The media has upped the ante on a vicious and abusive war on chronically ill people. Doctors involved in the controversial PACE trial have lashed out, claiming they can’t continue their work because of ‘abuse’ and ‘trolling’ from online activists. Yet, PACE findings left thousands of people in the UK who live with Myalgic encephalomyelitis, commonly referred to as ME, without access to effective treatment. What the establishment media failed to report, is that the findings of the PACE trial are flawed, at best.
“Damaging and ineffective”
On March 13, Reuters reported that Professor Michael Sharpe – one of the PACE researchers – claimed he was the victim of “toxic” online abuse. It also reported that other medical professionals, including Professor Simon Wessely, and Per Fink, could no longer continue their work or research into ME. The report claimed they’d been “hounded by complaints and protests from CFS [chronic fatigue syndrome]/ME activists”.
Both the Times and the Mail picked up on Sharpe’s accusations. On 18 March, Sharpe continued to make similar allegations on BBC Radio 4‘s Today show. And by March 19, Dr Mark Porter again reiterated these claims in the Times.
But, as The Canary‘s Steve Topple has been reporting for some time, the PACE trial results:
claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).
The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.
‘Toxic activists’ aren’t trolling anyone. Instead, those living with ME, their families and campaigners have simply tried to get answers and to demand effective treatment for a debilitating illness. This latest media attack fails to report this.
“All out war”
Topple believes that there’s “all out war” waged by “medical professionals and the media” against “a group of chronically ill and disabled people”.
The PACE findings established the only NHS treatment route for ME/CFS patients. As a result, thousands of chronically ill and disabled patients can’t access effective treatment.
ME is a chronic systemic neuroimmune disease. As Topple reported, its symptoms are devastating. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. Yet, for too long, the UK medical profession failed to recognise it properly. So people living with ME are still disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. And it’s no surprise that CBT or ‘talking therapy’ does little to alleviate critical physical symptoms.
In August 2018, over 100 academics and 10 MPs published an open letter calling for a PACE trial review. Yet, as Topple reported, the UK General Medical Council (GMC) “refused to take action against the PACE trial authors” or to investigate further.
Activists and campaigners
So yes, activists and campaigners have been trying to raise the profile of ME/CFS. #MillionsMissing runs a “global campaign” to promote “health equality” for those living with ME/CFS. Because thousands of people living with chronic illness face a daily battle to access treatment and recognition.
In the UK, campaigners have worked tirelessly to expose the PACE trial flaws. Medical research has established that “the PACE trial showed no evidence that GET or CBT helps people with CFS”. But the government, the GMC and the DWP have closed rank and refused to take action. And still, there’s little, if any, coverage of this in the national media.
Thousands of people living with ME/CFS have already been made to feel invisible. But no matter what the media says, they won’t be silenced too.
Featured image via YouTube – #MillionsMissing
