A SELECTION OF JANE'S OTHER WORK
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
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
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
Long Term Sickness Absence due to ME/CFS in UK Schools:
Epidemiological Study With Medical and Educational Implications
Original study in Journal of Chronic Fatigue Syndrome 1997
Commentary in Tymes Trust Publications
number of consultants have had to apologise when their patients, who
were previously sufficiently recovered
to walk, became wheelchair-bound after rehabilitation therapy.
– The Illness and Common Misconceptions:
Abuse, Neglect, Mental
Tymes Trust Publications
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
Urged to Go Cautiously
in Physiotherapy Frontline 2001
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;
efficient and often home-based education is
important here, to fulfil legal obligations.
problems of children with ME/CFS and the enteroviral link
in Journal of Clinical Pathology 2006
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.
Points on the Education of Children with ME
in Special Children 2000
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
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.
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.
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