On M.E. and Silence (M.E. awareness week 2013)

Last week I went on an Internet fast. It was meant to be like a silent retreat so I could focus on writing, away from the many voices on social media. I was looking forward to working on my M.E. book, and being productive.

But last week I found myself slipping into worsening health.

A month ago, I started taking a new drug that seems to help a bit. I have been writing more, doing more, enjoying myself more – and then this last week I was reminded that drugs are not magic. I have been tired, losing focus, unable to get my brain together, and by the end of the week I woke up and my body was screaming in pain, every muscle in acidic agony. Today I took a few steps and felt my legs buckling underneath me.

I am typing this on my ipad very slowly, whilst lying in bed; i don’t know how long my brain energy will last today. i am hoping that I will not slip back into relapse.

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It is ME awareness week and I want to write something on M.E. and silence. Last week I felt the silence of being able to retreat away from social media. Then, as I got worse, I felt the silence of being unable to speak.

For eighteen months after the birth of my boy, I found myself largely silent. I couldn’t speak to friends for more than thirty to sixty minutes (per day). I had to ration visitors. I couldn’t leave the house much or for long. I couldn’t write. Each day, I read Facebook over and over, and tried to write one thing a day, just to prove to myself and the world that I was still here. I had thoughts, but they were hard to lasso and tie down, they just swirled around in my head. Eventually, they became congested, a long traffic jam of ideas, noisily beeping their horns, unable to go anywhere. My mind had plenty of noise: my mouth was silent.

Over the past eighteen months of rest, my cognitive energy has gradually improved, though my mobility is still badly affected and I remain housebound. I have tried to make up for lost time. I have spoken.

There is much noise in the world about M.E. from the people in power. Last week, there was a piece by Michael Hanlon in the Sunday Times magazine portraying patients with M.E. as hysterical extreme activists (he used the term ‘terror campaign’) and the psychiatrists who are treating them as heroic victims. It is nothing new: this type of piece has been doing the rounds for the past twenty, thirty years. A psychiatrist receives death threats from a couple of people: therefore that proves all M.E. patients are hysterical and don’t want to accept that they have a psychiatric disease. This is the story that is told again and again in the papers; M.E. patients have a psychiatric illness but they don’t want to accept the stigma (or indeed, to recover, because they are psychologically invested in their illness). We hear the stories of the miracle cures, the sudden recoveries. There is much noise, and it skews our perspective.

We don’t hear the silence of the 25,000-50,000 people in the UK, with M.E. so severe they are too ill to leave their house or bed; too ill to write, to talk, to walk. We don’t hear that an estimated 10-25% of people with ME never improve, and only perhaps as few as 10-15% recover fully. We don’t hear of the ME patients who were moderately ill but made debilitatingly and permanently worse by the very treatments that are hailed as the ‘gold standard’ and prescribed by NICE guidelines as the only successful treatments.

In the UK, there is no treatment recommended for Chronic Fatigue Syndrome/M.E. other than Graded Exercise and Cognitive Behavioural Therapy. This is based on the assumption that CFS/M.E. is a somatisation disorder (psychosomatic), that symptoms are caused and perpetuated by a combination of muscle deconditoning, stress, false illness belief and exercise phobia, and that it has no physical origin. If you don’t get better from these methods, it not the methods but the patient who is viewed with suspicion. We don’t hear of the alternative treatments: indeed, I had been ill for seventeen years before I learnt of possible pharmacological treatments for M.E.

We don’t hear about the effects of a few psychiatrists’ opinions influencing the majority of doctors and social services workers: denying M.E. patients wheelchairs or other aids because that will ‘encourage’ them in their ‘illness beliefs’, the patients denied home visits because they ‘need to be encouraged to get out and about’. We don’t read about the autopsies of M.E. patients, showing they had inflamed spinal cords, and recording ME/CFS as cause of death – an indisputably physical origin to their illness. We don’t read about Rituximab trials in Norway, where, in a small, double-blind trial, patients with very severe M.E. showed significant recovery after being treated with a cancer drug. We don’t hear about the UK government refusing to fund a larger trial for Rituximab because the psychiatrists on the panel blocked the application.

We don’t hear these stories, and there is so much noise and untruth; they would be drowned out, even if they had the strength to whisper them.
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Sometimes i am aware of how unusual my position is: to be ill enough to experience these things and know the importance of it, yet well enough to write. That is why, today, I am pushing the envelope, just a little, to write this. My brain is not as clear as it should be. I will not be able to edit, polish, find an accompanying picture, respond to comments, provide the links and references for the facts I have cited. (I will update it with references and links as soon as i am well enough.) I will hit publish and then spend the rest of the day resting, hoping.

Last week, I intended to be silent online but writing offline. But for the first time in a long while, I was silenced by my illness.

Last week, I remembered the horrible powerlessness of not being able to speak.

In my silence, I felt the terror of being ill with no-one able to treat you, the vulnerability of not being believed, the loneliness of being in one room for years and years. I heard the whisper of the thousands and thousands of patients with severe M.E. who are too ill to write and cannot speak their story.

In my silence, I felt theirs.
Over to you:

There are two ways you can help:

• Stop the silence: At the moment, there is next to no biomedical research on M.E. Please write to your MP asking them to stop pouring all the funds into investigating psychosocial causes and treatments for M.E. and to fund biomedical research into the illness instead.
• Raise money for biomedical research: one easy way of doing this is to sign up to Easy Fundraising, and nominate Invest In M.E. as your chosen charity. Then, whenever you shop online, if you do it via Easy Fundraising, you can raise money for biomedical research, at no extra cost to you.

For further reading:

• When it hasn’t been your day, your week, your month, or even your eight years – Jenny Rowbory – on eight years of being bedbound with very severe M.E.
• A howl of desperation for those who cannot howl, by Scott Jordan Harris – a powerful piece on severe M.E. patients and the harm of Graded Exercise.
• Why should you care about M.E? My piece for last year’s M.E. Awareness Week.

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(Updated with links 16/05/13)