#MEAction, Author at #MEAction Network

Call-to-Action: Urge your State Health Department to Track ME!

March 19, 2018 12 Comments

Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!

Join our Support Group for Caregivers

March 17, 2018 No Comments

Are you a caregiver (spouse, partner, sibling, parent) of someone with Myalgic Encephalomyelitis? Are you looking for a community of support, or ways to get involved in advocating for people with ME? #MEAction is excited to announce the launch of a new support network dedicated to caregivers. Please join us for our first caregivers call

Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS

March 7, 2018 12 Comments

URGENT Congressional Action! Please take this opportunity to call and email your House representative today to request they sign a letter that inserts favorable language about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) into the House Appropriations Committee report for the FY19 budget. The deadline for your representative to sign the letter is Wednesday, March

Jackson Laboratory ME/CFS Center Starts Blog to Connect with Patients

March 2, 2018 2 Comments

The main goal of the JAX CRC project is to understand how the immune system, microbiome, and metabolome are connected and disrupted in ME/CFS, and to discover the biological basis of this chronic disease. We are hopeful that the knowledge gained from these studies will help to develop molecular markers for the diagnosis of ME/CFS, and the development of new treatments based on these new targets discovered.

Activism 101: Educate Medical Providers about ME

March 2, 2018 9 Comments

Most doctors, nurses and other healthcare providers belong to a medical association in order to connect to a community of their peers. These medical associations typically send out regular magazines, newsletters and emails about the latest news and topics of interest to the medical field. A great way to begin to educate an entire community

Petition to support Dr Myhill’s complaint to the GMC

March 1, 2018 No Comments

As was previously reported by #MEAction, Dr Sarah Myhill has made a formal complaint to the General Medical Council (GMC) about the authors of the PACE trial. In addition to asking people to write to the Chairman of the GMC, she has now set up an online petition which people can sign if they wish

#TimeForUnrest Joins #MEAction

March 1, 2018 1 Comment

We’re thrilled to embark on this next phase by bringing the campaign home, under the umbrella of #MEAction. This will allow us to deepen our efforts around four core areas work: public engagement & education; patient support & community organizing; advocacy; and medical & scientific outreach.

#MEAction receives $50K donation from Pineapple Fund

February 22, 2018 5 Comments

#MEAction is thrilled to announce that it has received a $50,000 donation from the Pineapple Fund, an anonymous donor who is one of the largest holders of Bitcoin in the world. “The #MEAction community is incredibly grateful to the Pineapple Foundation for helping our organization support the work of activists across the world fight for change

Watch the Westminster Hall debate on PACE

February 19, 2018 No Comments

A Westminster Hall debate on the PACE trial will take place on Tuesday, 20th Feb., from 11 to 11:30 a.m. Carol Monaghan MP has secured the debate. Watch the Debate or Attend the Debate Follow the debate on Twitter by following @meactnetuk or @MEActNet. The debate will discuss the flawed science behind PACE, and how it has affected policy

Volunteers on Radio Scotland

February 15, 2018 1 Comment

Listen to MEAction volunteers on Radio Scotland! Available as an MP3 (7Mb) or stream via BBC iPlayer (starts at 36.23) On 14th of February 2018, my mum (Janet) and I were on Radio Scotland to discuss #MEAction’s Millions Missing campaign in Scotland. The piece was instigated after the Millions Missing Time for Unrest event at the

Author: #MEAction