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ME - The New Plague 2



Jane Colby has written extensively on ME for many years. Much of her work explains how the illness affects children. You can find a number of her articles (including many of those quoted below) here

The subliminal (secret) message you’re giving your body when you take care of it is:‘I love you, I know you’re going through a bad patch but I’ll make it as painless as possible.’ Loving and caring for your own sick body is one of the best ways to help it heal you.

Diet in ME - is it such a big deal?

Tymes Trust Publications

When, back in 1990, Dr Dowsett explained to me that ‘the problem is, we have no statistics showing the pattern of ME in schools’, I said ‘So let’s get them.' If I had realised then that it would take us five years, during which I was myself still ill with ME from a virus related to polio, I might not have considered it so readily. […]

There was extreme reluctance to reveal statistics to us in some quarters.

Long Term Sickness Absence due to ME/CFS in UK Schools:

An Epidemiological Study With Medical and Educational Implications

Original study in Journal of Chronic Fatigue Syndrome 1997

Commentary in Tymes Trust Publications

A number of consultants have had to apologise when their patients, who were previously sufficiently recovered to walk, became wheelchair-bound after rehabilitation therapy.

ME – The Illness and Common Misconceptions:

Abuse, Neglect, Mental Incapacity

Tymes Trust Publications

In the first and most severe stage, rest, recuperation and good old-fashioned convalescence are needed. The patient is already likely to be functioning physically at or near their maximum tolerable levels.

Physios Urged to Go Cautiously

in Physiotherapy Frontline 2001

The Tymes Trust has reported that many affected children struggle for recognition of their needs and feel bullied by medical and educational professionals. Children should have time to recover sufficiently before returning to school; sustainable, energy-

efficient and often home-based education is important here, to fulfil legal obligations.

Special problems of children with ME/CFS and the enteroviral link

in Journal of Clinical Pathology 2006

When a formerly fit child suddenly develops a severe case of ME, the decline into ill health can be dramatic. […] Exhaustion and pain can be extreme, but because of the typical delayed effect [after effort] teachers will not witness this and may find it hard to believe that the child is really as ill as parents may say.

Ten Points on the Education of Children with ME

in Special Children 2000

The worst thing can be the stress caused by worrying that one ‘should’ be asleep at night. I believe that the sleep police have a lot to answer for, using terms like ‘sleep hygiene’ as though one is dirty if one cannot sleep during the prescribed hours. Such stress prevents relaxation and makes it less likely that sleep will come. You will probably be amused by the poem about sleep that I once wrote, in Mummies Aren’t Supposed To Cry.

Banned from sleeping [in praise of naps]

Tymes Trust Publications

The following items are unavailable online

In the end, our study showed ME/CFS was the single biggest cause of long term sick leave in British schools, bigger than cancer and leukaemia combined. No other illness came close. In short, we'd found a cluster pattern, a plague, in our schools.

The editors write: 'Davida and Goliath was written by a woman who had this disease, known in England as ME. She describes her battle to have a major study she did on the prevalence of ME in British schoolchildren taken seriously.'

Davida and Goliath, first published in the US in That Takes Ovaries

republished in Women's Health : Readings on

Social, Economic, and Political Issues

Univrsity of Wisconsin, 2009

I have ME myself, and did many of the wrong things before learning how to pace my life. The best way to describe the odd sensation I get after walking too far is that the muscle fibres seem to be twitching independently, as if a sparkler had been set off inside my leg [fasciculations]. As a former dancer, climber and squash player, I can tell you that this is entirely different from the sensations in a healthy muscle, however unfit.

Health Matters, in Aerobics and Fitness World 1993

For me, it was incomprehensible. I could only lie down or occasionally shuffle painfully to the loo. I had to pull myself upstairs by the arms, and meals which had been prepared for me would go cold as I struggled for strength to chew. Heaving my body to its feet, I seemed to have a black hole in my stomach sucking at every ounce of effort I produced. In this situation, the only way to cope is to accept the reality of disability. It took me some time.

An Invisible Disability, in Disability Now 1994

The relapsing nature of ME often misleads individuals into believing they have recovered, whereupon they resume a 'normal' life pattern and symptoms return. This needs to be fully understood by headteachers and all those who work with the child or student.

The School Child with ME

in British Journal of Special Education 1994

No-one is advocating diagnosis by medically unqualified people. But since early recognition appears to be crucial, it is worth playing safe if you suspect a case. [...] If staff become frustrated making special arrangements, they should remember that their frustration is nothing to that of the pupil.

The Team to Beat ME : understanding myalgic encephalomyelitis

in Head Teachers Review 1993