Interesting@Justy. This is where I go back to PEM which I have severely, so I regard my primary diagnosis as ME. But the mitral valve has to be...
Am sorry you are so unwell @Wonko, and then to have all this piled on top. Wishing you the very best in getting it all sorted out....
Thank you @Jonathan Edwards I had been reading your posts about your sense of responsibility for this belief. The belief still is widespread. The...
@Jonathan Edwards Just a small point. I think cardiologists/one cardiologist believes that hypermobility is linked to mitral valve prolapse. I...
@Trish I know you don't live in Tower Hamlets @Trish . Just an example of what can be done. EDIT:1) crossposted with above. Who knows what is...
@Trish I may be out of date but I think Social Services Departments have a responsibility ( have forgotten the Act) for assessing and fitting...
@Joh, or anyone, help please How do I buy a DVD copy of Unrest? I have bought it on Amazon prime and when I go onto Amazon, I am immediately told...
I had CBT at a NHS chronic fatigue clinic but it was not proper CBT. I have had experience of CBT ( nothing to do with ME) where challenging...
If GET and CBT are to be abolished for pwme, as they should, it will still require significant reorganisation as an interim measure. It may just...
Do we have any figures for how many OTs, physios, specialist nurses and psychotherapists are employed in the current NHS chronic fatigue clinics?...
@Barry My comment was meant as a light joke at a time when subsets were spinning round my head after discussion of the ME and CFS nomenclature....
@Trish You've added in another subset. We need criteria. Not sure you can just choose.
@Barry You've got me worried. While we're thinking of subsets, are all women "ladies"? So who gets to critique this? No wonder I don't sleep.
There are links to two further letters, the reply from Mark Baker, and counter reply from IiME, on the front of the letter in the previous post.
Thanks @Andy Have just been checking the charities' fb pages re the NICE meeting. AfME statement is as above: there wasn't one on MEA page. CS...
@Andy-do you know if AfME is sending a patient rep to the meeting, or is Clare Ogden the only representative? I think stakeholders were allowed 2...
I am not quite sure about posting this, firstly because I don't have the understanding or language to explain it, but I can post a link...
What a magnificent donation! Well done @Cheesus, and all who played a part.
Me too. Thanks@Joh
P If anyone is inclined to try this I would suggest they look at the fb HR monitoring site. There is so much information there. Just don't...
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