Skip to main content

Severe M.E. Day 2015

In 1993 I was effectively paralysed due to very severe M.E. and I lost the ability to speak, feed myself, sit up or write my own name.

Like many pwme who don't respond to, or in my case deteriorate, following NHS "treatment" with Graded Exercise Therapy, I had been abandoned by my local GP practice a long time ago. My family was shunned. We were told my disease was a result of my negative mindset, or was "just" depression.

I had to be spoonfed at this time because I had lost the strength to lift food into my mouth. At one stage, I began to also have difficulty with chewing and swallowing. My parents, who were then my full time carers, became worried and didn't know what to do. I couldn't physically get to the GP surgery, so they took me to A&E on a stretcher.

The registrar in A&E declared, after a 5 minute examination of my nervous reflexes, that there was nothing wrong with me. He did, however, propose to keep me in hospital for treatment. The treatment for my difficulty with swallowing, it turned out, was to put me on a psychiatric ward and not spoonfeed me so that I would get so hungry that I would quit my histrionics and thereby regain my ability to eat independently.

That was the most terrifying of all my encounters with the healthcare system in my 30 years of ME. But there have been countless other medical micro-abuses along the way: dismissals, barely-concealded derision, outright hostility. Many are too painful to recall in detail. I can't now go and see a doctor of any kind without experiencing symptoms of anxiety and profound shame. I soldier on with all sorts of symptoms and difficulties, whether ME related or not, that ought to warrant medical attention, just to avoid the potential trama of the doctor's surgery.

But my experience is nothing compared to what others with severe ME have endured. My mum declined the "treatment", took me home and cared for me and luckily my difficulties with swallowing subsided. Others haven't been so lucky. Look at the case of Sophia Mirza, who was sectioned because she refused Graded Exercise Therapy, and later died. Although the General Medical Council sided with the authorities and failed to uphold her mother's complaint,  I'm in no doubt that her abuse and neglect at the hands of those authorities, including social services, contributed to her death.

I will keep sharing these stories. Until the myth that ME is "not that bad" is squashed, and the abuses we have endured are recognised and brought to light.

(edited June 2018)


  1. A very moving post Catherine. In all honesty, it makes me feel 'lucky' for only having moderate ME.

    That people have had to go through what you've been through is a damning indictment of the medical establishment and health organisations, as well as government and society as a whole. Time for acceptance, investment and support at all levels for all people with ME. I'll share your post in the hope it helps spread the message.

    1. My feelings, entirely, Gwenfar; all strength to you, Catherine.

    2. Thank you. It makes me feel incredibly lucky too that my M.E. is mostly moderate now. I should have added that the very severe episode I described lasted just four months and I was lucky enough to emerge from very severe to "just" severe spontaneously.

  2. Agree so much. Very moving, and puts moderate ME in a whole new light. Xxx


Post a Comment

Popular posts from this blog

Sickness and the Social Model of Disability

This is the first part in a series of blog posts that will explore the uneasy relationship between chronic illness and the social model of disability. From my perspective as a Sick person (more on that controversial word next time) I will explore why people with chronic illness often feel excluded from the Disability Rights Movement (DRM) that emerged out of the social model. But rather than reject the social model I’ll discuss how we, the Sick community, could claim it for ourselves and what a social model of chronic illness would look like. The crucial distinction between impairment and disability lies at the heart of the revolutionary Social Model of Disability that emerged in the 1970s – the model that underpins the disability rights and independent living movements. To paraphrase it simply, impairment is loss of bodily function, whereas disability is disadvantage imposed upon people with impairments due to hostile social attitudes or inaccessible physical environments. 

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 healt

Fulfilling Potential? ESA and the fate of the Work-Related Activity Group

We want Support, not Sanctions (Click here to tell your MP if you agree) The report into Employment and Support Allowance (ESA) that I’ve spent much of the last year producing has been released today. It reveals one more piece of the jigsaw of attacks on the dignity and livelihoods of disabled people under this Government (the scrapping of Disability Living Allowance, the closure of the Independent Living Fund, the notorious Work Capability Assessment and the equally infamous ‘Bedroom Tax’ being others). I have looked at the experience of sick and disabled people like myself, subjected to an aspect of ESA policy that promised to empower us, lift us out of poverty and include us in society. That is, the creation of the Work Related Activity Group (WRAG), which sends us on back-to-work schemes as a condition of receiving sickness benefit (or ESA). Just 5% of us in the WRAG on the main scheme – the Work Programme - have moved into work since 2011. I wrote this report to