#MillionsMissing protest London 12.05.17

This is the draft of an address to be given in front of Dept of Health, Whitehall.

Our small gathering here today is just the tip of the iceberg. 

We are standing in for the Millions Missing worldwide: the millions of people affected by the multi-systemic disease ME aka chronic fatigue syndrome who are too ill to be here today. 

There are 250K people in the UK with ME and many can’t be here because they've been trapped in bed for years by this most crippling of illnesses, and they’ve been abandoned by our healthcare system and forgotten by the world.

The shoes you see here belong to some of those who can’t be here in person but who want you to hear their voice and witness the injustice they face. And they want the Dept of Health to listen and to act on this injustice.

The neglect of people with ME by governments and their health authorities is a global scandal. And there are protests like this one happening across the world today. 

But here in the UK we’ve endured something perhaps even more cruel than neglect of our disease; we’ve had a deliberate cover up. 

I want to tell you about it because you won’t read it in the press, and your doctor probably doesn’t even know about it.

Here in the UK we’ve endured a whitewash of our disease that has propelled the careers of a powerful group of clinicians and researchers, while we patients have seen no benefit, and many of us have even been harmed by their programme.

I became bedridden as a result of their so-called treatment.

The scandal of ME in the UK goes by the name of PACE.

PACE was a research trial of treatments for ME aimed at modifying patients’ thoughts and behaviour. It was based on the notion that ME is not an organic disease but a psychosomatic disorder, a view rejected by The US Institute of Medicine and the WHO. 

Among the international scientific community PACE has become a byword for dishonest and unethical research practices, for the vested interests of an elite taking priority over patients’ health.

PACE researchers manipulated their methodology so you could be more disabled at the end of the trial than you were at the beginning and yet be classed as recovered.

PACE researchers illegally withheld their data from fellow scientists to avoid scrutiny of their methods.

PACE researchers ignored the overwhelming evidence showing that their graded exercise therapy made many people’s illness even worse than it already was.

PACE researchers then said that those patients who dared question their results were a deranged or extremist mob just out to make trouble.

PACE research showed no improvement in ME on any objective measures from their treatment of cognitive behaviour therapy and graded exercise, in trial that costs £6 million of taxpayers’ money.

And why aren’t these researchers being held to account? Follow the networks of power and influence in UK medicine and you will see that PACE researchers and their great patron occupy the highest of ranks in the medical establishment. Their reputations appear to be untouchable. We the patients are allowed no say in

Meanwhile PACE and its discredited hypothesis continues to drive NHS policy on ME, and in turns impacts how people with ME are treated by welfare and social care systems. Patients are still routinely told to get out and exercise. People’s health continues to be put in danger.

Right now children are being subjected to trials of graded exercise therapy by colleagues of the PACE team at the University of Bristol.

The Dept of Health can no longer stay silent. The Dept of Health must not be complicit in the scandal of PACE. 

We demand an end to trials of graded exercise therapy on children.

We demand that NICE reviews its guidelines on ME to remove the harmful influence of psychiatrists associated with PACE.

And we demand that Dept of Health take the lead in promoting the new research agenda emerging from outside the UK which gives us hope and consign the PACE agenda to history.

The millions missing here today are crying out for our government to invest in research into the causes and treatments for ME. We need science that is honest and ethical and puts patients first.

The fight against the rotten WCA and ESA system must go on

So the Conservatives have found their Compassion. Last week, Secretary of State for Work and Pensions, Damian Green announced that retesting people with lifelong conditions and progressive diseases like Parkinson’s every six months to see if they’ve recovered is pointless. Under new Employment and Support Allowance (ESA) rules, reassessments for those with certain incurable conditions will be stopped.

So does this mean the legendary cruelty of the Work Capability Assessment, the test to decide who’s fit for work, will become a thing of the past? 

Image courtesy of @RednorthUK

With this latest policy nod to fairness and compassion, the Tories appear to want us to move along please, to bury all mention of the WCA and avert our eyes from the massive policy failure of the broader Employment Support Allowance (ESA) in getting more disabled people into work. ESA will become merged into Universal Credit and lost in its devilish complexity. And a shiny new Work and Health Programme is awaited for people judged unfit for work. Very little is known about it. The Green Paper which will announce the policy has been delayed for months. 

What seems certain is that the brutal and nonsensical criteria of the WCA will remain in place, as will the punitive rules and regulations governing the receipt of sickness benefit. Despite new names, there seems to be no plan to dismantle the architecture of ESA, with its questionable legality and its callous assault on disabled people’s rights.  

Work Capability Assessment

The awaited Green Paper on work and health will not overhaul the Work Capability Assessment or challenge the ugly parody of a “biopsychosocial”(BPS) model on which it is based. The BPS model of disability used in the WCA does not address the structural barriers in the labour market that lock disabled people out of employment. Nor is it grounded in medical science but on the ideological premise that most people claiming sickness benefits are malingering. Its veneer of scientific credibility, long exposed by campaigners like Mo Stewart, has now been busted by academics as the antics of a discredited US insurance company to avoid paying out on disability claims.

The WCA notoriously assesses spurious tasks like picking up a pound coin or putting a handkerchief in a top pocket as a proxy for fitness for work

The WCA is based on neither a social model, nor a medical model, but a Medieval model of disability which blames victims for their misfortune.

