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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 treated because it is severe. If I had been sent to a cardiologist sooner, then at least I would have been monitored along the way. Enter the issue of...

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. https://www.specsavers.co.uk/home-eye-tests/eligibility Have added a link to home eye tests in case it is any help.

Thank you @Jonathan Edwards I had been reading your posts about your sense of responsibility for this belief. The belief still is widespread. The doctor diagnosing hypermobility also pointed out a link. I think we have a few patients on here with mitral valve prolapse but I take your point that...

@Jonathan Edwards Just a small point. I think cardiologists/one cardiologist believes that hypermobility is linked to mitral valve prolapse. I was in hospital specialising in lung and cardiology a month ago, and being admitted by a junior doctor taking my medical history: when I got to...

@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 provided or done? Especially for ME. 2) if it were me, I might enquire.

@Trish I may be out of date but I think Social Services Departments have a responsibility ( have forgotten the Act) for assessing and fitting " aids and adaptations" for people with disabilities, and they do this via an OT assessment. I think it's a means tested service. The CAB is a pretty...

@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 own it and do I want to watch it. I want to buy a DVD for a family member. Cannot find that option.

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 beliefs was an essential part of the process but the CBT at the CFS clinic was not like this at all. I would describe it as a sort of mix between...

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 be simpler for Nice not to remove them. Arguments about them being "nuanced and crafted to give power and choice to patients" are such rubbish that...

Do we have any figures for how many OTs, physios, specialist nurses and psychotherapists are employed in the current NHS chronic fatigue clinics? It seems to me that withdrawing CBT and GET as is necessary, and using those resources for useful services for ME, would require an major interim...

@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. Sorry if it caused you difficulties.

@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 must be there?? Wonder if there is a second rep I know Invest in ME have written to Mark Baker at Nice. I don't know if they are attending. Anyone...

@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 places but they only name Clare. I filled in a note from a NICE form to ask for names of MEA reps and the other place but no response. Anyone know? I...

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 https://www.rccxandillness.com/ I came across it when diagnosed with hypermobility ( EhlersDanloss), possible Dercums ( not sure). I already have ME ( 10...

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 give up at the first view. Sometimes it could seem as if a lot of knowledge is assumed. Just ask your questions. https://www.facebook.com/groups/ME.CFS.HRM/