Clarification about our Senate Resolution for ME/CFS

Share on facebook
Share on twitter
Share on email

This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work.
Dear Friends,
We want to clarify an important issue about our recent advocacy work.
After two years of fierce advocacy by our community, we are thrilled that Senator Ed Markey of Massachusetts has now introduced a tri-partisan Senate resolution (S. Res 508) to raise awareness of, and encourage more immediate government response to, ME/CFS. This key congressional action is the result of a collaborative effort on the part of three organizations: #MEAction, Solve ME/CFS Initiative, and the Massachusetts CFIDS/ME & FM Association.
In the process of introducing the resolution, one line was inadvertently changed. Unfortunately, that change replaced some of our original suggested language with new language that added ambiguity to the text. This ambiguity understandably resulted in confusion and upset in our community.
Since there is now a line in the resolution that can be read in multiple ways, we want to take this opportunity to clarify our intent. Our intention in referencing the 2015 Institute of Medicine (IOM) report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness has always been to get Senators on record as 1) supporting the IOM’s finding that ME/CFS is a devastating, biological, multi-system disease, and 2) supporting the IOM’s clear call to federal agencies to increase biomedical research. Our intent was not to support the IOM’s suggested name change to SEID or the IOM diagnostic criteria.  
Because there is ambiguity and confusion, we wish to now be extra clear: Neither our advocates, our organizations, nor members of the Senate are pushing for the NIH to rename the disease nor to adopt the IOM diagnostic criteria. Our goal is to revise the language to reflect this when subsequent versions of this Resolution are introduced in Congress, in order to make the original intent clear.
We are so proud of this continuing collaborative effort to build support for S. Res 508, also called “A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.” While a resolution does not carry the force of law, the passage of S. Res. 508 would be a critical tool in our efforts to raise awareness on Capitol Hill and improve and accelerate the response of US federal agencies to the crisis of ME/CFS.
On behalf of,
#MEAction
Solve ME/CFS Initiative
Executive Committee of the Massachusetts CFIDS/ME & FM Association
_____
 

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on email
Email

2 thoughts on “Clarification about our Senate Resolution for ME/CFS”

  1. It’d be very helpful for you to quote the “line in the resolution that can be read in multiple ways” so we don’t have to go searching the whole document. 🙂

  2. It’d be very helpful for you to quote the “line in the resolution that can be read in multiple ways” so we don’t have to go searching the whole document. 🙂

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

In Memory of Dr. Ronald G. Tompkins MD, ScD

Mourning the loss of Dr. Ron Tompkins

Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away this week. Ron Tompkins was a clinician, clinical researcher, and friend and ally to people with ME. He was the Sumner M. Redstone Professor of Surgery at Harvard Medical School, Founding Director of the Center for

Read More »
National Institutes of Health campus buildings from above

NIH Long COVID research lacks clear plan to identify and track ME/CFS

MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction

Read More »

The Last Two Years Changed the World…

What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.  It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top