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Just to say I was admitted to hospital again last week just for a day for another condition. Obs were taken routinely ( I make sure not to watch because I have a white coat hypertension and it makes it worse) and towards the end of the day, I was asked if I usually had trouble with O2. It was...

https://www.facebook.com/OpenMedicineFoundation/ Open Med Foundation fb page is collecting lots of comments

So grateful. Thank you Pineapple Fund.

@Sly Saint That may have been the one I read a couple of years ago. Now I'm on a largish red book "Ramsey's Disease Myalgic Encephalomyelitis and the Unfortunate Creation of CFS by Leslie Simpson Ph.D and Nancy Blake

http://me-pedia.org/wiki/Kunihisa_Miwa Japanese researcher and clinician measures difference in responses of pwme to OI on " good days" and "bad days". Unable to complete reading. Severe PEM but looks very useful.

A great addition to S4ME. Thanks @Andy for your sterling efforts and Dr Montana for talking with us. What a lovely man. Passionate about science, empathic about what this disease does to patients and very clear about the response needed from Government.

@Hip Your post is extremely interesting. A month ago I bought Dr Simpson's book " Ramsey's disease- ME and the unfortunate creation of ME/CFS" .His work was on red blood cell shape and @MsUnderstood was a subject in his research in the 90s I think. I had become interested in the haemorhological...

@MsUnderstood I think most of us can tolerate disappointment or lack of progress when treated with kindness and compassion. And I'm glad he treated ME as nothing but a physiological illness.

Yes. I've been wondering about this @Mattie. Even bought a second pulsox to check the first. They do differ so obviously something is not accurate, or both are inaccurate. My levels are fairly similar to yours but husband is reliably 98-99 GP not interested, although he did catch me at a good...

So sorry you are facing all this @Liv aka Mrs Sowester. I am glad you have your husband and Pickle. What a devastatingly cruel system.

@MsUnderstood I see that you have posted, and many others, but have not yet read the posts. I think your post and others need reading carefully which I will do after a stress test tomorrow. I had to stop taking betablockers for the test so HR is high and I am trying to ensure I can complete...

Unrest seems to be flying off the shelves. We ordered a copy on Sunday to send to a family member but it hadn't been despatched by 11 this morning. Mr B emailed and they said they had only just finished despatching their weekend orders. They were "overwhelmed by the response it's received"...

@Jonathan Edwards Thanks again for your reply. The way you have expressed it seems logical to me. But if I take myself as a case study, tomorrow I have to return for a stress echo because an echo under anaesthesia in Dec showed improvement over an echo taken 5 months before. I have been and...

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.