Medical Education Hub - World ME Alliance

[Yann04]

BTW it seems WMEA is working on a medical education hub. Perhaps S4ME factsheets could collaborate here?

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An historic day: the World ME Alliance has just published the pilot version of their Medical Education Hub. An incredibly valuable resource especially for Global South countries like ours without any specialists or dedicated medical centres.

A thousand thanks to Sian Leary and the team who worked so hard to get this published in half the time originally planned, and to Action for ME and Solve MECFS for their ongoing support of such vital international collaborative initiatives.

Medical Education Hub - World ME Alliance

Full Guidelines Continuing Professional Development Severe ME Quick reference summaries Medicines Nederlands Français Deutsch Português brasileiro Italian עברית

worldmealliance.org

 

[bicentennial]

The provenancing quality of these piloted education resources, also arose upon Forward ME promoting its handy Clinical Care Guide here, where the Bateman Horne Clinic came into question - to be discussed. Its phenomenal how far ME/CFS charities will go without scientific advisors.

Likewise it arises upon promotion of its:

Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Bateman Horne Center - Research - Clinical Care - Education

Promoted by ME Respite and ANZMES, here, in the usual chain of "evidence", being discussed further and further - this being a matter of life and death in intensive care, more or less.

Medical advice without sound scientific advice is up the creek without a paddle, however charitably or clinically endorsed. Not all advisors are sound, be they political, economic, medical or scientific. Death-rates were a better arbiter come the pandemics. Its still sinking in.

The Bateman Horne Clinic does good things but its a mixed bag.

The World ME Alliance's pilot Hub now relies on scientific feedback for its scientific education advice (to clinics). Its pilot Hub offers several languages, inviting feedback with a contact form.

Edit replaced "provenancing" with "quality"

 

[Hutan]

It has previously been suggested to AfME, the organisation behind the World ME Alliance, and to the World ME Alliance itself, that Science for ME could collaborate with the World ME Alliance, or even be a part of the services it offers to members. Ideas such as assisting with finding people for PPI panels for research projects, developing resources and the forum being administered by the World ME Alliance have been floated to both organisations. We were told that there was no interest in this sort of collaboration with Science for ME. Even the idea of Science for ME becoming a member of the World ME Alliance was met with polite rejection - it seemed that we were viewed as not quite suitable.

Since then, we have seen AfME launch its own project to gather people for PPI. And now we see the World ME Alliance launching its Medical Education Hub. Perhaps these things are coincidences and not related to the suggestions - both projects are sensible things to do after all. And, if a great job is done, then that is something to be celebrated.

But, this Medical Education Hub is currently not good, and probably is even harmful. Many of the resources listed as being suitable for the education of medical professionals should not have been recommended.

Honestly, there are times when I despair. Organisations like the Bateman Horne Center are well funded and staffed by a team that includes doctors - they should be getting things right. And the World ME Alliance has paid staff and is supported by the machinery of AfME. And yet the output of these organisations is another thing for people who are sick and who are not doctors and who are not paid to try to combat.

This medical hub of the World ME Alliance is desperately disappointing in so many ways. It is going to make it so much harder for those of us who want the care of people with ME/CFS to be based in evidence, and for people with ME/CFS and the organisations that aim to support us to be credible and respected. Some days, the job just seems too big, and with too few allies.