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I also find that I get cramp in the muscles I am trying to use - this happens much more quickly when I am more exhausted. I can get cramp in my abdominal muscles from a shortish car journey for example. I would have said a few years ago that my strength for a short-term effort was unaffected but...

$98,158 and 1000 donors. Party on people!

I have a relative whose undiagnosed muscle issue was made significantly worse by statins. Also developed Diabetes...

That makes me feel anxious..... I’d rather have no guidelines than poor guidelines. I just hope that there’s no BPS component.

@Trish I think they must be using the modernized Barthel - where the scoring is changed to 0-20. So unable to do something scores 0, needing assistance scores 1, and independence scores 2. I’m fairly certain this was designed for stroke, so I don’t personally think it’s a good tool for ME. It...

I’m a speech language therapist. (And I own several blue cardigans :D). Most of my former colleagues in the medical field, in fact practically all of them, have completely disappeared from my life since I got ill. Partly because I’m not visible and partly I think because they can’t really...

I had a pet rabbit- lived in the house, and I housetrained her. She was very cute. In the morning I would let her out of her hutch and she would run through to the kitchen and sit on her haunches in front of the fridge, waiting to see what she was getting for breakfast. Then she would run back...

In a strange coincidence, here is the obituary of the man responsible! https://www.thetimes.co.uk/edition/register/bill-heine-obituary-06fbbkj7v

@RoseE - I totally agree that DSS would be more help... I’m sorry you had such difficulty accessing LTS and that getting a wheelchair is so hard. Can your GP refer back to OT directly for you? I personally think that what is needed is for the distinction between disability and chronic health...

in my experience from working in DHBs, the funding for chronic health condition support is much more stretched than for disability support. I guess just because each DHB is always trying to save dollars. My gut feeling is that we have zero hope of getting ME seen as a disability - sorry if that...

I think that it will be a challenge to get the MoH to see ME as something causing disability. Having said that, I do think this is a very good place to start. I’ve always thought the distinction between long-term conditioned and disability was a bit spurious. MS falls under disability support...

Thanks! Everything else is negative...anti-DNA, ENA, sceldroderma and lupus markers all clear.... My ANA result has been stable at that level for about 10 years now...

Thanks @Jonathan Edwards for that. I have anti-centromere levels of 1:1280. It was the rheumatologist who just ordered the latest round of tests.... I think she is wondering if progression of my CREST is a reason I am deteriorating overall. :( Don’t suppose there’s a magic wand?

Has anyone had their complement levels tested? Is a low C3 relevant??? My C4 has come back at the bottom of the normal range, and my C3 is below the normal range.....

I’d be interested to look at those individuals in the rituximab group who did improve. Were there any genuine responders even though overall there was no difference in the groups? Might there be an auto-immune subset or am I clutching at straws?

:cry:

Done. Thank you David!

I had a rheumatologist appointment today. She told me that central sensitisation had been proved to be a real phenomenon.... Can anyone point me to any studies that might help me to gently challenge this view?

My understanding of this is that the conflict here is arising from many S4ME members wanting to have certainty about the facts. We are very used to the facts being twisted and misrepresented, selectively reported, and also to the conflation of theories to facts. The 50% figure has that sense of...

Am I being stupid about this - if this study was a retrospective search for specific symptoms, surely these symptoms might have been recorded coincidentally at the time of the appointments? What I mean is that there is no way of knowing that people reported them due to asking the doctor about...