Friday, January 7, 2011

Myalgic Encephalomyelitis White Paper Response

ME is listed in WHO as ICD10 G93.3 as a physical neurological illness. The introduction of choice for ME patients would make a huge difference to outcome in this disease that has 250 thousand patients within the UK (more than HIV and MS put together), that can reduce life expectancy by 25 years and is potentially fatal (Jason et al shows the three leading causes of death as heart failure cancer (of all types) and suicide).

Read the Myalgic Encephalomyelitis White Paper Response amended version 08.01.2011.pdf

Added 10.01.2011: Please click here to download Myalgic Encephalomyelitis White Paper Response in Word format

Here's the event page with explanation and instructions:

Replies to

White Paper choices in healthcare response:

• By email to

• By post to Choice Team, 11th floor, New King’s Beam House, 22 Upper Ground, London SE1 9BW.

They need to be in by the closing date of 14th Jan.



MpowerME said...

This response has been written by patients for patients, download the response add it as an attachment and email it to

you are welcome to make your own additions in bold so they stand out:)
don t forget to cc us at

We as patients feel that the Lightening Process (LP) , Cognitive
Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) is no choice
at all. We want equal access to appropriate specialists such as
neurologists cardiologists, immunologists and a fair diagnosis using the Canadian Guidelines, with correct testing and treatment.

This is the choice we want, not harmful CBT and GET which our shown by patient surveys to worsen condition. We condemn the Wessely school and their vested interests, and dominance in the NICE guidelines as an unfair representation of the facts which leads to discrimination which
is why they have been declared unfit for purpose.

Have your say tell them what you want from the NHS what choices you want :)

julia said...

HOW to take part

- Full instructions are in the links above incuding a sample covering letter

Download the response document via above links

Attach it or paste it into to your email

subject Severe ME choices response

send it to :

By email to

cc. us at so we can log the response figures

By post to :
Choice Team, 11th floor, New King’s Beam House, 22 Upper
Ground, London SE1 9BW.

Below is a sample for your email or letter let them know if you have
made additions, use bold so they can find them easily :

Dear Sir/Madam

I submit the following document for inclusion in the white paper consultation

I have submitted research links in the document which support this
submission and ask you not to reach any decision regarding provision of choice for ME patients
without fully exploring this evidence.

Anonymous said...

Thanks for your information!


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