USA: News from Solve ME

The Solve Newsletter thread has been merged with this thread.

Spring 2018

Contents:
Page 2 - SMCI This Quarter: A Summary of Our Work
Page 5 - SMCI Welcomes Two New Members to Its Board of Directors
Page 6 - What’s in a Definition? Finding a Common Language for ME/CFS
Page 8 - PEM: It’s Time to Retire the Term
Page 9 - Dr. Maureen Hanson: From Plant Biology to ME/CFS Champion
Page 12 - Advocacy in Action: 44 Members of Congress Unite for ME/CFS Funding
Page 14 - M.E. Too? Can the Women’s Health Equity Movement Bring Attention to ME/CFS?
Page 16 - Patient Voices
Page 17 - SMCI Answers Reader Questions
Page 18 - Your Support Fuels Our Efforts
Page 19 - Reflections from Our President Carol Head

View online,http://issuu.com/solvemecfsinitiative/docs/chronicle_050918_epub?e=17941417/61119520

or in PDF form, https://solvecfs.org/wp-content/uploads/2018/05/Chronicle_050918_epub.pdf

Action for ME and Solve ME/CFS Initative announce partnership

Action for M.E. is pleased to announce its trans-Atlantic partnership with US charity Solve M.E., focused on enhancing the wellbeing of people with M.E., raising awareness, delivering policy changes, and increasing research on its causes and possible treatments.

The partnership consists of three initiatives:

• A two year postdoctoral fellowship designed to prepare postdoctoral researchers to excel in a career focusing on applying computational biology,
• biostatistics, quantitative genetic, and data science to understanding the molecular basis of M.E. It includes one year being mentored by Prof Chris Ponting at the University of Edinburgh (also co-leading DecodeME) and a year mentored by Dr Liz Worthey at the University of Alabama.
• Exploring how a digital platform like HealthTree can benefit people with M.E., connecting them with peer-support, shared experiences of symptom management, and research to which they can contribute. HealthTree has already started to do this successfully for people with myeloma.
• Global advocacy in collaboration with the International Alliance for M.E., including plans for this year’s M.E. Awareness Month.

From a You+ME Registry tweet
"We're pleased to share that we're partnering with @actionforme on a post-doctoral fellowship, global advocacy + an exploration of a digital platform that connects #pwME with peer support + other resources. #ME/CFS."

https://twitter.com/YouMeRegistry/status/1368962374691127299

From a Solve email.

Solve M.E. Partners with UCLA on ME/CFS Research
on Brain Stimulation

First time ME/CFS included in UCLA program

We’re excited to announce that Solve M.E. has partnered with the University of California, Los Angeles (UCLA) Iris Cantor Women’s Health Center to expand ME/CFS research through their Annual Health Pilot Program—the first time an ME/CFS study has been included. Solve M.E. will support a study by the UCLA Neuromodulation Division on a promising investigational treatment. The partnership is generously supported by Karl Zeile, a Solve M.E. board member, and Dian Zeile.

Fifteen female subjects will receive 20 sessions of Repetitive Transcranial Magnetic Stimulation (rTMS), a non-invasive brain stimulation technique with demonstrated efficacy for treatment of depression, pain, sleep, and cognitive symptoms which are common in patients with ME/CFS.

The treatment will include stimulation to two sites in the brain that can help relieve these symptoms (the left dorsolateral prefrontal cortex and primary motor cortex). Changes in brain activity will be monitored with high-density electroencephalography which can help to improve our understanding of the mechanisms underlying treatment of ME/CFS.

“We anticipate that rTMS treatment will significantly improve many of the symptoms of ME/CFS. Positive results from this study will provide proof-of-concept evidence for a novel rTMS treatment approach for ME/CFS to be validated in a future double-blind, randomized control trial,” said Juliana Corlier, assistant project scientist and Andrew F. Leuchter, MD, Professor of Psychiatry.

Solve M.E. Chief Scientific Officer Sadie Whittaker remarked, “We are thrilled that ME/CFS, a disease diagnosed four-fold more in women than in men, was included in the UCLA Iris Cantor Center Annual Health Pilot Program and could not be more excited about this project. We believe that this partnership with UCLA will help increase awareness of ME/CFS and open up conversations about how ME/CFS is diagnosed within UCLA Health.”

A thread to discuss the possibility of rTMS as a treatment and the proposed study is here
https://www.s4me.info/threads/transcranial-magnetic-stimulation-brain-stimulation.20266/