What Advocacy and Research Work Does NJ ME/CFSA Report on Its Website?

Updated

NJ ME/CFSA (New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association) reports two main strands of work on its site: awareness and advocacy around ME/CFS in New Jersey, and a research effort centered on a patient survey it intends to run regardless of outside funding. The site's posts describe a state proclamation for ME/CFS Awareness Month, a research proposal submitted to the Doris Duke Foundation, and a plan to inform the New Jersey Department of Health about how ME/CFS patients in the state are managing.

Awareness and advocacy

The site's most visible advocacy item is the NJ Governor's Declaration for ME/CFS Awareness Month, published in a May 9, 2026 post titled "May is ME/CFS Awareness Month!" The post links readers to the declaration itself. This is the clearest example of the organization's public advocacy: getting state-level recognition of the disease and the month.

The organization also frames its mission broadly. In a May 7, 2026 post, "Working For You," it states that NJME/CFSA "continually works to improve the lives of ME/CFS patients in New Jersey," and that by doing so it improves the lives of the larger community living with similar diseases in New Jersey and elsewhere. That statement is the organization's own description of its purpose rather than an independent assessment.

The research proposal and planned survey

The same "Working For You" post describes the organization's research activity in concrete terms:

  • Proposal submitted: In response to a solicitation for new research projects from the Doris Duke Foundation — which the post says pairs new healthcare initiatives with organizations interested in funding them — NJME/CFSA submitted a proposal.
  • Format: The proposal can be viewed as a 5-minute video, which the post says was the submission format the foundation requested.
  • Commitment regardless of funding: The post states that "whether funded or not, NJME/CFSA plans to perform this research project."
  • Current state of the survey: The survey exists in paper (or word processor) format.
  • What funding would change: Funding would help migrate the survey to REDCap, an online application that would make distribution and analysis easier.

The organization is explicit that the project's importance does not depend on philanthropic support: it says the task of informing the NJ Department of Health about how ME/CFS patients are managing in New Jersey — and involving the Department of Health in improving care for chronically ill patients — is "too important to succeed or fail based upon philanthropic organization financial support."

What the research is meant to accomplish

The stated goal is twofold:

  1. Inform the NJ Department of Health about how ME/CFS patients are managing in New Jersey.
  2. Involve the Department of Health in improving the care of chronically ill patients.

The organization also says it will ask ME/CFS patients residing in New Jersey to complete the survey, and it asks supporters to contribute, noting that donations earmarked "Research" will only be used to support the research effort.

Other items the site reports

  • Medical scholarship: A 2026–2027 Medical Scholarship Application is posted (April 26, 2026). The post says all healthcare students in NJ and all NJ residents are eligible to apply, with a possibility of earning $5,000 in tuition remission or educational expense reimbursement.
  • Membership and contributions: A "Membership & Charitable Contribution Form" post (December 29, 2025) and a "Giving Tuesday 2025" post (December 1, 2025) point to fundraising and membership channels.
  • Podcast: An August 20, 2025 post announces a podcast featuring Dr. Charles Shepherd (UK) and Dr. Ken Friedman (of NJME/CFSA and multiple US platforms) on UK and US updates.

How to read these claims

The site's posts are the organization's own reporting on its activities. The awareness declaration, the foundation proposal, and the survey plan are described as things the organization has done or intends to do; the site does not present independent verification of outcomes such as whether the proposal was funded or whether the Department of Health has engaged. Readers who want to confirm the declaration or review the proposal can follow the links in the original posts, and patients in New Jersey who want to take part should watch for the survey announcement described in "Working For You."