DO TREATMENTS FOR ME/CFS WORK?

[Guest guest]

DO TREATMENTS FOR ME/CFS WORK?

www.youtube.com/watch?v=XLnxv_R80KM

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Last Spring I was speaker at the 2011 conference of our Partner Group in

Shropshire. Just as our Advice Line aims to empower callers to make

their own decisions, I set out to empower the audience - and also to

entertain them, of course. I hope you enjoy watching.

" Let's do that good old university thing and define our terms, " I begin.

" What constitutes treatment? . What are we treating? . What do we mean

by 'work'? . You can see it's actually a very complex question. "

I discuss our first poster: 'Stop Damaging Exercise Treatment for

Children with ME' and I emphasise choice: " It is your choice, what you

try and what you don't. Entirely your own choice. And in a family, it's

the parents' choice, talking to the child. It's not the doctor's choice. "

Describing my extensive experience of working with doctors, I point out:

" It's not really doctors versus patients, is it? It's those doctors,

versus those doctors, with patients trapped in the middle. "

I mention enforced treatment, quoting Dr Nigel Speight: " There is no

form of treatment for ME/CFS of such efficacy that it could ever justify

a coercive approach. "

To test the theory of Graded Exercise Therapy I demonstrate my

invention: Graded Growing Therapy, a practical experiment with an adult

assistant masquerading as a 6 year-old, causing such hilarity that the

camera falls off its mounting.

This leads, however, to a serious conclusion. I quote Dr Alan lin:

" If the child doesn't fit the theory then the theory is wrong " . After

this I discuss various potential effects of different treatments. I

relate the controversy over the use of rest, cognitive behavioural

therapy and graded exercise/activity therapy to the natural stages of

the illness, showing why such controversy has arisen.

Comparing the stages of the illness with recovery from a wound, I show

that the stage at which a treatment is used influences whether or not it

may be unsuitable. " That's why there's so much argument. "

I describe my own experience: " I thought, if I want to do sport ever

again, it's got to be something where the ball won't move until I tell

it to. " That provokes a gale of laughter. But " it wasn't until I was ready. "

I continue: " There is something else I haven't mentioned. And it's

something that's done to children. Is education treatment? ... We are

now seeing paediatricians treating attendance at school as if it were

part of a Graded Activity Programme. I am scandalised by that. "

I discuss a child's legal right to be educated in the best way for them:

" If all you needed was bums on seats, then all you would have to do if

you wanted to go to university is say, 'There's my attendance record.'

Clearly, it's pointless. "

" As a former headteacher myself, I know that children come in all shapes

and sizes and abilities and we should celebrate that. And if the child

is not well enough to do well and achieve anything at school, because

the child is too ill, then why is the child in school? "

I end by discussing how not to be taken in and how to consider what

category a treatment falls into. Is it potentially safe? What does it

cost? Is testimony trustworthy?

" Never suspend your own judgement, " I conclude.

Obviously this is only a flavour of the talk and I hope you enjoy

watching it all.

All good wishes

Jane Colby FRSA

Former Head Teacher

Executive Director

The Young ME Sufferers Trust