Clarification about our Senate Resolution for ME/CFS

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
_____
 

Facebook
Twitter
WhatsApp
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. 🙂

Comments are closed.

Latest News

Image is a sky blue rectangle, with an image of the #MEAction Maryland's logo that has the words Maryland State Chapter over an image of a lighthouse. On the righthand side if the image are the words, Join #MEAction's Marylans's #HelpMESenator Campaign in black font.

Join #MEAction Maryland’s #HelpMESenator Campaign

We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise

Read More »
a collection of millionsmisisng pictures featuring people protesting over the years in red shirts and with protest signs. white dashses connect the photos. the words words "the Story of the #MillionsMissing" is in white font in the top lefthand corner with the #MEAction logo there. The words "Coming Soon" is handwriting font is in the top righthand corner.

“#MillionsMissing is our drumbeat”–Preview Party 9/24

RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST! RSVP & Get Zoom Link Here We have always had to be creative in telling Our Story – the story of M.E. – to the world

Read More »

JNNP to publish edited rapid response by MEAction UK.

MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology, Neurosurgery & Psychiatry (JNNP) are publishing an edited version of our rapid response to  ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’. We

Read More »