From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
The Countess (her title dates back to c1014 and is the oldest peerage title still extant in the United Kingdom and is held by her in her own right) was, until her retirement, the only hereditary peeress in the House of Lords. She was elected to serve as one of the ninety-two hereditary peers retained in the Lords and sat as a cross-bencher. Her departure is marked by an article in ‘The Daily Telegraph’ of 2nd May (paywall) in which, with typical good humoured directness, she says “I don’t want to be there past my best before date.”
On of the privileges of membership of the House is access to Ministers, politicians, and decision-makers which she utilised to the utmost and to the benefit of those affected by ME.
Her zeal for a revolution in the perception and treatment of ME/CFS stemmed from her own experience of organophosphate poisoning which led to autonomic dysfunction. Concern turned to action and she was a member of several European Community Select Committees – on the environment, agriculture and consumer protection, and secretary of the All-Party Parliamentary Group on Pesticides and Organophosphates and a leading light and vice-chair of the All-Party Parliamentary Group on ME.
In 2008 and under her chairmanship, she created the Forward-ME Group, which consists of a broad spectrum of charities and voluntary organisations. The Group’s aim is to promote effective joint working by organisations to maximise impact on behalf of all people with ME and CFS in the UK. From the first meeting, ME Research UK has been a member with our (now) Vice Chair Sue Waddle, a regular attendee.
There have been 50 Minuted Meetings of the Group since the inaugural one on 8 October 2008. The ethos follows that set out in the Opening Statement:
I do hope that all of us here today will develop a strategy for bringing together all those who suffer from ME or are supporters and that we can then move on to transform the ME scene.
It is undoubtedly true that the Group would not have benefited from the opportunity to quiz politicians and the likes of NICE Directors, Officers of various medical Royal Colleges, the CMO of Capita or the Chairman of Optimum Health Care without the leverage that an invitation from a peeress possesses. The speakers, it is fair to say, left meetings under no doubt what challenges were faced by those with ME/CFS due to the decisions/processes that the speakers’ organisations had made.
In the House, Hansard records 36 instances of the Countess speaking to the Chamber specifically about ME/CFS (since such records were indexed from 2006). This does not include contributions to debates regarding neurological conditions or concerning those affected my long-term chronic illnesses in general. The contributions run the full gamut of issues which affect the ME community – social security, personal independence payments, work capability assessments, children and young persons, as well research. Her comments on the PACE trial (6 February 2013), CBT (18 March 2013), and neurological conditions (11 October 2010) are especially noteworthy and informed, and reward a re-visit.
The opportunities offered at Forward-ME for collaboration is illustrated by the commissioning of a survey into the experiences of those with ME/CFS who were offered CBT and GET. The study (funded jointly by ME Research UK and the ME Association) was delivered to NICE as part of a submission to provide hard evidence of the results of both ‘treatments’ and its findings received much publicity and are oft quoted.
In their Lordships’ debate on ME on 2 June 2008 – over a decade before the historic Jan 2019 House of Commons one – the Countess elicited confirmation from the Government (the Parliamentary Under-Secretary of State, Department of Health, Lord Darzil of Denham) “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition of an unknown cause.” An acceptance which has been used to remind the Department of Work and Pension of the nature of the illness ever since.
Her activities have not been confined to the red benches either. The Countess has been a vociferous letter-writer in defence of those affected by the illness and in challenging misconceptions about the illness e.g. Dr S O’ Sullivan’s book ‘It’s All in Your Head: True Stories of Imaginary Illness’.
Her role has also led to invitations to speak at various events – the launch of the CMRC for example and, in March 2015, to the Royal Society of Medicine to contribute to a lecture on ‘ME/CFS: Frontiers‘. The aim was to give delegates, all members of the Royal Society of Medicine, “a rare opportunity to learn about ME/CFS from a clinical, scientific and political perspective.” Her speech included a quote from Frantz Fanon and was addressed to the medics present
Ladies and gentlemen, I know how very difficult it is to say ‘Sorry, I got it wrong’, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard.
Through her work, Margaret has spoken truth unto power and pointed out the injustices that surround ME/CFS and the treatment of those with the condition. Although she will be retiring from the House of Lords, we know that she will not be withdrawing from the fight and we are truly grateful for all that she has done (thus far!) Excepts from Her letter to the members of the Forward-ME Group is reproduced below.
Trustee, Prof Faisel Khan, with ME Research UK Vice-Chair Sue Waddle, Patron The Countess of Mar, and Trustee Jan McKendrick at the launch of the CMRC. Part of email from the Countess of Mar to Forward-ME Group members –
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.…….. Looking back, I believe that between us we have managed to change the perception of ME 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 ME.
Telegraph: I want to go out on a high’: Meet Parliament’s last Countess, 4 May 2020
…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.
ME Association: Stalwart champion of the ME community retires after distinguished parliamentary career 1 May 2020
Action for ME: Countess of Mar retires: share your message of thanks, 4 may 2020
In early March 2020 I spent two weeks with a virus, which may or may not have been C-19. The route of infection was probably via my brother, who appears to have been infected by a friend returning from a skiing trip to Northern Italy at the end of February. I had all the symptoms but couldn’t be tested, as no-one in the chain of contacts had been formally diagnosed with C-19.
Having Mike with me does ease any feelings of isolation and loneliness but, of course, as many ME sufferers know, feelings of missing out and poignant memories do hit us from time to time, especially as we have always found it so difficult to get others to understand ME and how it affects us. At least Covid-19 sufferers are believed.
Of course, the weather being so lovely over recent weeks has been a bonus as we like to sit on the patio by the back door and listen to the birds, and watch the flowers and trees. We don’t have a lot of contact on a daily basis with others so haven’t found it too onerous to be alone. We have, however, ‘adopted’ two birds – a blackbird and a robin – or rather they have adopted us! They have us well-trained in putting food out for them whenever they want! It’s lovely when the robin sings quite near to us and I find it amazing how loud a song emits from such a little bird!
Edwyn’s ME Lockdown view 
Gene expression analysis of 30 genes was conducted on brain tissue samples from wild-type and Toll-like receptor 2 (TLR2) knock-out C57Bl/6 mice injected via the intraperitoneal route for 5 days with either EBV-dUTPase protein or vehicle control. The effect of EBV dUTPase on the expression of genes with key functions in brain plasticity, pain, and fatigue as well as the involvement of TLR2 in EBV-dUTPase induced effects on gene expression was examined by qRT-PCR.
This open-label phase II trial included 40 patients with ME/CFS diagnosed by Canadian criteria. Treatment consisted of six intravenous infusions of cyclophosphamide, 600–700 mg/m2, given at four-week intervals with follow-up for 18 months, extended to 4 years. Response was defined by self-reported improvements in symptoms by Fatigue score, supported by 
