Thursday, 22 September 2016

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.

  • ·         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.

Thursday, 30 June 2016

My M.E. story

Action for ME strategy launch - Speaker's House, 29th June.

Hello, I’m Catherine, I volunteer as a policy research officer for Action for ME.

I feel very lucky to be here this evening. Lucky because I’m out with you at such a glittering event, while someone else is putting my children to bed.

But I’m lucky in a deeper sense. And this evening, instead of talking to you through powerpoint charts and statistics, as I usually do, I’m going to talk about my personal experience with ME, to explain why.

When I became ill with ME I was 18 and training full time to be a professional dancer. The illness began with sudden and strange loss of power, and pain, in certain muscles. The symptoms spread, my condition deteriorated and within a year I was mostly confined to bed, too weak to do anything other than very basic self-care.

I wailed and sobbed, in the way teenagers do, over the loss of my dance career, a career I worked so hard for and that gave me such joy and exhilaration. But within months my condition began to improve, slowly but spontaneously. The joy of taking a few more steps each week, of going outside into the fresh air again, of feeling some life come back into my muscles, it revived my spirits and I embraced a new path for my life.

While I was recovering I got myself a couple of A levels at a local college and 3 years after dropping out of the Ballet Rambert School I embarked on a degree course at the London School of Economics. I was about 80% recovered, I could cope with student life as long as I as I got 8 hours sleep per night. No all-night parties for me. But I found a hunger for ideas and a zest for life. I threw myself into student theatre production and clocked up straight As in my exams and dreamed of far flung travels. My starry eyed gaze was firmly set on my future once again.

But those two heady years of student life turned out to be my last gasp of carefree youth.

In 1993 the crippling symptoms of ME reared their ugly head again, but this time even more vicious than before. ME at its most severe is a total shut down of energy pathways to the brain as well as the body. I lost the ability to sit upright, I couldn’t lift a spoon to my mouth, I sometimes couldn’t turn over in bed. I also lost the ability to process information from TV or radio. I couldn’t read, speak more than a few whispered words, or write my own name. It was like inhabiting a world between life and death.

I lost the life I had painstakingly rebuilt for myself. And this time I never got it back. That acute phase of needing 24/7 care from my parents eased, but this time my recovery, for what it was worth, was very slow, punctuated by relapses, and very partial.

ME has left me disabled, needing some help with day to day life, and needing benefits to support myself. But I am one of the lucky ones. 

I am lucky to be here this evening. Because some people hit with the full ferocity of this disease as I was, or worse, make no improvement at all. They remain in that limbo existence for years, and even decades. The idea of coming to an event like this feels further away than the moon for them.

I now have a life that I love, and have carved out a place for myself in the world as a disabled person, and as a mother. But I find it almost impossible to extend my positive outlook on disability to people with the severest form of ME.

That's why I want to tell you about Emily Rose Collingridge, one of our community’s best-loved heros. Emily’s mother remembers how, as a feisty and passionate child, Emily’s health problems began at the age of six after contracting mumps. Despite struggling to attend school all her childhood and adolescence, her ME progressed and by the age of 15 its symptoms had her trapped in her own home. But she didn’t stop fighting. She worked from home as PR and fundraising manager for a newly formed charity for young people with ME and she continued charity work from her bed in her twenties until her ME became so bad that she had spent every day fighting for her life. During a small upturn in her health Emily, spent all her energy writing a book to guide others through the medically unknown territory of severe ME. Everything she did was, in her words, “to make something positive come out of my experience”. 

But Emily’s ME continued its aggressive path until she had to be tube-fed and was doubly incontinent, heavily dependent on morphine and with sensory intolerance so severe she couldn’t cope with the company of her own family. 

Emily tragically died at the age of 30. She belonged for a time to my local support group, but sadly I never met her.

I work with Action for ME because the charity’s purpose is to fight injustice, ignorance and neglect.
My own experience [see here], and that of my friends, has taught me a shocking truth: that the more ill you are with ME, the greater the ignorance and neglect you suffer.

There is no healthcare infrastructure for people like Emily. Apart from fellow patients, and her dedicated GP and consultant, no recognition of her terrible plight. This is because Emily was invisible to the world. Not just because she couldn’t leave her bed. But because there is still a denial in some sections of the medical profession that an illness, often given the innocuous sounding name of Chronic Fatigue Syndrome, could make a person as ill as she was.
It is far more comforting, as well as convenient, for all of us to think, and even hope, that ME could be a psychosomatic illness. Because then it could be turned around relatively simply. It need not steal young lives like Emily’s in their prime; and it need not cause them unendurable suffering.
But that psychosomatic paradigm betrayed Emily and it no longer stands up to scientific scrutiny.
I believe It’s time for a new strategy. One that offers hope of alleviating the suffering of some of the most seriously ill people in our society. And that fights for them to be treated with dignity and care.
I hope you’ll join me in whatever way you can, so that we can make this wish a reality.

Thursday, 14 April 2016

From scrounger to citizen

A personal journey

I have had a severe chronic health condition since 1988 – the whole of my adult life.
For much of that time I was embarrassed about relying on Incapacity Benefits, but not able to pinpoint the shame I felt. For most of these years I have not been able to work, socialise normally, often leave the house. But until quite recently I didn’t really think of myself as disabled as defined by the social model of disability.

All that changed 5 years ago with UK welfare reforms. 

With the migration from Incapacity Benefit to ESA in 2011 my identity was explicitly challenged. Through multiple encounters with Atos, DWP, Jobcentre and Work Programme contractors I was framed as a suspected malingerer, workshy and cheat. I was punished with benefit sanctions for being too ill to attend employment programmes that were designed to correct my workshy nature.

As I battled to resist this aggressive and crippling process of stigmatisation, what saved my mental health was the framework of disability rights. But to embrace it, I had to perform a kind of mental gymnastics. I went from protesting that I’m not lazy or criminal, to asserting the valuable work I do perform as a mother and unpaid researcher, to eventually being able to identify the socially and culturally constructed barriers that exclude me from participating in life as fully as I would like to, even within the intractable limits of my health condition. Only from this point can I begin to formulate demands for inclusion based on a sense of my rights. 

I’m not there yet, but I am on a journey – a journey from shame at not joining in and not “pulling my weight” to developing a sense of my own entitlement (yes, entitlement!) to join in and take part. Part of this involves developing a sense of the duty of others to remove obstacles or help me find adjustments where this is possible.

What took me so long to identify with the disability rights movement, you may well ask? There are many reasons. One of them is this:

The social model of disability was developed by people who could more easily pinpoint the structures that excluded them – the presence of stairs for wheelchair users, or prejudice based on looking “different”, for example. With an illness that’s invisible, inherently debilitating and not easily accommodated by ramps or assistive technology or the removal of prejudice, it’s much more of a mental feat to embrace the social model principles.  

It needs to be stretched and updated a little. But the social model belongs to us all. 

Between 2011 and 2013 I co-led a local peer support group. I witnessed the devastation of welfare reform on my community. I have seen people turn in on themselves through fear of surveillance and shame of claiming benefits. I’ve seen how the soul destroying work of navigating a hostile welfare system drains away plans and dreams for a better life. I’ve seen people’s self-esteem eroded by the feeling of being a burden on society. And this is before we even factor in the actual material cuts to financial support that limit choices and place a cap on ambition. 

My journey is not yet over.  But I want to share it with others who may be at different points on the same road. Welfare reforms have inculcated a sense of undeservingness among many disabled people. I want us to develop a collective consciousness of our entitlement to participate and belong.