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Was Dr Scott not part of a research team who published a paper recently. I think from memory that there were issues discussed here , but with 2 hours sleep I could be wrong . The trials platform proposal raised red flags for me due to the blurb on lead researcher - trained under mike...

I believe that MEAction Scotland have been in touch with the clinicians from the LC service this month ( so a fait accompli) . Elsewhere there was talk of a grant application by the LC lead to set up a platform for trials for treatments - establishing clinical support would feed into this...

a wonderful idea Per Trish's comments re wheelchair and wetroom. also ensure it has some tech. Alexa has given my aunt autonomy over many things- if things get bad it can act as intercom. ( people use alexa for baby monitoring) rooflight ( can be automated with integral black out blind) -...

Access to symptom specific specialists will be worth watching - there is now I believe 1 pots specialist in Scotland in the Highlands . Who will step into the breach - this looks like a potential pilot for PROMS and their app .... Interestingly the patient input was from English areas , who...

Again , severe at a disadvantage. It's probably zoom as covering Highlands medically is a challenge . Phonecalls potentially - audio dial in on teams/ zoom are how pwME with less capacity have contributed to research / advocacy previously .

When there's the chance to start from scratch this is what we seemingly need . MEA seems to be the go to The H4ME team met with a Scottish Health Board to discuss a new, patient-centred service for ME/CFS/LC funded by the Scottish Government. This symptom-focused service will be delivered by...

Post copied from the News from Scotland thread When there's the chance to start from scratch this is what we seemingly need . MEA seems to be the go to The H4ME team met with a Scottish Health Board to discuss a new, patient-centred service for ME/CFS/LC funded by the Scottish Government...

Thanks for this . I had hoped for better. Ever the optimist .

And yet following the sad story of Maeve Boothby O' Neill Devon and Exeter now have procedures for treating severely ill ME/CFS patients ( how good it is I do not know , but there has been some learning and changes in procedure ) . It seems that this is only Devon and Exeter specific - why no...

Excellent substack post on this by Long COVID Advocacy https://open.substack.com/pub/longcovidadvocacy/p/wessely-mendenhall-and-the-reproduction?utm_source=share&utm_medium=android&r=1d5w3s

Anecdotally autism and ADHD seem to be fairly common in child and adolescent ME/CFS - this is garnered from social media support groups ,so may not be fully representative, but certainly is worth exploring. My daughter has autistic traits but we have not pursued a diagnosis. If neural...

But do they ? We don't really have follow up studies and people adapt. Bells follow up found that few that counted themselves as recovered had full function. There are anecdotes of recovery and then relapsing in 30s We have no basic epidemiology.

A coup in the making

Are other charities aware of this ?

Having those XX chromosomes and increased risk again .....

BACME' s lack of experience shows . They will deal with mild cases , potentially those bordering mild/ moderate , over a short time span . Lack of long term follow up is a big issue and is the one metric that may be key to a fuller appreciation of the condition. They are dipping toes in water...

we really need an update of patient experience at clinics as was done for NICE review given that harms are not adequately recorded ( if at all) . If it dosn't work at clinic level then it doesn't work outwith clinics either.

This. What happens when Charles is no longer with MEA ? He has been the voice of reason on so many occasions. What comes next ? What will be funded ? The recent direction of travel is cause for concern .

Moved post From X, interesting thread 1/ New Cell paper from the team that discovered glymphatic clearance (how your brain removes waste during sleep). Sleep hours DIDN'T predict brain cleaning. Neither did REM or deep sleep. They found what actually matters - and why some sleeping pills...

Not just continue but expand