USA: News from Solve ME

[Utsikt]

Her thesis and links to a couple other publications

 

[ahimsa]

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

Registration Open for ME/CFS Advocacy Week 2026

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

Registration link (Google docs form)

 

[bicentennial]

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."

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.

 

[ahimsa]

@bicentennial - I hope you can find someone at #MEAction or Solve ME who can answer your questions about this year's Advocacy Week.

MEAction "contact us" page:

CONTACT US | #MEAction

Get in touch with #MEAction.

www.meaction.net

Solve ME "contact us" page:

Contact Us - Solve ME/CFS Initiative

We are very interested in your feedback and questions.

solvecfs.org

 

[ahimsa]

Another update from Solve ME. They're asking US residents to contact their government representatives:

Join the Fight for Federal Research Funding and Medical Education for ME/CFS - Solve ME/CFS Initiative

We are asking Congress to take meaningful action on three fronts this year -- the CDC's ME/CFS program, ME/CFS as an eligible topic in the PRMRP, and the NIH's ME/CFS Research Roadmap.

solvecfs.org

It includes an automated tool to help folks contact Congress.

It's difficult to summarize so I'm not going to copy any quotes this time. Please read the post at the link above for details!

 

[bicentennial]

12th March update: Research funding requests to Congress (summary)

Another update from Solve ME. They're asking US residents to contact their government representatives:

The research requests being signed are sent by Solve ME to the Senators and Representatives. The letters do not specify research. They ask to secure more funding for 3 research programs.

It includes an automated tool to help folks contact Congress.

To sign as a US resident, here is the automated tool: it submits a signature form for your name, email and street address. And shows a summary of research requests being sent to Congress.

To be listed on the letters as a supporting organisation, email the organisation name, address, and contact to advocacy@solvecfs.org

Solve ME wants more people to press the USA for more ME/CFS research:

ME Action, and also Not Just Fatigue, joined in writing formal letters to progress these three requests.

It makes a big difference if more Members of Congress sign these letters, asking for:

$10,000,000 now, to top up the $5,400,000 CFS Program at CDC Centre for Disease Control:

- top-up requested as the Program was stuck for 30 years, and Covid still makes more ME / CFS.

The Department of Defence to secure the place it keeps for ME / CFS in its peer-reviewed medical research program:

- protection requested as the Defence Department is a vital source of funds for ME / CFS research

$50,000,000 to implement the NIH ME / CFS Research Roadmap, already recognised by Congress:

- progress requested to action this plan for biomarker(s), the tools of diagnosis, and clinical trials

I can't find the research funding letters. Please correct anything I got wrong, excuse any convoluted bits, say if the layout can be improved, and welcome to re-write at will.

 

[bicentennial]

12th March update. Regional advocacy for standardised clinical education (summary)

To see, sign and send the letters and templates, for both education and research:

- register to volunteer (the live Zoom meetings will be recorded).

Throughout the week, participants will receive clear daily action steps, templates, and guidance. You may participate at your own pace

“standardized knowledge in clinical care - lack of training is creating a medical gap in which patients are experiencing more debility and prolonged care interventions, which then leads to poor patient outcomes, increased disability cases, and higher unemployment rates."

Solve ME wants more people to press their States for clinical education (and more research):

ME Action joined in the Solve ME Advocacy Week (2026) to launch regional letters, aiming to:

- frame the missing quality control and patient-safety, as it requires consistent clinical training

- standardise clinical knowledge, as it is still inconsistent, unsafe, and substandard

- convince regional leaders, regulators, patient safe-guarders, and medical boards to:

* co-operate

* fill confusing gaps in training, to meet quality control in clinical service, and to safeguard patients

* add standard ME / CFS knowledge to licensing procedure and exams

- also spread the three requests to fund more research (see above)

I can't find the education letters. Please correct anything I got wrong, excuse any convoluted bits, say if the layout can be improved, and welcome to re-write at will

 

[ahimsa]

I can't find the research funding letters.

In case it's not clear, this automated tool generates the letters:

Tell Congress to Fund ME/CFS Research in FY27

9 million Americans live with ME/CFS — a serious, disabling disease with no FDA-approved treatments. I just contacted my representatives to urge them to increase CDC funding, keep ME/CFS as an eligible topic area in the Peer Reviewed Medical Research Program, and fund the NIH ME/CFS Research...

solvecfs.quorum.us

I don't believe there is any template for these letters posted on Solve ME's website. So that's why you can't find any letters.

You can't see the content of these letters until after you enter your name, email address, and street address in the tool. Then you are given a chance edit part of the letter with a personal message before you hit send.

After that the tool goes to a phone script for those who are able to make phone calls (I skipped this).

Anyone who has privacy concerns about sharing personal information will probably want to contact their senators and representative on their own. This tool is simply a way to make it a bit easier for those with cognitive issues and/or energy limitations.