From a campaigning point of view I think that its Shown how our community could highlight the impact on loss of freedoms/societal participation in...
Dr Charles Shepherd said a day or two ago I asked when were the severely affected who’ve been waiting decades for assistance going to be on the...
I don’t see how switching CFS/ME to ME/CFS changes anything for the better. U.K. CFS -oxford, Fukuda or NICE criteria isn’t interchangeable with M.E.
Something lay people can comfortably be given to watch, easy to understand, engaging. Very useful.
The guideline development as a considered independent process is a separate issue to a warning about GET going out in the interim based on patient...
Didn’t she say she’d like to work with the charities? A lot of celebs like to “use” their position for good, just few have viewed our cause as...
I don’t know in terms of M.E and conference calling etc how essential this was. I mean it’s pretty devastating given how much on hold everything...
On a cheery note I just asked my Alexa to define PEM and she surprisingly said it “is one of the main symptoms of ME/CFS. PEM can be described as...
Trigger warning ## dont read if wish to avoid anything distressing People with very severe ME in terms of function are the same as the high...
This seems only about fatigue. If it is If they have Post exertion fatigue that isn’t PEM. I would be suspicious people trying to blur boundaries...
So this is another gwas study ? Is it funded ?
This isn’t really about the videos but this way of framing M.E that’s repeated often but is it accurate ? dr Nacul says “There is a chance of...
I don’t recall ever seeing medical stuff use that term alone, if an individual has that view in officialdom let’s hope we see more. I wonder if...
Maybe but seems a big departure, and to C & P they would have had to delete the ever present CFS. I wonder if it’s to cover themselves/be sensible...
ME is in a different situation to asthma or MS where this type of exercise was probably more about identifying gaps according to patients, whilst...
Anyone guess why the NHS might now be classifying ME as neurological and indeed using the term ME on its own at all when usually it’s CFS/ME or CFS. ?
Anyone know what “we need ring fenced sustained funding” actually means/will mean in real terms?
Ok but I think that having it universally called that is as harmful to the entrenched moderate and severe as it would be framing all MS as...
https://www.england.nhs.uk/ourwork/clinical-policy/ltc/our-work-on-long-term-conditions/neurological/ I’m not sure if others will be pleased or...
For those interested in the cost I found this from the write up of the shoulder surgery PSP additionally
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