Really refreshing to hear the response of ‘we are finding out what they think before we reply’ from a patient association which to me makes the...
It really is all just propaganda being allowed to charade political selling of ‘how we’d like the world to be’ under a very thinly veiled pretence...
It might help requests for better support for me/cfs and what that looks like if an illness like ED has its current blueprint rather than the...
That’s outrageous - how does this happen, is it political that someone unqualified can inveigle onto it?
Am I being a bit bonkers in saying it seems almost as if -removing the disorder part from the name, exhaustion is still a thing in its own right...
The old evidence based medicine tricking people into short term measures bolstered by false hope (and the natural frustration all humans have at...
Having found steroids calmed my body a bit on these things (rather than opposite) and knowing the adrenaline vs cortisol stuff I do before that...
I just re read that first paragraph and ohhh yess wouldn’t it now!
I did wonder .. just from other current neurologists having been trying to get the message out there for the last five years about the dangers of...
The physiosforme pilot where they measured people in their home was an important step here I think because of the cumulative and all the little...
Me too, but it is termed as some form of polycythemia even where ferritin is very low and the rest in normal range (but probably high end) if the...
Just seen this as a fb ad...
Can I ask is your haemoglobin/haematocrit/rbc ‘not low’ - which is apparently polycythemia (of some type) ? Or are they all low ?
It is for much bigger organisations I’m not sure what has been involved here etc though and don’t know how much that figure would be in...
Or/and how they are being treated/not treated as part of that I’m sure ethics wouldn’t allow it (which says it all) but there’s some 60s style...
Is it weird or tactless to say it’s good to hear from a fellow sufferer of ankle stiffness? it’s one I don’t know if I mention much so no idea...
It’s an interesting one because I have other issues/injuries that mean I’m on pretty continual NSAID (and I can tell when it has actually worn off...
Just seen a link to this from SolveME fb: Facebook MELO Study — Metrodora Institute It says the goal is: I'm having a look through it to see...
on a slight sidenote for humour-ish that isn't a total side note I caught some video reels on Jamie from Made in CHelsea fame doing his...
I agree - and what @Peter Trewhitt describes sounds like what in a just world would have always be accessible plus from a justice point of view...
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