Saturday, June 10, 2017

Good News in ME/CFS Advocacy & Research

How about some good news for a change? I don't know about you, but I am overwhelmed by what I hear on the news each morning and what it might mean in the future for me and my family.

So, here is some good news in the world of ME/CFS, some definite signs of progress!

NIH Launches In-Depth In-House Study of ME/CFS
This study was first announced in 2015 but has received some recent publicity and seems to be moving forward. This article explains how extensive the study is and why it is important. How is this different from other research studies?
  • It is being conducted by the NIH itself, using its own in-house experts. Given all the recent news about proposed slashes to the already tiny budget for ME/CFS, this is huge news, that the NIH has invested in our disease this way.
  • It is perhaps the most extensive study ever undertaken, using strict diagnostic criteria for ME/CFS and an enormous battery of tests, including sleep studies, immunological testing, genetic testing, different types of MRI, exercise testing, metabolic testing, and more - all in one study.
  • Participants in phase 1 include 40 severely ill ME/CFS patients who meet the strict criteria, plus another 20 patients who previously had Lyme disease (that part is exciting to me!), and 20 healthy controls.
  • In the first phase, over 3-5 years, they are searching for biological markers, the second phase will take that information and apply it to a larger population of patients, and the third phase will try interventions/treatments.
Stay tuned for results - hopefully, they will be sharing conclusions and progress along the way.

New Primer on Pediatric ME/CFS
The wonderful and well-respected Dr. Peter Rowe, of Johns Hopkins, (pediatric ME/CFS and Orthostatic Intolerance expert) has collaborated with Solve ME/CFS Initiative to publish a new Pediatric ME/CFS Primer in an upcoming issue of the journal Frontiers in Pediatrics. The primer was envisioned by the New Jersey ME/CFS Association and written by a team of experts, led by Dr. Rowe. You can read more about the new pediatric primer here and link to one of Dr. Rowe's excellent webinars at the same page. This is fabulous news for the millions of sick kids out there! It should help spread the word to regular pediatricians about the effects of ME/CFS on kids and how to treat it.

ME/CFS Advocacy Week 2017 Was a Huge Success!
This year, in conjunction with ME/CFS Awareness Day on May 13th and ME/CFS Awareness Month in May, the Solve ME/CFS Initiative joined forces with #MEAction, along with over 1,000 volunteer advocates. Their planning and efforts paid off, with these successes:
  • 71 meetings with the offices of Congressional representatives in Washington, DC
  • 8 face-to face meetings directly with members of Congress
  • A Congressional briefing providing information on ME/CFS
  • Over 3.000 messages sent to Congressional representatives by advocates
  • Dozens of local meetings with Congressional offices around the country
  • 6 politicians Tweeted about ME/CFS!
You can read all about the various efforts and their effects here. A big thanks to all of the advocates - patients, families, friends, and more - who helped make all this happen. It seems we are finally getting our message heard and spreading the word about the effects of ME/CFS to those in power.

Excellent Response to NIH Requests for Proposals
The National Institutes of Health (NIH) in the U.S. sent out two requests in January, for two different kinds of research centers. ME/CFS featured prominently in almost a dozen of these proposals, each including a wide range of diverse scientists and medical researchers. Even better, many of the top scientists included in these proposals will be applying their considerable talents to ME/CFS for the first time. This is just what we need, a double whammy: NIH funding for complex ME/CFS projects and an infusion of new talent to complement the wonderful but small group of experts currently dedicated to ME/CFS research. You can read all the details in this update from Solve ME/CFS Initiative, who were involved or assisted with many of the proposals.

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