News from Doctors with ME

bobbler said:
Spot on. You know when someone's 'nailed it', because after you've read it then the whole matter seems like it has always been obvious - do we really not already have this etc (despite I know how hard/much it takes to get it to that stage).

And I think the last para is really well pitched too. I'm certainly convinced of it.
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One thing that bothers me is that they refer to
"• Correct diagnosis – nutritional failure secondary to ME / Mast Cell Activation Syndrome (MCAS) / dysautonomia affecting the GI tract."
I'm hoping that post GWAS there'll be some leads re the underlying cause of ME/CFS but at this point in time we cannot e.g. state "Mast Cell Activation Syndrome (MCAS)"
Stuff like MCAS seems to be interpreted (by many Doctors) as a euphemism --- for "functional disorder" or whatever.
Otherwise I though it was useful.
 
Wonko said:
Bolding mine

These would be the very same royal colleges that made, so I am told, 2,500 pages of objections to the removal of GET as a 'treatment' for ME/CFS, while the very same people were saying that they didn't use GET anyway?

Somehow, I can't see them being inclined to change, or be helpful, to patients, pwME, in any way.
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Following the trade union analogy (which I agree with) I think there's reason to believe that the Royal College's stance was basically reflecting vested interests. A small group of influential vested members are opposed --- others (like GPs) are concerned that they'll no longer have an easy out (in the 10 minutes or whatever a GP provides/gets paid for) --- so the Royal College's stance reflects those vested interests.
I do wonder if other members of the Royal College's don't actually fall into one of those self interested groups --- since they aren't interested, of course, they've no need to be informed/proactive---

Maybe getting that group, who don't have a vested interest, involved would be a way to get a more objective stance from the Royal College's. Others have pointed out that Covid may be a way in --- Doctors are/have been in the front line and those who became ill/can no longer work are basically left to fend for themselves. So Doctors 4 ME might have a target audience/sympathetic audience within the Royal College's.

Rambling thoughts!
 
Wonko said:
Presumably the same vested interests still exist tho - with a proven ability to manipulate the policies regarding pwME of the royal colleges?

Unless these malign actors have been disproportionately impacted by LC, then I don't see how LC changes much.
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Yea I think inertia, i.e. from the rational/non-vested interests, may be a barrier - but Doctors 4 ME should have a go --- particularly on behalf of those Doctors who are no longer able to work ---.
 
FMMM1 said:
Following the trade union analogy (which I agree with) I think there's reason to believe that the Royal College's stance was basically reflecting vested interests. A small group of influential vested members are opposed --- others (like GPs) are concerned that they'll no longer have an easy out (in the 10 minutes or whatever a GP provides/gets paid for) --- so the Royal College's stance reflects those vested interests.
I do wonder if other members of the Royal College's don't actually fall into one of those self interested groups --- since they aren't interested, of course, they've no need to be informed/proactive---

Maybe getting that group, who don't have a vested interest, involved would be a way to get a more objective stance from the Royal College's. Others have pointed out that Covid may be a way in --- Doctors are/have been in the front line and those who became ill/can no longer work are basically left to fend for themselves. So Doctors 4 ME might have a target audience/sympathetic audience within the Royal College's.

Rambling thoughts!
Click to expand...

I've gone round the same circle of pros (or being really 'bright side') and cons (remembering what the guideline took and guarding against filibustering/running down the clock) too.

I think one thing we can say is that this as a document has brought up the right questions and moved us onto the how part. *EDIT which might include the point about evidence/analysis that needs to be behind the examples for buy-in

Could this memory [of the guideline/round table stuff] be insightful and the solution be in part a Dame Carol Black equivalent, even just in a 'imagine you will be giving your answers to/in front of..' sense?
 
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