Stalwart champion of the ME community retires after distinguished parliamentary career | 01 May 2020


See Feature Article in The Daily Telegraph.

ME advocate and parliamentary champion, the Countess of Mar, retires from The House of Lords after 45 years.

Earlier in the week the Countess of Mar wrote to members of Forward-ME to say that she would be retiring from the House of Lords as from today.


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

The Countess of Mar

I was very sorry to learn about this decision and have spoken to the Countess of Mar to say that I fully understand her reasons to retire from the House of Lords after a long and very distinguished parliamentary career.

The Countess of Mar has taken on many roles in both a personal and parliamentary capacity to help people with M.E.

Her chairmanship of the Forward-ME Group, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions and securing the PACE trial debate, and helping with difficult individual cases.  Above all just being there to give sage advice when needed.

As Margaret said in her letter, she is still going to continue to be involved with the Forward ME Group.  So, we are not losing her completely and she will also continue as a Patron of the ME Association.

On behalf of the ME Association, and the whole M.E. patient community, I would like to thank Margaret for all she has done for us, and wish her a long and happy retirement.

The Countess of Mar’s Letter to Forward-ME Members

Extract

“After a great deal of thought and with some initial regrets, I have finally bitten the bullet and have decided to retire as a member of the House of Lords with effect from 1 May.

“As you know, I haven’t been well for some time and, although I am much better than I was, I have realised that I cannot be relied upon to do my Parliamentary duties to the standard that I would wish. I also find the prospect of travelling and getting about the House daunting.

“After reaching my 80th year and having been a member of the House for nearly 45 of those years I feel that, while enjoying the huge privilege that membership has afforded me, I have done my duty. 

“We haven’t had a Forward-ME meeting since last summer and I am conscious that I may have been neglecting you. Looking back, I believe that between us we have managed to change the perception of M.E. by most of both the medical profession and the public.

“There is still some way to go before we know cause/s and cure, but we are well on the way to finding them. I am confident that the NICE guideline development group are determined to get the new ME/CFS guideline right. I suspect that when this is published much will change for people with M.E. 

“My retirement from the House does not mean that I want to break with Forward-ME yet, unless you think that I should. Our continuation as a group depends upon all of you.

“It is a mark of respect in the wider community that we have been asked to be represented both in the U.K. and internationally, respect that we have earned by working quietly and determinedly as a cohesive group. I am very relieved that, under Carol’s leadership, the APPG has been resurrected. ”

The Forward ME ten-year anniversary celebrated in 2018.

Daily Telegraph

‘I want to go out on a high’: Meet Parliament’s last Countess

The Countess of Mar, Britain’s only female hereditary peer, is stepping down from the House of Lords after 45 years

Extracts:

Following a second divorce in 1981, after five years of marriage to John Salton, the Countess wed her third husband, John Jenkin, now 79, in 1982.

They agreed she should give up her day job with British Telecom and focus on the Lords full-time. Yet it was only after she suffered a catastrophic accident in 1989 that she fully realised the power of her peerage.

The couple were ‘dipping’ sheep on their farm in the Malvern Hills when some of the organophosphate liquid splashed inside her Wellington boot. “Three weeks later it was as though I’d been poleaxed,” she recalls.

The poisoning sparked 18 months of chronic fatigue syndrome (ME), which affected the Countess’s memory and speech. The experience prompted her to embark on a lifelong campaign for better awareness of the condition, dismissed by many at the time as “yuppy flu”.

“Psychiatrists would say – it’s all in your head. They’d been working on the principle that everybody was a shirker or could be cured by a bit of cognitive behaviour therapy and exercise,” she recalls.

It took nearly 30 years of campaigning but in 2018, NICE (the National Institute for Health and Care Excellence) agreed to rewrite the outdated guidelines around ME.

The ME Association

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