Recent Activity
Activity stream for all registered members at Science for ME.
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Lindberg liked RaviHVJ's post in the thread BBC journalist has reached out asking for more info on ME patient abuse claims.
This is one idea about how to structure it: Hi Divya! Thanks for reaching out to me. There's a lot to say about this - ME/CFS patients...
Jun 14, 2024 at 11:22 PM -
Lindberg liked DigitalDrifter's post in the thread BBC journalist has reached out asking for more info on ME patient abuse claims.
I'm very severe and can't type much but here's something I wrote back in 2018 about my experience: I was sectioned on 20th August 2014...
Jun 14, 2024 at 11:21 PM -
Hutan liked Kalliope's post in the thread Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al.
I remember dr. Lucinda Bateman said in a lecture that she asks her patients how many hours a day they have their feet on the ground.
Jun 14, 2024 at 11:19 PM -
Hutan liked trudeschei's post in the thread Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al.
This is - so far - an informal project, and a work in progress. We are not - at the moment - trying to make the perfect form. We are...
Jun 14, 2024 at 11:19 PM -
alktipping liked wingate's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
I don't have experience with the kind of chair you're looking for. I do remember seeing that @Grigor has a chair that reclines nearly...
Jun 14, 2024 at 11:17 PM -
Trish 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 14, 2024 at 11:16 PM -
oldtimer liked Joan Crawford's post in the thread Lancet - Medically unexplained symptoms explained.
Commentary re newly published? trial on MUS in the Lancet. Silje Endresen Reme https://doi.org/10.1016/S0140-6736(24)01138-3...
Jun 14, 2024 at 11:16 PM -
alktipping liked Kitty's post in the thread Annual reviews for ME/CFS.
I agree that would be absolutely ideal, but I don't think it's realistic until we have trained ME nurses. For what it's worth, I've been...
Jun 14, 2024 at 11:16 PM -
alktipping liked bobbler's post in the thread Annual reviews for ME/CFS.
yes you’ve reminded me how different it is to the last gp surgery. - I might be selling them slightly short but they seemed more focused...
Jun 14, 2024 at 11:16 PM -
Turtle replied to the thread Measuring cerebral hypoperfusion with Doppler ultrasound.
I respecfully disagree. Normally I just accept what you post, because of your vast knowledge and experience; now I disagree. I don't...
Jun 14, 2024 at 11:16 PM -
Trish liked alktipping's post in the thread Lancet - Medically unexplained symptoms explained.
they are making a rather large assumption that those patients being fobbed of with bs explanations are not going to do any research of...
Jun 14, 2024 at 11:14 PM -
alktipping liked Turtle's post in the thread Measuring cerebral hypoperfusion with Doppler ultrasound.
Great finds! 2002, 2004 and 2008 and still a long way to go. Not only in exercise, I think, but who am I? OI (also with normal BP like...
Jun 14, 2024 at 11:13 PM -
alktipping liked SNT Gatchaman's post in the thread Measuring cerebral hypoperfusion with Doppler ultrasound.
We have some older studies using near infrared spectroscopy to measure frontal lobe oxygenation, eg with orthostatic or exercise...
Jun 14, 2024 at 11:13 PM -
alktipping liked Jonathan Edwards's post in the thread Measuring cerebral hypoperfusion with Doppler ultrasound.
@Ken Turnbull , I am wondering how reliable this test is as clinical information. Novak seems to have created this category of...
Jun 14, 2024 at 11:11 PM -
alktipping liked Ken Turnbull's post in the thread Measuring cerebral hypoperfusion with Doppler ultrasound.
I was about to write to some of the researchers and ask them about the different placement of the ultrasound probes when they sent a...
Jun 14, 2024 at 11:10 PM
