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How many meetings must it take for them to think them up :wtf: although it is quite useful as way of red flagging that any so called‘research’ with one of these names is definitely on the Cosmo quiz tripe model

I presume there will be some duplication of this article due to syndication. to be honest my brain is s l o w at this time of day and I saw this and thought it was Wednesday……

Joke Cosmo quiz stuff rather like BPS so called research

Yeah right how many videos were there did they cause any visual overload did people have to travel somewhere to watch them how long was the session overall Were there any rest breaks Did they have to sit up the whole time How many questions did they have to answer not rocket science that the...

Good to see plenty of push back shame it is necessary

Ah ok i reckon the two guys who do the videos - recently had Brian Hughes and Nina Muirhead on - Gez Medinger and Asad Khan seem fairly clued up and more inclusive/open to PWME than most other LC advocates so could be worth contacting but also maybe it would still be worth Carol Monaghan...

As there is an existing APPG on MECFS I doubt very much the CV group will get involved directly in any lobbying on MECFS. It would be for the Chair, Carol Monaghan to engage with Layla Moran Chair of CV group to work out how the 2 groups can best work together.

It’s a long article but worth a read I feel the writer seems to have put in the effort to understand and describe the wider context Long Covid has emerged into.

Thanks @Adam pwme ive shared this to my Facebook friends and had a couple of responses

Thanks can only blame brain fog for inaccuracies. And clearly that approach would be extremely challenging to achieve anything with so not the right one.

I feel like the fluid intake situation seems to fluctuate as much as food intake. I can go for long periods not drinking much or anything even forgetting to drink cuppas I’ve made. Then at other times I can still feel thirsty just after necking 1/2 a pint of water. Same with food either I’m...

ACT ok well on what evidence base is that being applied to people with ME? Is it even referred to in the draft guidelines?

I think a petition about research funding would best be done as a coordinated effort across ME organisations and including forward ME, And surely it should be considered that the best place to host it would be as a petition to the U.K. Parliament website hitch if reaches 10,000 signatures it has...

Yes it is depressing how difficult it is to achieve change but the point I was trying to highlight is this time it is the staff not the patients who have resigned and I’m thinking that is possibly a positive sign. unfortunately fighting the U.K. establishment for change is in many cases -...

Didn’t the patient reps resign off the 2007 review?

Good point about GPs @Kirsten i have an appointment actually in the surgery for my hypertension etc (not ME of course!!) annual review in a couple of weeks. I’m going to ask them if they are aware of DecodeME and if they will share it on their Facebook page ideally make all staff aware so if...

The content of the guidelines is a really important step in getting change to happen but we shouldn’t be under any illusions that some big switch will be flipped and NHS people working based on the old guidelines will all stop. The pro patient advocacy will need to move on to push for...