The politics of stigma with ME/CFS

Last month my “shocking” report with Action for ME, Close to Collapse was released, showing the massive failure of the UK social care system to meet the needs of people with the chronic illness ME (otherwise known by the dreadful term Chronic Fatigue Syndrome)

For anyone new to M.E., forget the implication that we’re just “tired all the time”. ME is extremely debilitating, both physically and mentally. In fact, research shows the ME patient population has lower scores for physical function and quality of life of any chronic disease group.

So 97% of the 850 people with ME who took my survey needed help with 2 or more activities of daily living like going to the toilet, dressing or getting to a local shop. In terms of the Care Act, this means they met the main threshold of eligibility for social care in England. 

Yet only 6% were receiving a social care package. 

The news was not “shocking” to the ME community. Neglect, lack of support and even hostility from health and social care services are, sadly, the norm for us. Those who are most in need of help are too mentally and physically incapacitated to negotiate the social care system or any other bureaucracy independently.  That partly explains the care gap statistics from my research.

However, the news probably won’t have caused a ripple outside the community of ME sufferers either. Examples of a social care system on the point of collapse are all around us. Back in 2013, two out of five disabled people surveyed by Scope said they lacked the support for basic care needs like washing and dressing.  People with ME are no exception in having unmet care needs. 

But there is a bigger story behind this scandal than the crisis in social care funding that we are familiar with. There is a reason people with ME struggle to access their entitlements which is unique to this contested illness and its embattled history. You could call it “stigma”; but it’s unlike the stigma of HIV or mental illness. 

Unpacking the stigma of ME means telling the story of a power relationship between an elite of professionals who, in the vacuum of medical knowledge of this disease, has placed itself in charge of our “care”, and a growing international movement of resistance by people with ME to their dominant narrative about our illness.
 

The nature of stigma in ME 

 

In my survey with Action for ME, 58% of people who had a social care assessment said they didn’t think the assessor accepted their illness or disability as genuine. 38% of those who may have qualified didn’t ask for help out of fear that they would be judged as undeserving of help, not considered genuine, or simply they wouldn’t be understood when trying to explain the impact of ME on daily living. They said things like:

“The social worker told me that "everyone gets tired" 

“The social worker said I should go swimming every week and do more exercise even though she could see I couldn't even stand up without falling onto the floor and my legs were going into visible spasms on that day.”

These statements from social care professionals echo messages in the media just a few weeks ago claiming that ME is “not a real illness” and can be cured by positive thinking and exercise.  Statements of this kind have been popping up in the mainstream media for the last 30 years. They occur every time a certain highly organised and highly influential group of psychiatrists publishes the result of a trial of treatment for ME involving exercise therapy and/or cognitive behavioural therapy claiming positive results. It would not be surprising if they had influenced social care professionals’ attitudes to people with ME.

The peculiar stigma of ME/CFS is this: as author Toni Bernard put it, we have been branded not credible witnesses to our own condition.

This small group of psychiatrists has since the late 1980s systematically disseminated the hypothesis that ME is not an organic illness but an illness of misperception of reality. 

They are not the only ones to have cast doubt over the legitimacy of a condition for which there are few physical signs and, as yet, no biomarkers. But they have vigorously theorised a psychosomatic cause for ME and steadfastly promoted it over three decades despite all evidence to the contrary.

The theory goes like this: the symptoms of M.E./CFS are the result of physical deconditioning brought about by activity avoidance due to the mistaken belief that they have a serious illness and the irrational fear that activity or exercise will make them more ill. I label this the FAAD theory: fear-activity avoidance-deconditioning. (An early variant of it is here)

Throughout their publications you find the same characterisation of ME patients and how to treat us. Crudely put: we bother doctors all the time when there is nothing really wrong with us. Paying attention to our symptoms and sending us for laboratory tests is not only a drain on NHS resources but will fuel our faulty belief system. Above all, we are to be discouraged from identifying as “disabled” and seeking support and social security benefits. We should, naturally, be treated with compassion but only inasmuch as delivering us from our tangled web of misperception and coaxing us out of our sedentary lifestyle.

