Recent Activity
Activity stream for all registered members at Science for ME.
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Wits_End liked Kitty's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
Forgot to mention this. It's not the rolling—it's things like whether you can get your head at just the right angle to be comfortable,...
Jun 15, 2024 at 1:46 AM -
SNT Gatchaman liked Hutan's post in the thread Measuring cerebral hypoperfusion with Doppler ultrasound.
I'm pretty sure though that the orthostatic intolerance in my children and I started at the same time as all the other symptoms. And so...
Jun 15, 2024 at 1:35 AM -
SNT Gatchaman liked rvallee's post in the thread Webinar: USA: National Academy of Medicine: New Definition Proposed for Long COVID, June 11, 2024, 1 PM EDT.
It's a recognition that COVID can cause a huge number of health issues, some of which are syndromes or even single symptoms. Which...
Jun 15, 2024 at 1:34 AM -
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
