Thank you for the clarification @Jonathan Edwards and apologies for rushing to judgement. If this diagnosis is helpful to some people, does it...
I have just looked up this thread, and am physically shaking with anger at this whole FND approach. This. Questions need asking, very firmly....
I love your descriptions @Kitty I am stealing this; as it sounds like something a Victorian gentleman would say before slapping someone with a...
Thanks @Hutan again, clarification appreciated. :thumbup:I am never quite sure how I come across so wasn't sure if this was helpful or a bit ranty!
Thanks for the clarification @Trish that is helpful and somewhat frustrating Quite. This seems to be a common problem. The DWP 's Back to Work...
this is a really good idea It would also act as way of comparing ME subtypes and demonstrate fluctuations over time / life times between...
Bolding mine What transpired seems to be the opposite. My reading of this that it was to be a co production, foregrounding the patient...
Thank you for sharing these comments @bobbler they really resonated with me. I have found myself thinking about this all morning, as they have...
This sounds like a really great proposal @Trish I use a bullet journal and there seems a large chronic illness subsection of that community I...
Yes, exactly. We need some way of communicating that awful reality. Even talking to people like our MP, who is really supportive and we have...
I agree, it doesn't entirely capture my reality, but find it is useful to be able to say I have about 30% functional capacity on a standardised...
I wasn't aware that the MEA produced a disability scale. I use the Functional Ability Scale that Action for ME produced a lot...
This. Also much screaming at articles when I read about "dealing with worry" and get the super helpful advice to give yourself 15mins and then...
THIS. This really gets to me; other people being able to make choices that affect our lives and have no consequences for them. Worse, that this...
Not an ME/CFS book but The Long Covid Handbook by Danny Altmann and Gez Medinger has some of the history of ME, covers management strategies and...
This. I find this a very bitter pill to swallow. It makes me so very angry that my life has and choices have been taken away because of this...
I don't doubt the S4ME squad, if anyone has the spoons to write, I'm sure it will be polite and factually accurate. I am however deeply cynical...
While justified, would this be playing into his victim persona and persecution complex about us vexatious, militant patient activists?
Moved post Slightly off topic - apologies to the mods - but an article below was interesting too:...
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