United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

Jonathan Edwards said:
I understand that this is what is being done here on S4ME.
Doctors for ME isn't really a clinicians' organisation and has put out some misleading material.
If you want something done, best to...
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That's why I suggested PPI input sourced from here but because of the history of lobbying (Cochrane etc) , S4me is perceived as a very partisan, heavily patient led body so would not be credible for such a role (sorry) .

To be effective politically imo it would need to be seen to be coming from a neutral and independent clinician-led body with broad support. Similar to BACME but without their bias and deviations from nice etc. Such an organisation doesn't exist right now, eta sfaik, happy to be corrected.
 
Jonathan Edwards said:
And it isn't going to for a bit. Surely what is needed is the 'material' with reliable information. We can produce that. If the clinicians change their position to ours then they can use it. If they don't then nothing is going to happen anyway.
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In an ideal world that would be true. I don't think medical politics is that logical sadly this has become too idelogical. I feel we need an organisation to do damage limitation before that happens, and to be ready when it does as idealogues embedded in BACME will resist that evidence for their whole careers as Wessely has done.
Nice should have been sufficient to serve as that bulwark, but the developments of the CKS, Elaros apps, MEA and BACME embedding itself even deeper into the medical infrastructure are collectively of deep concern.
 
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