APPG for ME – Meeting 22nd June 2011
As the meeting relates to children’s issues we have prepared a
few points we would like to make based on our experiences in
communication with parents of children and young adults.
The common theme of current treatment seems to be an
emphasis on rehabilitation with strict activity management
Children are not listened to - Parents are not listened to
We have an example of a teenager trying to take their own
life in hospital after being bullied into activities by
nurses and doctors, left in the corridor in the wheelchair;
with nurses being told not to help them and
parents too afraid to complain.
Another example of a young adult, severely ill, who
deteriorated drastically as the hospital team gave them
antidepressants and tried to rehabilitate. The family fought
hard to try to educate doctors and nurses. A neurologist
would not contact another neurologist knowledgeable about ME
because he did not believe in ME. Fortunately the health
services realised in the end that the family should be
listened to and instead of rehabilitation palliative care
was put in place. Invest in ME invited the palliative care
doctor to the 6th International ME conference and we were
told by a family member of this young adult that she was
very impressed by the science being presented and previously
unaware of all of it. She was also able to make contact with
an experienced ME doctor who was at the conference and they
have offered to help her in the care of this severely ill
Where do the doctors who are not experienced in ME go to ask for
advice in the UK when they encounter severely ill children with
ME? Judging by these examples and others which we have come
across it is clear that healthcare staff are generally not being
given the correct advice or training.
We want to also make it clear that Invest in ME
strongly opposes the so called SMILE study which is
investigating the effectiveness of the Lightning Process in the
treatment of children diagnosed with ME.
The Lightning Process is a Trademark NLP business which should
have no role in the treatment of ME patients, as the two
examples above demonstrably show how serious things can become
when children's own feelings and reality is being suppressed.
AYME and AfME are doing a great disservice to ME patients by
endorsing research into such a business as LP. Children need to
be listened to not brainwashed.
These experiments on vulnerable children, endorsed by one
charity purporting to represent children with ME, are a scandal.
Why is the emphasis not put on promoting, funding and
implementing biomedical research into ME?
We would appreciate these points being made and minuted at the
Thank you again for inviting Invest in ME to be part of the APPG
Chairman Invest in ME
Invest in ME
(UK Reg. Charity Nr. 1114035)
PO Box 561
Support ME Awareness - support biomedical research into ME
The Way Forward for ME - A Case for Clinical Trials
6th Invest in ME International ME/CFS Conference 2011
20th May 2011 Westminster, London