Yes, you read right! Thanks to the incredible community outreach over the course of just a few days, TEN percent of the House of Representatives signed a letter to the chairs of the House Appropriations Committee advocating for ME/CFS. Forty-four members from twenty states and the District of Columbia signed on – thirteen more than signed last year’s letter.
If your House representative signed the letter, please take a minute to call or email them thanking them for their support, or post a note of thanks on their Facebook page. Many thanks to Representatives Zoe Lofgren and Anna Eshoo who, again, led their colleagues in championing our cause. Please thank them, also, for their support. And if your member did not sign despite your request, you can also ask them why not!
The letter provided the justification for including ME/CFS recommendations in the Appropriations Report for Fiscal Year 2019 starting 10/1/19. We are especially pleased that for the first time our representatives recognized the (1) need to increase research funding for ME/CFS to better reflect the disease burden, and to bring funding in line with other similarly burdensome diseases, and (2) NIH’s ability to dedicate more funding to ME/CFS since the NIH received its largest budget increase in recent years.
Read the full letter.
In brief, the proposed report language:
(1) Supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),
(2) Encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,
(3) Recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,
(4) Urges the Department of Health and Human Services to devise a multi-year strategic plan. The sign-on letter states that the increases in NIH’s budget affords NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden.
Learn more or get involved with our Congressional advocacy work. Get in touch at [email protected].
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the