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Whatever happened with the previous APPG and how impressed or unimpressed people were this is a different time and a new group of MPs. Carol Monaghan is doing a good job in getting ME highlighted. I think it is right to understand that an APPG can’t work miracles but i have confidence that CM...

Admittedly wrist monitors aren’t that accurate but I’ve noticed that in mornings 8-10 when according to sleep hygiene I should be getting up it often records that I’m getting deep sleep how can that be bad for me. I know the standard normal person thing is to get deep sleep at the beginning of...

He did say he was going to be addressing MUS when he did his crowdfunding DT that is

Why am I not shocked :wtf::wtf: :wtf::wtf::wtf: these people are disgusting - what will it take to shake them out of their smug superiority complex mindset

Article from BBC on how to self isolate. https://www.bbc.co.uk/news/uk-51506729 this talk of self isolation should be taken as an opportunity @Action for M.E. @Russell Fleming to highlight to journalists the chronic isolation of people with severe ME

On Lords involvement Nicky Morgan has left the government so maybe will be able to get back involved with ME through this group. Her connections within the government party would be of use.

I didn’t have any such discussions about fluoxetine even less so about pregabalin and then Amitryptiline which were subsequently added on.

Part of the problem with these questions is they will have been written by MPs researchers who have no knowledge. If some people with ME were to come up with more challenging questions they would like MPs to ask presumably that could be shared with the APPG and they would be willing to ask them.

Was thinking exactly the same thing. I was rather frustrated by the fence sitting.

They can ask as many written questions as they like although if it’s been answered before the answer can just refer back to previous responses. The responses like replies to MPs letters are put together by junior civil servants. Interesting these have come from a shadow minister the...

I always end up flipping bedcovers off apart from lightweight quilt and feet have to stick out completely can’t be under heavy covers due to heat overall and sock pain also I don’t like the feeling of being tucked in under heavy covers. I think it’s because I probably move around quite a bit.

Should be fined for not publishing

hopefully some of the attendees at the CMRC in March will take the opportunity to ask some very direct questions of the editor https://www.eventbee.com/v/uk-cfsme-research-collaborative-6th-annual-science-conference/event?eid=105083142#/tickets

hi @Hutan this reads well to me. My only suggestion is that information to bring a new topic to a general audience is best pitched at quite a basic level of reading and understanding. You’ve got some uses of the passive voice in there and some terms where you could try using simpler words...

Yes because the person who originally put this booklet together was from a CFS clinic and consciously or unconsciously used the CFS clinic manual as the basis for this booklet. Having the charity’s document and the CFS clinic on the same lines would have reinforced the strength of the messages...

Yes and no unevidenced waffle about how sleep ‘hygiene’ helps. Getting some sleep helps if insomnia is a problem - beyond that everything is individual.

Yes indeed no doubt that as someone who was gradual late onset and had 32 year career I was in a position where I managed to get ill health retirement some snidey psychosomatic proponents would imply I’ve gained from having ME. Yeah right if they want to swap me my pension and my health for...

I don’t know from personal experience what issues teenagers have. Could be a few different reasons why adolescents don’t get picked up especially if ME isn’t severely affecting them. Poor school attendance could be put down to truancy rather than ill health. Not all kids have supportive...

Ah ok see what you mean also if eventually it is provided as NHS service people aren’t directly paying for possibly Advertising Standards would say it’s outside their remit? Ah I see they ruled against a tv ad about Universal Credit recently so remit does cover public sector ads.

I just assumed that if this deal has been announced they will now be in the process of trying to sell it to NHS commissioners not sure if that would be nationally or locally.. It won’t be launched to the public unless they manage to secure a contract/contracts.