Buzz – April: Each month we scour the Internet and bring you a list of news articles, blogs and research publications we think you’ll find interesting for our What’s the Buzz post.
Occasionally, we’ll highlight and summarize a few of them for you, like these:
It is estimated that at least 50% of ME/CFS and Fibromyalgia patients experience postural orthostatic tachycardia syndrome (POTS). Lightheadedness, increased heart rate and fainting are the symptoms of POTS and occur when a patient has is standing. These symptoms are relieved once the person lies down. Autoimmunity is hypothesized to be a possible cause of POTS and in fact antibodies made against proteins that help regulate blood flow have been identified. These types of antibodies that attack our body called autoantibodies. In an editorial published this month in Lupus, Drs. Dahan, Tomljenovic and Shoenfeld suggest that the cause of POTS in some patients could be autoimmunity. They give examples of the co-occurrence of autoimmune diseases such as multiple sclerosis and Raynaud’s phenomenon with ME/CFS and Fibromyalgia. They also describe the association with POTS and vaccination. You can access the full text to read this article by clicking here: http://lup.sagepub.com/content/25/4/339.full.pdf+html
Biomarkers can take the “process of elimination” out of diagnosing ME/CFS and Fibromyalgia. Biomarkers (short for biological markers) can be objectively measured and help diagnose disease and help guide treatment. Currently there are no commercially available biomarker tests for ME/CFS and Fibromyalgia despite the sizeable literature describing biomarkers that have the potential for objective diagnosis and treatment. Cytokines are being explored as potential biomarkers. Cytokines are small powerful signaling proteins that help regulate the immune response. In an article published by Lindsey Russell, Gordon Broderick and others in BMC Immunology, they show that detection of a combination of cytokines can be used to determine if someone has ME/CFS and that the pattern of these cytokines shifted depending on long the person was sick. They note that before these cytokine patterns can be diagnostic, other diseases that are similar to ME/CFS and Fibromyalgia will have to be examined to determine how specific these cytokine patterns are. You can access the full text to read this article by clicking here:
OTHER NEWS & NOTICES:
NIH announces the availability of additional research funds for ME/CFS. They are calling for investigator-initiated administrative supplement requests for existing awards to expand ME/CFS research within the scope of the parent award.
- Read the NIH announcement
- Read an opinion piece that calls this move a creative jump start to more ME/CFS research
#MEACTION is planning a protest, scheduled for May 25th, with the theme #MillionsMissing. The goal is to bring attention to the millions of people with ME/CFS missing from their work, their families, and their lives, and the millions of dollars missing from research funding.
Learn about their efforts and see how you can join the movement:
- Update from their 1st meeting
- Virtual Protest and shoe collection
- 10 Things You Can Do with Limited ‘Spoons’
- Millions Missing Poetry Contest
Dr. Zaher Nahle from the Solve ME/CFS Initiative recently interviewed Dr. Avi Nath, who is leading the intramural study on ME/CFS at the NIH. The intramural study on ME/CFS at the NIH has raised some concerns in the ME/CFS community. Dr. Nath’s presentation aims to clarify many of the confounding issues around the NIH’s intramural study and describe the studies in greater detail. READ MORE
USAWG submits testimony to Congress April 15, 2016. Massachusetts CFIDS/ME & FM Association endorsed Outside Witness Testimony to Congress, prepared by the U.S. Action Working Group (USAWG) and filed today with the House and Senate Appropriations Committees. The Testimony provides members of the Committees with information about ME/CFS and makes the following funding requests:
- CDC: Restore funding for ME/CFS in FY17 budget – $6 MM
- HHS/Assistant Secretary for Health – Office of Women’s Health: Continue funding for Chronic Fatigue Syndrome Advisory Committee – $300,000
- NIH: Follow through on recent statements to patients by providing significant and specific funding for ME/CFS research, including RFA’s
The U.S. Action Working Group is a coordinating committee for a number of non-profit organizations and patient/advocates working to advance research on the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The Bateman Horne Center has representation on the working group.
Congratulations to Jan Chambers for winning ProHealth’s 2015 Fibromyalgia Advocate of the Year Award! The award is given to an advocate who has dedicated him- or herself to furthering the interests of the fibromyalgia community, and who has made a significant impact on public awareness of the disease. READ MORE
Are You Getting Your Dose? Magnesium’s Many Benefits By Julie Chen, M.D., integrative medical doctor – 04/06/2016
HUFFPOST HEALTHY LIVING
Leptin Tied to Bodily Pain, Predicts Fibromyalgia Pain Levels, Researchers Say By Magdalena Hegel, MSc, PhD – 4/04/2016
Fibromyalgia News Today
NIH has revised their response to CFSAC ME/CFS research program recommendations from late 2015 – READ the recommendations from the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and the updated Agency Responses HERE