Wednesday, 22 June 2011

Invest in ME – Letter to the All Party Parliamentary Group for ME

http://www.investinme.org/IIME%20Campaigning-APPG%20AGM%20June%202011.htm

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.

Kathleen McCall

Chairman Invest in ME

Invest in ME
(UK Reg. Charity Nr. 1114035)
PO Box 561
Eastleigh
SO50 0GQ
Hampshire
UK
http://www.investinme.org/

Support ME Awareness - support biomedical research into ME




Friday, 10 June 2011

O The Deep, Deep Love Of Jesus

I thought that it was about time I posted another of my favourite hymns -

O the deep, deep love of Jesus!
Vast, unmeasured, boundless, free;
Rolling as a mighty ocean
In its fullness over me.
Underneath me, all around me,
Is the current of Thy love;
Leading onward, leading homeward,
To my glorious rest above.

O the deep, deep love of Jesus!
Spread His praise from shore to shore,
How He loveth, ever loveth,
Changeth never, nevermore;
How He watches o'er His loved ones,
Died to call them all His own;
How for them He intercedeth,
Watcheth o'er them from the throne.

O the deep, deep love of Jesus!
Love of every love the best:
'Tis an ocean vast of blessing,
'Tis a haven sweet of rest.
O the deep, deep love of Jesus!
'Tis a heaven of heavens to me;
And it lifts me up to glory,
For it lifts me up to Thee.

Samuel Trevor Francis, 1834 - 1925


Monday, 6 June 2011

Voices From The Shadows - Trailer for the upcoming documentary

http://vimeo.com/24683179

Please watch this three minute trailer about M.E.


Voices from the Shadows Trailer from Josh on Vimeo.

A compassionate and moving exposé, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illnesses of the 21st Century.

I believe that the film is due to be released in the Autumn. For further information please go to http://www.facebook.com/VoicesfromtheShadows

N.B.: M.E. has been classed as a neurological condition by the World Health Organisation for over 40 years, ref ICD-10 G93.3.



Wednesday, 1 June 2011

WPI Response to the Science Editorial Expression of Concern

http://www.wpinstitute.org/news/docs/WPI_pressrel_053111.pdf

FOR IMMEDIATE RELEASE

Tuesday, May 31, 2011

“We are extremely disappointed that the editor of Science has published an “editorial expression of concern”, regarding the Lombardi et al. study. The authors of the Lombardi study believe that it is premature to conclude that the negative studies are accurate or change the conclusions of the original studies and we fully agree,” said Annette Whittemore, President of the Whittemore Peterson Institute. “Much of the work on this new retrovirus has yet to be performed, and we look forward to new studies which will support the results and findings described by these accomplished scientists. There has been no attempt to fully replicate this study to date. All of the negative studies have failed to use the methods, materials or processes used in the original study and many have been poorly designed. WPI researchers will continue to perform the critical research needed to help the patients who suffer from neuro-immune disease.” In addition, the WPI will continue to offer other scientific researchers the materials and methods necessary to perform a full and accurate replication study in the future.

About The Whittemore Peterson Institute

The Whittemore Peterson Institute is the nation’s first comprehensive translational research facility dedicated to neuro-immune disease research, treatment, education and outreach.

For a more detailed response by Dr Judy Mikovits, the corresponding author of the Lombardi et al study, please click on -

http://www.wpinstitute.org/news/docs/FinalreplytoScienceWPI.pdf