I think that anyone who has spent any time in Whitehall would recognise that flimsy paper as most likely to be the last gasp of an initiative...
Is this the one time when it is legitimate to say that online communities sometimes include people who miscomprehend information and jump...
No 2021 or 2022 onset option, oddly. Edit: no 2021 or 2022 diagnosis option either, although it offers 1930 for any centenarians who dimly...
I’ve been documenting adrenal adventures (phaeochromocytoma and cortisol insufficiency) in this thread, which I will update with anything of...
+1
Done. I suspect that ticking the box for diagnosed adrenal insufficiency will rule me out, though. As it should. No-one wants confounding...
I was only on the 40mg dose for a few days before halving it, and an endocrinologist okayed the decision. I don’t think my system had had time to...
That’s really interesting @Kitty - would you mind updating if you get diagnosed or find anything else out about how steroids are affecting you?...
Quick update. Firstly, apologies, but it turns out that there is little value in this ongoing n=1 anecdote for anyone else, because adrenal...
Yes, we’ve all been there.
I have discussed or mentioned my ME/CFS symptoms at the Royal Free with consultant endocrinologists, urologists, cardiologists, urological...
The bulk of the messages depicted in the book are not tweets. They are private channel chats in a poorly-described interactive game based on the...
Does he mean “unconstructive” when he says “deconstructive” or is some latter-day Derrida winding him up?
A couple of other quick points on this. I mentioned that Kea has CFS and Inigo has ME. At no point are the two described as having the same...
Kea posts at one point that she is not sure if she is entirely cis. So gender dysphoria is jumbled in with all the other signifiers that she is...
It’s a great thought. Is the aim to head an adaptation off at the pass, or to force an improved portrayal of PwME and ME communities? It might...
Okay, I’ve downloaded and read this book now. It’s a whodunnit, and a fair discussion of Rowling’s attitudes to ME/CFS would be tricky without...
25% of phaeochromocytomas are familial, did your sister have genetic testing done?
The causes for optimism are looking a tiny bit stronger. I had the adrenalectomy last Monday and got myself discharged on Wednesday. I just had a...
I stopped posting here for a few reasons, but this might be worth logging in its own thread. I will be having a phaeochromocytoma removed soon....
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