Firstly, I don't want to derail the thread about who has what and what is ME, what some might consider a comorbidity, or just other diagnoses that...
One thing I would like other people to know is that it could happen it them. From 7-70 no one is immune. Even if they didn't get it and someone...
We've been discussing the name here:...
I think a number of patients are scared that if CFS were to be dropped, where would that leave them? Say it was decided to call it XYZ syndrome...
Yep, but it gives people something to whinge about. Another distraction from the elephant in the room, which is the disease itself. That's the...
Me too! I really don't think we're there yet though. Ironically, until the risk of harm and the potential level of harm is finally acknowledged,...
I believe there is a desperate need for respite beds for ME patients, however I'm not sure I would want to see charities pushing for this. The...
Sadly, I'd put money on AfME...... The problem is these sods get access to the very bewildered and newly diagnosed who understandably will do...
[Bolding mine] Yes, it's funny what you don't find when you don't look for it isn't it? I agree research is needed to conclude if there are...
If we were to reuse one of our previous names then.... Ramsey - not everyone who now has a diagnosis of ME/CFS would be included. As far as I...
They're not allowed to do that anymore. It's a shame because, even if it was allowed as an interim measure, it would allow naming that isn't...
The only reason I don't want my illness viewed as psychological is because I desperately want to get better. If the last 30 years of (wasted)...
Welsh is a lovely language. On a number of occasions I "had to" spend a week or even a fortnight in Wales. One of the sites was entirely Welsh...
in fairness to them this was before I got ME.... But yeah, suddenly 12-18 hour days become the norm and you even get "homework" to do on your commute.
I know it's come up before. I remember describing it before too. Maybe elsewhere as you say @Hell..hath..no..fury... It does make a...
My top duvet covet changing method - if you can't get someone else to do which is far better - When handling the duvet I tend to roll it up as it...
This reminds me of an NLP course that we were all sent on in the early 90s. There was a lot of focus on "negative self talk". I'm sure the 30...
Me too. I don't believe I have EDS but looking at the chart in post #7 above I am surprised at the number of things I would say yes to. Despite...
I agree. On the other hand the BPS publicity arm a.k.a. the SMC will continue to use those terms in news articles. I have had specialists agree...
There have been a number of med shortages over the last year. Generally due to pharma companies buying each other out, or moving manufacturing...
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