My Protest Against 39 Years Of ‘Gaslighting’

 

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Due to the unremitting gaslighting which I experience from social-care providers, health-care providers, disability benefits assessors, care-package providers and even 3 ME organisations which should be closer to the heart of very Severe ME needs, I am, with sadness, changing my Facebook cover photo by way of protest.

I have endured 39 years of ‘gaslighting’ (look it up/ see below) and now, aged 61 years, I demand my right to some life beyond :
>>eat, toilet, deal with overwhelming burden of bureaucratic harassment, sleep. Repeat<<

From today, I will be using this quotation to head every correspondence with said agencies.
They may continue to refuse to hear it. I shall continue to say:

“I am here. This is the reality of my lived-life.”

– until my last breath.

Myalgic Encephalomyelitis is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969…

Result

My first use of this letterhead, in an email and follow-up hardcopy letter, has resulted in a respectful, appropriate and prompt response from the service to which I wrote.

Definition of Gaslighting

“Gaslighting is a tactic in which a person or entity, in order to gain more power, makes a victim question their reality. It works much better than you may think. Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators,narcissists, and cult leaders.

“Gaslighting is a malicious and hidden form of mental and emotional abuse, designed to plant seeds of self-doubt and alter your perception of reality. Like all abuse, it’s based on the need for power, control, or concealment.”
(Psychology Today)

#WeeksMissing #ME #SevereME #PWME #canyouseeMEnow

Severe ME is…

#SevereME is… missing solitude, privacy, unstructured time and autonomy, but most of all, autonomy.

My contribution to #SevereMEday – Quotes from patients.

#Awareness #pwME #CanYouSeeMEnow #EndMEcfs #NIH#NHS #ChronicIllness #Housebound #Bedridden 

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!

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

Black Dress Day 2018

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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.