Thursday, 18 February 2010

Gettin' Manifestin' - Commitment 4

Focus today on children and young people with ME.

There is a general perception (well cultivated by certain people!) that ME strikes in the main middle-aged women. Naturally, there is a silent 'hysterical' in there between the 'middle-aged' and the 'women'! Not so - it is well documented that ME can strike any gender and age group - in some cases children as young as two. The Association of Young People with ME (or AYME, pron. 'aim') is a charity especially for young people and children with ME and of course their carers.

Parents/carers of children with ME face the particularly horrible possibility of being accused of 'colluding in their child's false illness belief' - effectively of helping them pretend to be ill. Or even the label of Munchausen Syndrome By Proxy, thoroughly discredited though that label should be by now after Sir Roy Meadows' disgrace.

If they refuse to accept that their child is mentally ill, they may find their child removed and sectioned under the Mental Health Act - as happened to Sophia Mirza (additional article here) whose cause of death was listed as CFS in 2006 and Ean Proctor (interviewed here in a video I have to warn you may find distressing but do beg you to watch) - who was removed from his parents at age 12 for five months - and whose 'treatment' by mental health staff included being thrown into the deep end of a swimming pool without float aids to try to prove he was faking paralysis (unsurprisingly, he sank and had to be pulled out). One can only imagine his terror, and the frantic distress of his family - whose 'crime' was to insist their son was not faking illness.

If I sound grim, that's because this makes me feel grim - grim and speechlessly angry. This is the twenty-first century - how can we still be permitting our asylums to be used as places to hide, even punish, the inconveniently ill? How can we allow psychiatric treatment (such as CBT) to be forced on children by threatening parents who refuse it with removal of their children? How can doctors tell the parents/carers of those with this vile illness that it is their fault their loved one is so ill?

4: Education

Guarantee that all children, young people and adults with M.E. who are well enough have access to education and receive appropriate support to fulfil their potential.

Key facts:

M.E. has been reliably diagnosed in children as young as two. The prevalence may be up to 4.6% in children, much higher than has been generally recognised.

M.E. was found to be the most significant cause of long term school absence among 885 individual sickness records received in six local education authorities (51%), followed by:
cancer and leukaemia (23%), general medical or surgical conditions (13%), musculoskeletal problems (12%), psychiatric disturbance and virus infections (5% each).

Our expectations:

Schools will have a statutory, rather than the current voluntary, responsibility to support the health and well-being of children with medical needs.

All schools will produce and implement medical condition policies, covering M.E. as part of
their duty to promote pupil wellbeing.

Ofsted inspections will include support for key health conditions including M.E. specifically.

The numbers of children affected by M.E. experiencing long term school absence will be


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  2. Addition - I just ran across this very lucid account by Shannen Dabson of what it was like to fight for education while suffering from ME. Shannen is a Young Advocate for The Young ME Sufferers Trust (TYMES Trust).

  3. Well written. The situation of children with ME is deeply distressing.