ME/CFS Hits Nature News & A Call Out For An Urgent Advocacy Action!

It is wonderful to see an article in Nature covering emerging science in ME/CFS and quoting top scientists who are working on the disease.

Not long ago in February, NewScientist featured a great piece and now Nature has published an excellent peice by Amy Maxemen, ‘Biological underpinnings of chronic fatigue syndrome begin to emerge’ with the sub-heading “Gut bacteria and altered metabolic pathways are suspects in mysterious disease.” Is the narrative on ME/CFS finally changing!? We think so!

The Nature article features Ron Davis and quotes Ian Lipkin, Zaher Nahle and Avindra Nath as well as points out recent work by Fluge and Mella’s team in Norway. Nature has a huge worldwide readership. It is worth reading the whole article, it’s not too long and gives a quick dusting on personal experience, the IOM report and NIH intramural work. Here are a few interesting excerpts:

“Physicians used to dismiss the disease as psychosomatic, but studies now suggest that it involves problems in the chemical reactions, or pathways, within cells. “We now have a great deal of evidence to support that this is not only real, but a complex set of disorders,” says Ian Lipkin, an epidemiologist at Columbia University in New York City. “We are gathering clues that will lead to controlled clinical trials.”

 

“Lipkin has identified a distinct set of intestinal bacteria in 21 people with chronic fatigue syndrome who also had irritable bowel syndrome — conditions that often occur together. His study, accepted for publication in the journal Microbiome, also links both diseases to changes in body processes influenced by gut microbes, such as the production of vitamin B6 (D. Nagy-Szakal et al. Microbiome; in the press). And a study by another team, published in December 2016, finds problems with the function of an enzyme that is crucial for the process by which cells create energy”

 

“Davis says that such metabolic disruptions could impair cells’ ability to generate energy in response to stress, explaining the findings from his nanofabricated cube. First, however, he wants to ensure that his results are consistent, by comparing more data from people with chronic fatigue and those with and without other diseases.”

Edit – April 1st: Cort Johnson has written an article for Simmaron Research on the narrative change we are seeing, take a look at ‘The Shift: Top Science Journal Asserts Shift in Attitude Towards ME/CFS Has Occurred’

 

Urgent Call to help Advocacy Action

 

Recently, the White House announced huge federal budget cut proposals that were detailed by Jennie Spotila, Cort Johnson and the Solve ME/CFS initiative. The proposed budget cuts are a real threat to science and health, help prevent them by contacting republican representatives and tell them you do not want these cuts. Now, even more proposals have been announced of additional cuts for this year:

 

“The White House is proposing a $1.2 billion cut this year to the National Institutes of Health’s budget, targeting research grants. The proposed NIH cut is part of $18 billion in spending reductions that President Trump’s team is proposing to Congress for the current fiscal year, which ends in October, according to a summary obtained by STAT.”

 

Specifically for ME/CFS, the #MEAction Network and the Solve ME/CFS Initiative have joined forces and gearing up for crucial targeted congressional advocacy efforts and they need the communities help!

First, there is an “URGENT Congressional Action to ask your House representative to sign a letter that inserts favorable language for ME into the House Appropriations Committee report on the FY18 budget.  Deadline to sign: Tues, April 4th.” Go here for good instructions of how to do this!

#MEAction and Solve are organizing a major congressional action for ME/CFS in Washington, D.C. from May 16 to 18 with supporting actions in local districts, online, and by phone! Please help these efforts!

Please see more about what to do and sign up for updates at Solve or #MEAction