What ME/CFS News and Resources Does NJ ME/CFSA Share?

Updated

NJ ME/CFSA (the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association) publishes awareness announcements, research updates, a podcast, and a patient survey plan on njcfsa.org. The site is aimed at ME/CFS patients in New Jersey, their families, and supporters. The most current items on the homepage, as of the posts dated 2025–2026, are summarized below so you can decide which pages are worth your time.

Awareness Month and the Governor's Declaration

The site's lead post marks May as ME/CFS Awareness Month (posted May 9, 2026) and links to the NJ Governor's Declaration. This is the page to check each May if you want official state recognition language you can share with local media, employers, or clinicians. The post itself is short; its value is the linked declaration document.

Research and Advocacy Updates

A May 7, 2026 post, "Working For You," describes the organization's ongoing advocacy:

  • NJME/CFSA submitted a research proposal to the Doris Duke Foundation, which pairs new healthcare initiatives with funders. The proposal is viewable as a 5-minute video in the foundation's requested format.
  • The organization states it plans to run the research project whether or not it is funded.
  • The project centers on a survey of how ME/CFS patients in New Jersey are managing, with the goal of informing the NJ Department of Health and involving the department in improving care for chronically ill patients.
  • The survey currently exists in paper/word-processor format; funding would migrate it to REDCap, an online tool that would simplify distribution and analysis.
  • Donations earmarked "Research" are stated to be used only for the research effort.

If you are an NJ ME/CFS patient, this post is effectively a notice that you may be asked to complete the survey—useful to know before it circulates.

Podcast: UK and US Updates

An August 20, 2025 post announces a podcast featuring Dr. Charles Shepherd (UK) and Dr. Ken Friedman (of NJME/CFSA and multiple US platforms), covering UK and US updates on ME/CFS. For patients who want a clinician-level overview of how research and care are developing on both sides of the Atlantic, this is the site's main audio resource. The post is an announcement rather than a transcript, so expect to listen rather than read.

Scholarship and Membership Pages

Two other homepage items are practical rather than informational:

Item What it offers Who it's for
2026–2027 Medical Scholarship (posted April 26, 2026) Up to $5,000 in tuition remission or educational expense reimbursement All healthcare students in NJ and all NJ residents
Membership & Charitable Contribution Form (posted Dec 29, 2025) A way to join or contribute, including research-earmarked gifts Patients, families, supporters

The scholarship post links to both the application and an announcement flyer; the membership form is the entry point for donations, including the "Research" designation described above.

How to Use These Resources

  1. Start with the Awareness Month post if you need the Governor's Declaration for advocacy or outreach.
  2. Read "Working For You" to understand the survey plan and the Department of Health angle—and to watch for the survey if you live in NJ.
  3. Listen to the podcast for a UK/US research and care update from two named clinicians.
  4. Check the scholarship page if you are a healthcare student in NJ or an NJ resident in training.
  5. Use the membership/contribution form if you want to support the research effort, noting that "Research"-earmarked donations are described as restricted to that purpose.

One caveat: the site presents these as its own announcements and plans. The survey, the REDCap migration, and the Department of Health engagement are described as intended work, not completed results, so treat them as things to follow rather than finished resources.