My Advocacy Efforts Mentioned In Westminster Hall Debate

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Stated today, June 21st 2018, during the ME Research and Treatment debate, Westminster Hall, UK Parliament.

Thank you so much Liz Twist for the acknowledgement and to Luke Pollard for the tribute.

That’s me!

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My Postcard To Caroline Dinenage, Minister for Health and Care

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From my MP, the Rt. Hon Nick Brown:
“Due to my obligations as Opposition Chief Whip, I will not be able to attend the Westminster Hall debate on 20 February. It is also convention that the Opposition Chief Whip does not sign Early Day Motions, so I will not be able to add my signature to EDM 271.”

So, I’ve just sent a postcard to Caroline Dinenage, Minister for Health and Care, for Thursday’s June 21st debate.
Except it’s this big. . . And my lived-truth message is on the front of it.

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What else does the UK Minister for Health & CARE not know about Myalgic Encephalomyelitis?

That for 250,000 UK ME patients there is: 
NO CARE
NO Appropriate Guidelines/ Policy
NO Teaching NO Knowledge
NO Doctor NO Consultant
NO Research NO Treatment
(ME is not taught in Medical Schools or Training Colleges)

WHAT ME PATIENTS NEED

6 POINT PLAN:
1). Allocate funding commensurate with disease burden for Biomedical Research into ME
2). Dangerous practices of GET and CBT to be removed immediately from NICE guidelines
3). ME to be taught in Medical Schools and training colleges including Acute & Community care
4). Appointment of trained ME specialists/consultants
5). All General Practitioners and Consultants to be informed
6). Treatment