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Why don’t the b******* listen

Interesting generally there’s also information about comms actions including getting information out to all GP surgeries and buying ad space on the waiting room screens @Russell Fleming in his role as head of comms

Yeah circadian is restricting you might have some level of energy most days like me but if you’ve got your best level for the day available for a couple of hours from 2am you can keep on top of indoor stuff like washing clothes, the dishes, shopping delivery orders. but it’s no use for getting a...

The medical profession in general though but not the entire medical profession

Wow @Dakota15 like it was too much effort for them to copy the text into the email and much easier for a PWME to use their energy tracking down the relevant bits. Has a flavour of Sharpe’s penchant for telling people to “read the paper” rude

PWME have a bigger challenge accessing health care generally, so many being bed and housebound. Also symptoms due to cancer, heart and vascular can be misattributed to ME and not addressed as soon as a healthy person might. I believe that there was some research by Jason about mortality. Also...

It’s interesting that as many as 100k people actually have Icd 93.3 diagnosis given the reluctance to use it and the MUS crowd teaching Drs to treat symptoms instead

Great work by your group :thumbup::thumbup:

Open letter to Health Ministry in Les Echos from professors in France about the Long Covid/ post viral situation there. Refers to people getting ME Via Millions Missing France FB sorry no capacity for an English summary...

Agreed

Except in practice you’re not likely to get diagnosed until you’ve lost capacity and once that’s the case it’s not assisted suicide it’s euthanasia. My parent had severe dementia for many years in their 60s and early 70s. I struggled with this issue as I knew their wishes but would have risked...

I’m on hypertension medication and my bp is managed. I only use paracetamol and very occasionally cocodamol as I didn’t do well on pregabalin amitryptiline both too sedative I need paracetamol when I wake up to help take body aches down to a level where I can manage ok. I don’t know what...

Weaknesses in the questionnaire Militant thinking creeping in :D

They do have history of providing evidence that is useful to be fair the PACE paper showing nobody returned to previous levels of work and more were receiving benefits being the one that sticks in my mind. Not so useful in validating their own hypothesis

Chalder being an author is not associated with useful output this may be due to behavioural factors :whistle:

I’ve never heard of anyone making a hasty decision about resigning or retirement due to ME and doubt it’s any different with LC. More likely feeling pressure to return quickly due to financial situation needing to keep up with rent payments. also pressure will come from managers. Many...

Right having a somewhat tweaked CFS clinic isn’t complying. Notably i doubt there’s any ICB that’s in compliance with NICE guidelines as far as severe ME

I’m surprised it’s that many

Bumping this again as some may have missed @Adam pwme request for help tracking down an item from ME Assn magazine.

It’s a very fair point @Yann04. The activity in UK health department also really only came about through connection of the minister to a family member with ME/CFS