Advocacy Roundup – Holding Our Institutions Accountable

It has been a hot summer for many around the world, and another month of courage, resilience and bravery as people with ME continue to demand equitable research, treatments and respect. We continue to fight against harmful treatments and stigma worsening the health of everyone from the newly diagnosed to those who have lived with the disease for decades.
United States

To the CDC: Don’t hire a shoddy contractor to craft ME guidelines 

More than 7,000 people have signed the petition telling the Centers for Disease Control (CDC) not to hire the shoddy, sole-source contractor whose previous recommendations for ME included Graded Exercise Therapy and Cognitive Behavioural Therapy, and concluded that PACE was a good trial with little bias! The ME community is demanding that the CDC not issue this contract, and that the agency meets with #MEAction immediately to discuss implementing a transparent and collaborative process for creating future guidelines that engages advocates and community representatives, and includes experienced ME researchers and expert practitioners.

Mayo Clinic endorses treatments that harm people with ME 

The Mayo Clinic refuses to reconsider its continued use of Graded Exercise Therapy (GET) for people with ME. “The Mayo party line: GET and Cognitive Behavioral Therapy are there to stay because everyone needs some kind of exercise (even if just walking around a table). David Tuller reports on a recent meeting between the ME/CFS Alliance in Minnesota and the Mayo Clinic.

To the FDA: Don‘t ban substances useful to people with ME 

The FDA is reviewing substances used in compounded treatments to determine if they are clinically necessary, but the committee may not be considering the needs of ME patients before deciding to ban substances. Help ensure the FDA hears from people with myalgic encephalomyelitis about substances that are helpful to us. Check here to see if the substances you take are at risk and find out how you can write to the FDA to protect them.

United Kingdom

Another open letter calls for the Lancet to reanalyse the PACE trial

Over a hundred academics, ten MPs and scores of patient groups from around the world, including #MEAction, signed an open letter calling for The Lancet to reanalyse the PACE trial because of its well-documented methodological and ethical flaws in its study of treatment for people with ME. The open letter to the Lancet received coverage in The Times!

GMC ignores patient campaign against PACE trial 

“The UK’s General Medical Council just threw 250,000 disabled people under a bus,” writes Steve Topple for The Canary. Topple explores the GMC’s decision to ignore the coordinated complaint against the authors of the PACE trial led by Dr. Sarah Myhill and backed by hundreds of patients harmed by CBT and GET.

Company tournament raises money for #MEAction UK

In Scotland, Cairn Energy employees donated £2,400 in proceeds from a charity football tournament to help #MEAction grow our UK team. Hemant Gurav is an employee of Cairn Energy; his wife, Kim Gurav, is a volunteer with #MEAction Scotland and has severe ME. We are close to reaching the £20,000 mark on our #MEAction UK fundraiser thanks to all of your efforts and to a big bump from the Cairn Fitba Team!
Let’s keep the momentum going! Want to run a marathon for ME, donate your birthday, or mobilise friends and family toward your individual fundraising goal? Start an individual fundraiser for MEAction directly on our website (and skip the third party platform fees). Learn more.


Senators form parliamentary group for ME

Exciting news from Australia! Sasha Nimmo shares that “Three senators have formed a Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s federal parliament.”  Susan Hutchinson summarizes what Professors Sonya Marshall-Gradisnik and Don Staines (NCNED) presented to members of the House of Representatives and to the Senate at Parliament House in Canberra on August 22.


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