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The petition has now reached 16,000

I agree it is a bit difficult to separate out physical/orthostatic from cognitive exertion. I’ve definitely had numerous occasions of PEM from working at home. This involved sitting for 5 hours,with short breaks, at my table working on laptop and dialling into meetings, audio as 10 years ago...

He’s not even original is he Next he will be showing photos of mocked up messages using cut up newspapers Using someone accidentally dropping a coffee cup at a seminar as ‘evidence’ of harassment Or claiming to have had to send a cease and desist letter

Good to get a meeting with the actual responsible minister in the current government. I think all the dealings since Sajid Javid moved on from Health Secretary have been at official level. I I was a junior official a couple of decades ago in a team where we had a couple of meetings to brief...

Seems entirely focused on rehab people steering/directing patients

Yeah of course- they’re the “experts” after all :whistle:

Gosh what a revelation - not

The only time I noticed any comments being written about me were when soon after my parent who had years with very severe dementia died I decided I wanted to stop taking fluoxetine as the worry had been lifted. I had to go back a month later to confirm and then a couple of follow up...

I sent a link to my counsellor (also a practitioner of person centred counselling) she said she agrees with everything Dan wrote.

I have delayed sleep pattern. On a quiet day not involving exertion over and above basic living activity I feel worst on waking and for a couple of hours until I get up. I often feel best, particularly cognitively, in the couple of hours before going to sleep. I think this is the opposite of...

Meaco air circulator fan is very quiet on lowest setting, it has a separate vertical rotation and horizontal rotation settings so can create a lot of air movement. When we’ve had the very hot for uk spells Kitty mentioned I use the physio gel packs which come in different sizes. I freeze them...

Maybe you could contact 25% Group, Helen Baxter to see if they are aware @Kiristar

Lord Bethell https://www.gov.uk/government/people/lord-bethell-of-romford

Using their bureaucracy to make it go away.

Annual review for hypertension used to be an appointment with the GP when I first started on medication 20 years ago. Now it is self checking bp am/pm for 7 days and sending the numbers in to the surgery. They are reviewed by GP then the healthcare assistant is delegate to have the appointment...

They probably are being too professionally polite but they definitely deserve a chunk of credit for putting pen to paper on this

Interesting to see if it picks up whether participants are affected by orthostatic intolerance.

We know the APPG on ME is planning to do a report on severe/very severe this year. Probably a good question for this meeting would be to ask whether people with severe/very severe Long Covid with ME type symptoms are experiencing the same difficulties accessing care and nutrition as people with...

Cheers for your help like many here I only ever experience Reddit through posts here and even then I don’t go beyond the actual post. I’m not a fan of Reddit or acronyms

Ok thanks I have never heard of that before