USA: News from Solve ME

Solve ME Advocacy Week is scheduled for March 23–27 this year.

Registration Open for ME/CFS Advocacy Week 2026
Solve ME said:
This year, Solve M.E. & #MEAction are partnering on a medical education initiative. As we began planning Advocacy Week this year, we took a step back and asked:

Where can our collective effort make the most meaningful difference right now?

The ME/CFS community has been pushing for better and more widespread knowledge among medical providers for decades. The introduction of ME/CFS knowledge into medical education and national medical exams has been a long-time focus for ME/CFS advocacy groups. Over the past few months, Solve M.E. & #MEAction have been partnering in strategic work to initiate conversations with partner organizations, clinicians, and advocates across the ME/CFS, Long COVID, and infection-associated chronic conditions (IACC) community, asking a central question:

How can we close the knowledge gap in ME/CFS and Long COVID care?

The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.

The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.

Target: State healthcare leadership and patient safety agencies
Click to expand...

Registration link (Google docs form)
 
Monday: Kickoff & training
Tuesday: Outreach to state patient safety/regulatory agencies
Wednesday: Federal social media advocacy (toolkit provided)
Thursday: Outreach to state medical boards & chief medical officers.

How set the standard and by what criteria is which knowledge selected?

This campaign already chose its criteria, set its standards and selected which knowledge it now needs help to disseminate through a systematic state. But it is not revealing the content.

Instead it cites the notorious dire need and predicament. That is not a good reason to give for promoting an invisible textbook

Or did I miss it? The same methodical lobby of local and central authority is underway in the UK, in a void with no transparent published content. No report on back-room meetings either.

Specifics hidden so rhetoric abounds. Kind insight included, but the bag is too mixed for my liking. Lobbying is not "outreach".

Did everyone agree on criteria for knowledge disseminated to state systems? Can convergence define the limits of professional divergence, usually accommodated within specified limits?

What about the people who manage their own condition in different ways? What if a patient diverges? What must trained patient-safety practitioners and field networks do?

Health service (care) and management can be the subject of a standardised syllabus in education, training and practice, but can that be imposed on the patients?

I don't get it. Where is the content being promoted and based on:
" Bateman Horne Center's strong work in medical education and regulatory initiatives with Open Medicine Foundation’s Medical Education Resource Center (MERC), and #MEAction, engaged in conversation with patients and state licensing boards, contributing to clinician education standards."
Click to expand...

Did all the conversing patients agree with the all the finalised content? Do all groups want all doctors trained in all Bateman Horne's collection?

It is Friday. I am still fussing.
 
You must log in or register to reply here.
Back
Top Bottom