A Report from ME Awareness Week

Static Demonstration Whitehall May 12th 2006 - A Report by Alison Bailey

Patricia Hewitt, UK Minister for Health

I attended an ME Awareness Week “static demonstration” outside the headquarters of the UK Department of Health on 12 May 2006. The Department of Health is headed by Cabinet Minister for Health, Mrs Patricia Hewitt, who in the past, has been interested finding workable solutions for people with hidden disabilities at work.

There were no TV cameras or reporters. Turnout was quite low: the event clashed with a conference on ME. The sheer effort of getting to London for people with ME was too daunting for most. For me, the joy of meeting people with ME always strangely overwhelms me. I find them sane, open, kind, thoughtful, sensitive and helpful. Such nice people get ME. Or is it ME that makes people nice? Defences and masks which make some others difficult, are laid aside: they are real.

Most of the static ME demonstrators were middle-aged men, single, living on their own. Most were receiving full disability allowance. Some expressed fears about receiving it in future, with the “crack down”. They dread their next assessment for medical benefits. I explained to them what a “hidden disability” is and how it is just being fully recognised as real concept in the workplace.

Some had found a treatment that helped one or other symptom. None had tried my dietary regime. No one expected to return to work. All had lost productive careers and good incomes. One had worked on the railways, another had been a research scientist and another, another had helped people with addictions. Two faithful caring spouses plied their loved ones with refreshments and listened in silence as we spoke the same ME language to each other.

One lady in an electric wheelchair expressed sadness that she lost her job through ME some 15 years ago. Her employer had just dismissed her, something she could fight now under The Disability Discrimination Act. Sadly for her, there was no turning the clock back. Another man with ME was in the midst of an employment tribunal case - for wrongful dismissal. This is stressful for someone with ME but he could be making a legal precedent.

Can employers develop more flexible humane approaches to support people with ME in the first place? They could ask other employees to mentor them or help them out, as a development opportunity? Some colleagues would love to help. Employers owe staff with ME an extra special "duty of care", since no one else is helping them. ME sufferers return the commitment shown to them in the long run, as highly motivated employees.

These ME demonstrators’ hopes are focused on ME websites and on what ME volunteers are doing. For them, ME websites create an “ME world” in which their condition is not spurned or derided, but fully accepted. They are their bastion against debilitating negative messages from media, most doctors, many employers and society. The motto should be "Nothing about us - without us" Consult us on what you write about us.

I came away, shaken inside. I knew their suffering. One man had told me about the clear gaps or "lesions" in his brain as he had seen his own MRI scans (“there are white spots dotted throughout my brain. They thought I had dementia at first”). It made me remember the worst days of my mental disintegration when I thought I would never be “me” again.

I remember wishing that someone who had recovered from ME would tell me what it feels like - just to assure me that mental recovery is possible. Well, now I know what it feels like: it feels wonderful. Every day feels richly blessed, senses are purified and the world seems "new". The leaves on the trees are pure joy. I retain a child's feeling that I am seeing beauty for the first time.

Usually, after a long illness there is this feeling of the earth being touched with some special aura, which lasts a few weeks. For for me, this feeling is permanent. Surely this is worth all the years of eating a boring raw diet, the struggle to overcome this condition and to live again?

I deeply wish that those there at the demonstration, by some miracle, may experience the same restoration and blessings.