Advocacy Success! Florida Members of Congress Take Action for ME/CFS

Florida Members of Congress Take Action for ME/CFS

Congressmen Gus Bilirakis (left) and Darren Soto

Solve M.E. teamed up with local Florida advocates to launch a lightning advocacy action with huge success this week. Congressmen Gus Bilirakis and Darren Soto agreed to lead a Florida Congressional delegation to sign a letter to National Institutes of Health (NIH) Director, Dr. Francis Collins, urging more immediate action for research on ME/CFS. In just three business days, the team secured the support of all 27 representatives from Florida state!

Read the letter on our website at: https://solvecfs.org/wp-content/uploads/2020/02/Ltr-to-NIH-ME-CFS-Support_02.13.20.pdf  and don’t forget to send a thank you to @RepGusBilirakis and @RepDarrenSoto  on Twitter for leading the charge.

Congratulations to all of Florida advocates who made this action a success!

​​​Solve M.E. Stands Up for People with ME/CFS, Advises Against Increasing the Number of Disability Reviews for Social Security Claimants

Solve M.E. formally submitted public comments to the Social Security Administration (SSA) strongly urging a rejection of proposed rule in Docket SSA-2018-0026. The proposed rule creates a new category for disability recipients that would increase the number of continuing disability reviews (CDRs). If this new rule were to go into effect, SSA would ramp up CDRs, potentially creating unnavigable obstacles for even qualified beneficiaries of the program.

Solve M.E. firmly believes this proposed rule will cause harm to disability beneficiaries with ME/CFS while increasing SSA expenditures and abandoning our most vulnerable citizens to poverty. Solve M.E. also included responses from the ME/CFS community about the proposed regulation in its formal comments. In doing so, Solve M.E. ensured that vulnerable people with ME/CFS were able to contribute their opinions anonymously and without fear of reprisal.

Read Solve M.E.’s public comments in their entirety here: https://solvecfs.org/wp-content/uploads/2020/02/Public-Comments-NPRM-84-FR-63588-Jan-2020.pdf

Solve M.E. Offers Guidelines to Help ME/CFS Researchers Access Additional $350 Million in Federal Funding

In January we told you about Six Major Federal Wins for ME/CFS. One of those victories was the success of Solve M.E.’s two-year effort to add ME/CFS as an eligible topic area for the Peer Reviewed Medical Research Program (PRMRP).

This program will receive $350 million in 2020, which ME/CFS researchers can now apply for and compete to receive. In order to help researchers take advantage of this new opportunity, Solve M.E. Director of Research Allison Ramiller has created helpful guidelines explaining in detail the application process and providing quick links to the application portal and other resources of pertinent information.

View the guidelines here: https://solvecfs.org/wp-content/uploads/2020/02/PRMRP-Funding-Info-and-FAQ-Flyer.pdf

Please share the information with researchers who may be interested in pursuing funding!

Inactive Healthy Controls Still Needed for NIH-Funded ME/CFS Studies in New York and California

Volunteers are needed for a Workwell study being conducted in Ithaca, NY and Torrance, CA. Funded by the National Institutes of Health (NIH), the study measures exercise capacity and activity level in healthy, inactive adults.

Who is eligible to participate?

Healthy, low-active adults between 18-70 years of age

Who is NOT eligible to participate?

  • Smoker or stopped smoking less than 1 year ago
  • Pregnant or breast feeding
  • Diabetic
  • Have a metabolic, cardiovascular and/or neuro-immune disease
  • Have an orthopedic limitation that prohibits cycle exercise

How to Participate:

Have a short phone call (about 10 minutes) to determine eligibility for the study. If eligible, meet with your physician or our physician for clearance to participate. During this meeting, urine and blood samples will be collected. You will not be charged any fee to be examined by our physician or for the blood and urine tests, which takes about 60 minutes.

You will be asked to complete questionnaires about your health/medical history and physical activity level (takes about 60 minutes). You will then complete two exercise tests on a stationary cycle, separated by 24 hours. Each test requires 8-12 minutes of exercise. A small amount of blood will be collected from your arm before and after each exercise test, and a single drop of blood from your fingertip before and after each test. The total test session is about 60 minutes long per test. Participants will wear a wrist watch device for 10 days before and 10 days after the exercise tests. Training to use the device will take about 5 minutes.

Where is the testing being done?

Ithaca College in Ithaca, NY or at the ID Medical Office in Torrance, CA.

How will you be compensated?

If you qualify as a subject, you will receive $200 upon completion of the study. You will get a report of your exercise test results, and how your test results compare to others who are your age and sex. This will provide information about your aerobic fitness level and baseline data for starting an exercise program if you are interested in doing so.

How long will this take?

The total time commitment for participation in this research study is about 4.5-5 hours, not including travel to and from the testing site.

How can I sign up or get more info?

For Ithaca, NY area contact Maria Russell at 607-274-7948 or
MECFSstudy@ithaca.edu

For Torrance, CA area contact Jared Stevens: 209-599-7194 or
info@workwellfoundation.org

http://workwellfoundation.org/wp-content/uploads/2019/08/MECFS-Recruitment-ITHLA-7-5-18-Controls.pdf