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Basically you are a real twit if you think ME is like common mild complaints a bit amplified. To start from that basis is immediately trivialising.

Not really, he’s been told by patients before and is of the BPS management approach and works with children. I think he is a "celebrity" Dr, possibly GP/ comedian / (former?) radio presenter. He was, I think, sacked from his bbc radio program for something about brexit, possibly not neutral...

It’s in total so if you had ten minutes every hour for 16 hours that’s 160 minutes 2:40 hours per day. People at high end will have possibly ten or more usable hours, people at the lower end, will be very low 0-2. Yes the level of function is difficult because useable time for someone healthy...

I think the 4 grades are on average ok. There do seem exceptions so a lady on AFME Facebook was saying she was bedridden yet did a degree fine from her bed, which is unusual but clearly defies the definitions out there. Action for ME helda twitter discussion on the number of usable hours per...

Hi jamieS I realize we Are possibly opposite ends of severity but I feel your post perpetuates the issue we have had for years as severe ME being treated as the “too difficult other”. We are not other , severe ME is a grade down from moderate, with overlaps, As moderate is a grade down from...

I i respectfully disagree. I have slid down from mild to 100% bedridden over years, starting from many years ago when ME was poorly cared for by the nhs (understated). On that awful descent I did so many highly inappropriate things because I was illmanaged. After a while each knock down from...

I think the work statistic is worth getting out more. I think that the chronic fatigue label puts in people’s mind the idea of being tired but functioning, something you live with and therefore it’s our unfortunate job whilst that still prevails to emphasise the debilitating nature, 75% unable...

If people want to use a template letter most of the charities are providing them. I personally think #MEActions is the best here, as linked above too. https://act.meaction.net/page/7340/action/1?locale=en-GB

Oh no, there’s a real problem with this short notice

I think that the worst thing they did recently when the challenge PACE research got published. They covered it with a completely biased background information section to the story totally on side of the BPS research. The problem on theirPROMGET stance we have is that they can just say we are...

I think people with expertise and being patients are powerful witnesses/sources as well as people like Jonathan Edwards, with happily just expertise. Hearing a former personal trainer like jamieson be unable to do exercise and have poor objective VO2 is compelling to skeptics. We need his type...

I was wondering if we could put forward our own expert opinions from a group of professionals we keep on a database. So when smc trot out Rona moss to show endorsement of an exercise study we issue an expert statement to the press with statements from stateticians, physiotherapists, personal...

I think that #MEAction are leading this and forward ME involved. This is where skills such as lawyers to sort out the killer arguments might help. If as many MPs as possible can really grasp sone of the big issues and failings beyond I know someone who experienced this and that, it could be...

ME Association posted on Facebook: The motion of the debate is worded as follows: “That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour...

#ME action UK replied to me on facebook with this comment: “ we are working hard to launch a tool to help you email your MP urging them to attend the debate. You'll be able to edit it to add your own language. As Carol Monaghan has been granted a debate in the main chamber of the House of...

I didn’t actually Andy, I couldn’t find that and thought it had relevance here as I was reading the FM debate transcript at the time. I wasn’t starting or continuing a thread just trying to give the quick heads up to others as time ahead is so short. I can delete it if it’s being discussed in a...

ME debate is 24th January AFME tweeted, not long to prepare and what are the aims. I will be upfront , I’m concerned it will be a debate without aims..

I guess as someone else I think said her point is we have a terrible reputation and that has to be addressed by addressing their false impressions before they will engage with us or represent us fairly. I personally think we should be burying the harassment stuff and giving it short shrift in...

I can see a merger of AFME and mea and meruk , I think it would be better and they do roughly follow the same direction on things since the PACE awfulness. Unfortunately AFMEs past makes me think MEA would want to keep separate, I think it’s fair to say the dr shepherd association wants to...

I wasn’t expecting that tbh. As someone whos been very involved following the scene I knew nothing about a video for wessely although there was general threat talk, and that was a long time ago . Ofcourse none of us excuse that but in the modern world this unfortunately isn’t unusual in...