#SevereME is… missing solitude, privacy, unstructured time and autonomy, but most of all, autonomy.
My contribution to #SevereMEday – Quotes from patients.
It’s been far too long.
The only doctor I have ever known in 39 years, who KNEW about M.E, amongst a phalanx of medical professionals who DIDN’T have a CLUE has passed away.
I’m shocked and devastated. I always thought I would see him again.
I began my journey of discovery through him. He took over my care privately, after diagnosis, and would never take a penny for consultations. I would be taken miles lying flat in the back of a car, and suffer deteriorations, just to see him.
He once, very kindly, said: “I’ve learned everything I know about M.E from you”.
Reading his scientific research work, I could see he was being generous, but I knew he meant that our talks explored what it was like to LIVE with ME.
One of our greatest supporters, we’ve lost a remarkable, humane, human being. A bit of diamond.
This is a quotation by ‘Patient Advocate’ from the Invest in ME Conference 2013:
“I was astonished to hear her say that she would not know how to treat an ME patient. Perhaps she should be introduced to Dr. Irving Spurr. He would tell her – treat the ME patient with compassion, with understanding. He would explain the positive benefit of real doctoring – handholding, not handwringing. This is the very thing that I cannot get for my daughter – a doctor who understands how to be a doctor and what it means.”
And still looking to help us, by donating to ME research.
Dr Irving Spurr, Crusading GP inspired by a child’s plight – Daily Mail 22 Sep 2018
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.
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.
That for 250,000 UK ME patients there is:
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)
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
Black Dress Day May 31st 2018
This is my black chiffon cocktail dress and pearls.
Last worn for a Valentine’s Day party in 1985,
when I was 28 years old.
They are lying on the empty side of my bed.
The side on which my beloved would lie, when I was well.
The lover who gave me the Valentine’s card which they’d hand made for me.
The lover who wanted to be with a partner who could share
travel, holidays and the sights of the world with them.