Recent Activity
Activity stream for all registered members at Science for ME.
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MrMagoo replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Once a year review in primary care is the NICE recommendation...
Jun 11, 2024 at 11:02 PM -
Laurie P liked Dakota15's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Sharing this message I received today from an individual with HHS, if helpful to know for anyone still working on this here: "Our...
Jun 11, 2024 at 11:02 PM -
alktipping liked rvallee's post in the thread Functional dyspepsia and gastroparesis in tertiary care are interchangeable syndromes with common clinical and pathological features, 2021, Pasricha.
Oh, it doesn't imply it, it means exactly that. Although there are definitions of functional that mean something closer to what it...
Jun 11, 2024 at 11:02 PM -
MrMagoo liked FMMM1's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
If a public service [NHS England] is launched then it's reasonable to ask that appropriate monitoring is included --- in fact that's...
Jun 11, 2024 at 11:00 PM -
MrMagoo liked Peter Trewhitt's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
The PACE study did do some longer term follow up. If my memory is correct wasn’t there a two year follow up, and didn’t they start the...
Jun 11, 2024 at 11:00 PM -
MrMagoo liked bobbler's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Definitely. It should be the only monitoring that counts. Particularly until we ever get past the phase where treatments and measures...
Jun 11, 2024 at 11:00 PM -
NelliePledge liked MrMagoo's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics...
Jun 11, 2024 at 11:00 PM -
jaded liked Frith's post in the thread A question about mitochondria.
Last week I had an online “Initial Appointment Group Session” with my local ME clinic, slightly behind schedule as I ‘celebrate’ 37...
Jun 11, 2024 at 11:00 PM -
alktipping liked NelliePledge's post in the thread Loss and Return of Ticklishness in Functional Neurological Disorder 2024 Coebergh, Edwards et al.
I’m definitely ok then :D:thumbup:
Jun 11, 2024 at 11:00 PM -
alktipping liked rvallee's post in the thread Loss and Return of Ticklishness in Functional Neurological Disorder 2024 Coebergh, Edwards et al.
Truly focused on what's important here. OK. Sure. How would it make sense that it's localized? If it's supposed to be a central...
Jun 11, 2024 at 11:00 PM -
alktipping liked Kitty's post in the thread Loss and Return of Ticklishness in Functional Neurological Disorder 2024 Coebergh, Edwards et al.
It'd be hilarious if still being ticklish was our get-out for being diagnosed with FND. :D
Jun 11, 2024 at 10:58 PM -
alktipping liked Creekside's post in the thread Review Peripheral to brain and hippocampus crosstalk induced by exercise mediates cognitive and structural hippocampal adaptations 2024 Blume and Royes.
It's good to see challenges to the old overly simple model of the body. I haven't noticed any discussion about exerkines being involved...
Jun 11, 2024 at 10:58 PM -
Lou B Lou 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 11, 2024 at 10:57 PM -
alktipping liked Ash's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
Umm. I know this difficulty well. It takes so much energy to try stuff and to think about it all and learn the new terminology and stuff.
Jun 11, 2024 at 10:57 PM
