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There's another issue here too. If we were all deconditioned we be at a certain level of ability all the time. I know for a fact that I'm not deconditioned or even unfit because my ability to move varies wildly; one day I can walk for ten minutes with no problem then hit a bad patch with the m.e...

I heard that chronic fatigue syndrome was originally sold as purely a term for research purposes and that it wasn't going to be used as a diagnosis. But that was the usual BPS, pants on fire, maneuvering.

DR Hillary has always been terrible with anything M.E. And I don't rate him as a doctor generally.

What an amazing guy Ed Yong is. Showing a great depth of thinking

I can add my ten cents. Firstly there is the nurse in Scotland who seems to be very popular. He seems to offer people a great deal of support as well as helping people with pacing etc . Secondly the closest therapy I've come across as suitable for folks with M.E. is health psychology. I...

Until recently Sharpe was based in Edinburgh. I also know the Wessely visited Dundee's Ninewells hospital 1 or two years ago, won't have helped, funny that. Considering all that travelling he does on our behalf, spreading the word :rofl: I have never met a Scottish Dr who uses the Scottish...

The Scottish medical officer declared that we were covered by the english NICE guidelines, but I have a sneaky feeling the BPS lot are making the publishing of the new nice guidelines useless by rediagnosing everyone with something else; so that even if the guidelines go in our favour there will...

There's going to be another issue and that is that even if covid people want a diagnosis of me/cfs, they may not be able to get one. Last month my mother went, with my brother, to our gp to be told that the terms M.E. and CFS were no longer used. He put post viral fatigue on my brother's...

Also the possiblity that the virus was picked up years ago, living in their bodies then reactivated by a life event such as pregnancy, car crash, dental work, etc

If you know anything about the stigma and way M.E.people are treated you're probably are going to resist becoming 'one of us'. It's a bitter pill to swallow. I do hope the compassion for covid survivors is going to extend to those with M.E. in the end. Because, whether a post covid person likes...

There was a programme on British TV last night Surviving the Virus: My Brother & Me https://www.bbc.co.uk/programmes/m000ljnb One of the van Tulleken brother's got covid and is having problems recovering. The only thing that is a little different to m.e. is him running a temperature currently...

Merged thread Inside health radio 4- long covid inside health on radio 4 with dr Mark porter on now 9.00pm uk. Talking about long covid and looking at the services being set up

And longer, that's why there was the word 'invalid'. The victorian's knew all about sickly failing to thrive, bedbound, attic dwelling sorts

The words 'brilliant team" and "experts" stand out. :whistle:

I thought this might be of interest. It's a pretty outrageous tale of a woman who had a lumber puncture. Had all the symptoms of having had a lumber puncture but her doctors discharged her repeatedly, refused to take obs, to try and get rid of her, and had a visiting neurologist gave her the...

The experience I had with doctors when i had severe m.e as a child (which was awful), completely destroyed my confidence. It's taken me years to get over it and I still expect people not to believe a word I say. I wouldn't ask any questions unless I already knew the answer, I wouldn't ask...

I've also contacted my MP. The automated response is that his office is really busy at the moment because of covid so it's taking longer than normal to process peoples submissions, but hopefully it'll get through to him.

Me and my mum both have slow wound healing, from the M.E. as far as i know. Particularly if i get any cuts on my lower legs and feet. I also had ear piercings thattook forever to heal. I used a lot of savlon, cider vinegar and aloe vera in rotation

I found a very good csf leaks association website based in the UK. They list one of the signs of a csf leak as the brain slumping into the spinal canal. So they may also have seen that on the scan but may not have wanted to freak me out.

Hi all, just want to update you on my situation. Talked to the neurologist at ninewells, dundee, yesterday, a lovely lady who started the conversation asking if I'd seen the guardian article about the decode me project and apologising for bringing it up (blooming heck!:angel:)she was genuinely...