APPG for ME
APPG for ME AGM 22nd June 2011
An APPG for ME AGM is to be held on 22nd June 2011.
IiME were recently invited to be part of the All Party Parliamentary Group for ME. Unfortunately, due to some personal issues, IiME trustees were not able to participate in person at this meeting.
Instead we have sent the following to the chair of the APPG, Mrs Annette Brooke MP.
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 regimes
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 patient.
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 APPG meeting.
Thank you again for inviting Invest in ME to be part of the APPG for ME.
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