dismissing the patient. I can respect that.
Jun 15, 2024 at 1:25 AM -
Wits_End liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...
Jun 15, 2024 at 1:24 AM -
Wits_End liked Solstice's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Also, if they don't want us shopping for help, then get us the help we need through the proper channels.
Jun 15, 2024 at 1:23 AM -
Wits_End liked Trish's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS,...
Jun 15, 2024 at 1:23 AM -
Wits_End liked Nightsong's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I suspect the majority of patients will just assume that a private specialist will be better informed, more qualified and less time-poor...
Jun 15, 2024 at 1:23 AM -
Wits_End liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
There is no excuse for such ridicule. But I can see why doctors would get fed up with patients claiming to have MTHFR mutations and...
Jun 15, 2024 at 1:22 AM -
Wits_End liked Sean's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
A particularly nasty and gutless form of bigotry, that is getting very close to hate crimes at times. Sometimes even crossing that line,...
Jun 15, 2024 at 1:22 AM -
Wits_End liked Yann04's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I randomly stumbled across a post in the medicine community discussion the MTHFR gene mutation, and wow, these medical professionals...
Jun 15, 2024 at 1:21 AM