Conditionality

The Green Paper is unlikely to alter the harshness of the conditions that some disabled people have to meet in order to receive benefits. These are often akin to mountaineering without a safefThis is called conditionality. Research in 2014 showed that three in five people in the ESA Work Related Activity Group (WRAG) were forced to do work preparation activities in return for benefits that were incompatible with their health condition or impairment, and yet no adjustments were made by their job coach to enable them to comply. This constitutes potential discrimination by government officials and their private contractors against the very citizens they’re supposed to be “supporting”. 

Sanctions

The Green Paper is unlikely to change the fact that disabled people can be stripped of two thirds of their income under ESA by a “secret penal system” which judges them guilty until they prove themselves innocent.  This is the benefit sanctions regime, a punishment system for those who fall of the cliff-edge of conditionality. More than 4 in 5 survey respondents were terrified of being sanctioned because their health or impairment prevented them from doing compulsory tasks, which probably explains why their health, their confidence and their aspirations all plummeted as a result of being in the WRAG. 25% of ESA sanctions were successfully challenged and overturned last year. But how many more were prevented from challenging a sanction by lack of legal advice and how many experienced destitution while they waited for a sanction to be overturned?

Destitution

Perhaps worst of all, the Green Paper won’t reverse the shocking £30 pounds a week cut to the livelihood of disabled people judged unfit for work but placed in the WRAG. From next April disabled people faced with long term unemployment due to the severity of their health condition or impairment will be forced to live on around £73 a week and probably have to choose between eating or heating. This is the same low rate of benefit as JSA, designed to tide non-disabled people over for short periods of unemployment until their next job. This policy legacy of George Osborne aims to motivate ill and disabled people to recover. It is a strident breach of disabled people’s right to an adequate standard of living under the UN’s Convention on Economic, Social and Cultural Rights and a breach of government’s duty to ensure the improvement, not regression of the living conditions of its disadvantaged citizens.

In total ESA and the WCA have been responsible for turning back the clock on the disability rights agenda. ESA is a policy that casts disabled people as non-citizens with no right to equality, dignity or freedom, who must be coerced and corrected for their own good.

So we will not accept crumbs of compassion and move along. We must all keep up the fight against a benefit system for ill and disabled people that is abusive and rotten to the core.

What is the StopGET petition and why should you care?

Sign this petition to prevent risk to children's health from an unethical research trial

Imagine you get a mysterious and highly debilitating illness. It takes away much of what you love in your life. Your doctor says there may be a treatment that can help. It’s not a drug but a behavioural reprogramming therapy developed by psychiatrists. It’s safe, she says. And proven to be effective in a study published in The Lancet.

Sounds odd, but you go ahead with the therapy with an open mind. It consists of getting you to gradually increase your activity levels and exercise. Not only does it not improve symptoms but the behavioural regime prescribed actually makes your illness worse. Your therapist is unsympathetic and says you are showing a negative attitude and that your entrenched belief system is what is keeping you ill. When you become so ill you can’t physically get to the clinic any more, your therapist berates you for not complying with the treatment, and strikes you off their clinic register.

This is what happened to me at age 19. The treatment was Graded Exercise Therapy (GET) for Mylagic Encephalomyelitis (M.E.), also known as chronic fatigue syndrome (CFS).

Had I been a few years younger, the outcome could have been a lot worse than being left severely disabled without any medical care. My therapist could have alerted my Local Authority, who could have investigated my parents for neglect of my medical care because they stopped bringing me to clinic appointments. At worst, I could have been locked in a psychiatric institution for enforced “treatment”, as happened to Sophia Mirza, who died following her ordeal.

GET has been prescribed for children and adults with M.E./CFS in NHS clinics for years, but now a research trial is seeking to prove its effectiveness in children. 

Why StopGET?

• ·         GET is currently being trailed on 100 children with M.E./CFS in a study called MAGENTA, with a view to a much larger trial in the near future.

• ·         There is overwhelming anecdotal evidence of harm and increased disability resulting from GET in adults and children.

• ·         The consent forms for the MAGENTA trial do not disclose the significant risk of harm from GET.

• ·         The evidence base for the efficacy of GET in adults with M.E./CFS has now been demolished. The Lancet has faced calls from 40 scientists worldwide to retract the controversial PACE study which wrongly claims 60% of patients improve with GET.

• ·         121 Families who withdrew from, or refused, GET for their children have faced investigation for child abuse or neglect. To date, none of them have been found at fault.

• ·         M.E./CFS is the most common cause of school absence in children.

GET may help some individuals with a diagnosis of chronic fatigue syndrome. But in a survey by the ME Association, 74% of respondents reported that GET made their M.E. worse, leaving some people dramatically and permanently more disabled as a result. Current research shows abnormalities in ME patients’ energy production systems including a dramatic slowdown in cellular metabolism. This probably explains why ME patients cannot generate the resources to exercise as MAGENTA and other graded exercise studies recommend. GET is based on a psychosomatic, or "cognitive behavioural" model of M.E. which is no longer sustainable.

At the moment there are no biomarkers to distinguish which group of patients may benefit from the treatment, and which group may be harmed by GET. 

None of the information concerning possible risks appears in MAGENTA’s participant information sheets, raising serious concerns about whether the children in the trial, and their parents or carers have given genuine informed consent.

Please help us stop MAGENTA, and all trials of graded exercise therapy in ME.

Sign and share the petition to #stopGET now! http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/