Announcing #MEAction groups We are thrilled to formally announce a new feature we’ve had running in the background these last few months: #MEAction groups. As many of you know, Beth and I have been deeply inspired by the legacy of ACT UP and its grassroots ethos. Decisions were made democratically but decisively in large group meetings,
#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS) to throw its considerable weight behind calls to The Lancet to have the notorious PACE trial independently re-analysed. The petition also asks the HHS to take immediate steps to protect ME/CFS patients both in the US
Background The Ministry of Health (MoH) is seeking feedback on its update to the New Zealand Heath Strategy. Let’s ensure the ME/CFS community is heard – express your views on the forum now! https://futuredirection.health.govt.nz/join-the-discussion/people-powered/are-there-health-services-geared-your-needs-and-lifestyle What you can do The MoH is asking: “are there health services geared towards your needs and lifestyle?”. This is a
Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have
I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates 27,000 parents’ reports on the effects of pharmaceutical and alternative interventions on autistic children. It’s not a clinical trial or a substitute for doctors’ advice. It uses subjective, self-reported measures (which we all know are problematic). It’s
The Gottfries clinic is the leading ME/CFS and fibromyalgia clinic in Sweden. It both treats patients and conducts biomedical research, yet the health authorities there are planning to withdraw their support in favor for a “bio-psycho-social” approach to treatment. Politicians in Gothenburg, Sweden have now decided not to renew the contract with the clinic when
On Friday, 30th October, Change For M.E. Change For Us launched their short film, The Last Great Medical Cover Up. The film details the extent of medical discrimination and neglect people living with M.E. are being subjected to every day. The 35 minute documentary features 6 individuals expressing what it’s really like to have a
Given the weak and flawed methodologies of the PACE trial, which claims that CBT and GET led to the recovery of ME/CFS patients, we, the undersigned patients, doctors, scientists, parents, children, family, friends, caretakers and #MEAllies: – call upon The Lancet to retract the claim made in its February 2011 editorial [1] that 30% of
Editor’s note: Michael Evison of ME Alliance has written this letter to the Danish prime minister about Karina Hansen’s case and is asking for signatures of support from all around the world by Midnight October 29th (GMT). [button_color url=”http://sallyjustme.blogspot.se/2015/10/karina-hansen-please-sign.html” content=”Sign the letter” target=””] Dear Prime Minister Lars Lokke Rasmussen, We the undersigned wish to appeal to you,
Editor’s note: Karina Hansen is young Danish woman with severe ME. In February 2013, she was forcibly removed from her home by police and taken to a facility for functional (i.e,. psychosomatic) illnesses. The ME Alliance is organizing an action for Karina’s third birthday away from home. You can help Karina by sending cards and gifts