The politics of PACE

 

There has never been any proof that FAAD is the cause of the debilitating symptoms of ME to support the treatment with CBT and GET. In fact, there is mounting evidence against it. Research by the ME Association suggests that exercise therapy causes harm to  70% of ME patients.  And there is now compelling evidence of an abnormal physiological response to exertion. 

The FAAD theory of ME is now rejected by the international biomedical research community  international biomedical research community in favour of a neuro-immune hypothesis. 

Yet the FAAD hypothesis will not go away, at least in the UK. 

It will not go away because there is so much hanging on it. The FAAD theory was the rationale for multi-million pound government research funding (the only government research funding into ME/CFS prior to 2012), and a network of NHS “fatigue” clinics tackling dysfunctional beliefs through “cognitive restructuring” (CBT) and reversing deconditioning through graded exercise therapy (GET). 

The FAAD theory is the basis of consultancy work carried out with insurance firms on “managing” disability claims. It also informs the advice on taking a “biopsychosocial” approach to chronic fatigue as “abnormal illness behaviour” given to the Department of Work and Pensions. 

The FAAD proponents enjoy high status with the UK medical community and society. Nowhere is the tension between their interests and the patient community more apparent than in the current wrangle over PACE.

PACE was a £6 million pound government funded trial of the effectiveness of CBT and GET for M.E. compared to standard medical care that had as its rationale the FAAD theory. At the end of the trial there were no significant improvements in any objective measures of functional status, such as walking distance or employment status from any of the trial groups. There were modest benefits for self-reported fatigue for 15% more patients receiving CBT or GET than the control group. But two and a half years after treatment even these very modest initial benefits disappeared. People who received CBT and GET fared no better in the long term than the control group who didn’t. 

Yet the headlines of UK medical journals, parroted by the mainstream media, talk of “fear of exercise” in ME patients, and “long term benefit” through CBT and GET. 

Even worse, the “science” behind the modest initial findings of self-reported improvement is so methodologically flawed that a group of US scientists are petitioning The Lancet for an independent analysis of the PACE findings. To mention just one contention: the measures for recovery were adjusted downwards half way through the trial so that a patient could be more disabled at the end of the trial than they were at the start and still be classed as “recovered”. The PACE investigators are stubbornly refusing to release their data for independent analysis, despite a ruling by the Freedom of Information commissioner against their reasons for not doing so, and in violation of the data sharing policy of the PLOS One journal they published in.

In their refusals, they cite the “vexatiousness” of patients, and even fellow scientists, having the temerity to question their research.

The irony is we may be just one major drug trial away from a treatment for ME that works by suppressing the body’s immune response. Small trials of Rituximab suggest it could promote recovery in 30% of patients and significant improvement in a further 30%. It would confirm what the US Institute of Medicine has concluded: that all available and growing biomedical evidence points to ME being a neuro-immune disease.

But don’t expect to hear the psychosomatic FAAD theory of ME debunked in the UK media or medical journals any time soon. The stakes for its proponents are too high and their influence within the establishment too deep.

Meanwhile, many people with severe ME – the 25 – 30% who are too ill to leave their homes - eke out an existence below the radar of health and social care services. For  many years I was one of them: dismissed, abandoned, and achingly isolated from the rest of society. Our condition barely exists in medical textbooks, or is classified under Medically Unexplained Symptoms: i.e. not of the same order as other disabling conditions. 

The stigma of ME is not the stigma of mental illness, as the psychiatrist’s spin goes. It is the stigma of a pseudo-illness. The US ME activist Jen Brea describes her darkest times when she went from being a Harvard doctoral student to being bedbound with ME:

I spent many days waking up disappointed to still be alive not just because I was sick, but because I was sick with a disease that has no name, or face, or voice, that in the public consciousness does not exist…It’s one thing to disappear. It’s another thing to disappear and have no one notice or understand why.

The stigma of ME is almost as hellish as the illness itself.

To join the fight against this injustice join MEAction.Net.

And thank you for reading this far! 

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[1] This great phrase was originally coined by former law professor with ME Toni Bernhardt