- Last Updated: 10 February 2020 10 February 2020
In this month's newsletter, a survey about support groups, an announcement about the Washington DC Lobby Day on April 21, 2020, two research studies that need your participation, and a new, free online course. Read on for all the details.
Would You Like More Group Activities? Please Fill Out Our Survey
We are developing new ideas on how to create a more supportive community, connect members and disseminate information. We already have a successful virtual patient support group meeting monthly. And, now, we would like to host other types of virtual and in-person groups. Would you please let us know how interested you, or any of your family and friends, are in the ideas mentioned in our survey? Please do take 2 to 5 minutes to answer the questions. And, if you would like to be contacted with further information about any of our groups, please provide your email at the end of survey. Thank you so very much!
Mark Your Calendars: Advocacy Day is April 21, 2020
The 2020 National Solve M.E. Advocacy Summit in Washington DC, sponsored by Solve ME/CFS Initiative (SMCI), will take place from Monday, April 20 through Wednesday, April 22, 2020. The main event, ME/CFS Advocacy Day on Capitol Hill, will take place on Tuesday, April 21, 2020 – where SMCI hopes to hold over 200 meetings with Members of Congress and their staff. This summit brings together people with ME/CFS, their loved ones, advocates, scientists, clinicians and caregivers from across the country to demand more action and research funding, meet other advocates, and share their unique stories with Members of Congress. For the latest information, please visit the event webpage. Register for Advocacy Day before March 20, 2020. Participation is free, but you must register so that SMCI can arrange meetings with your congressional representatives. SMCI has a limited number of $500 travel grants available -- apply here (deadline February 21). Our association also has limited travel funding for advocates from Massachusetts and New England. Send an email to advocacy at massmecfs dot org letting us know that you have registered for Advocacy Day and who your US Representative is. We will give highest priority to the first person to contact us from each congressional district.
Research Studies Need You!
Individuals with Fibromyalgia and PTSD
Researchers at the VA Boston Healthcare System are seeking individuals with Fibromyalgia and Posttraumatic Stress Disorder (PTSD). We want to provide a personalized exercise plan that may reduce your Fibromyalgia and PTSD symptoms. We are also interested in how your experience of trauma and Fibromyalgia may affect your recovery.
- Who can Participate?
- Individuals (veterans and non-veterans) ages 18-60 with fibromyalgia
- Exposure to traumatic event(s) in the past
- Exercise one-on-one with a personal trainer.
- Participants are involved in a 3-month progressive exercise training program.
- Up to $990 compensation for full participation in the study.
- Call 857-364-6293.
See the study brochure here.
Healthy, low-active adults in Southern California or near Ithaca, NY
Join a study of exercise capacity and activity level in healthy, inactive adults made possible with funding from NIH Grant number U54NS105541. This study needs healthy controls in order to compare to post-exertional malaise in people with ME/CFS.
Who is eligible? Healthy, low-active adults between 18-70 years
Who is NOT eligible? 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
What must you do? Have a phone call with us to determine eligibility for the study. If eligible:
- Meet with your physician or our physician for clearance to participate in the study. 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. This meeting takes about 60 minutes.
- Complete questionnaires about your health/medical history and physical activity level. Takes about 60 minutes.
- Complete 2 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 per test.
- Wear a wrist watch device for 10 days before and 10 days after the exercise tests. It takes about 5 minutes to learn how to use this device.
Where is the testing being done? Ithaca College in Ithaca, NY or at the ID Medical Office in Torrance, CA.
What will you get? 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 at ithaca dot edu
- For Torrance, CA area contact Jared Stevens: 209-599-7194 or info at workwellfoundation dot org
More information at this website: https://neuroimmune.cornell.edu/research/.
Free Online Medscape Course on ME/CFS for Physicians and Nurses
New, free Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Test Your Strengths and Gaps in Knowledge online course by Nancy Klimas, MD, Nova Southeastern University, is now available. Doctors and nurses can earn 0.25 continuing medical education credits/contact hours by completing this quiz-based, informative course. The correct answers and supporting information are presented after every few questions. Pass this on to your doctor, or take the course yourself to learn the basics and validate the advice from your doctor. You will need to create a free account on Medscape to take the course.
Volunteer with Us!
Can you help with our activities? We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know, either by responding to this email or through the Contact Us form on our website. Or join our next volunteer phone call on Saturday, February 15th at 12 noon (Video & audio: https://zoom.us/j/395006189; Audio only:+1 720 707 2699 US, Meeting ID: 395 006 189). And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS.
Leah Williams, Association President