Margaret of Mar, 31st Countess of Mar

Margaret of Mar, 31st Countess of Mar, (born 19 September 1940) is a British elected hereditary peer in the House of Lords. She has lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since coming into contact with sheep dip in 1989 on her farm. Lady Mar founded Forward-ME to promote effective joint working by ME and CFS organizations to maximize impact on behalf of all people with ME and CFS in the UK.

Lady Mar is a patron of the ME Association, Tymes Trust and ME Research UK, and is co-chair of the All-Party Parliamentary Group on Myalgic Encephalomyelitis.

Illness
Lady Mar came into regular contact with OP sheep dip when dipping her sheep on her farm in the 1980s. She reports having had 'dipping flu' after each occasion of working with sheep dip - runny nose, tight chest and cough - although she did not take much notice of it at the time. It was on one of those occasions, in 1989, when she accidentally spilt some dip into her wellington boot. After several hours, she began to feel the ill effects of skin contact with the dip. Within three weeks, she had developed the first signs of ME/CFS.

The next year she spent housebound and largely bedbound, with symptoms including concentration problems, myalgia, weight loss, and poor focus in the eyes.

Open letters
On 1 Feb 2017, the Committee of Public Accounts answered a letter the Countess wrote regarding her concerns about public funding for the PACE trial. The Committee stated that it "is not well placed to comment" on specific clinical trials, that the National Institute for Health and Care Excellence (NICE) "recommends that CBT and GET should only be offered to those who agree with this approach" and since NICE is conducting their own review of the PACE trial, the Committee of Public Accounts is awaiting their review.

On Dec 8, 2016, the Countess wrote again to the BBC about the FITNET coverage where she states "I regret that I find your response far from satisfactory." She references David Tuller's Trial By Error articles on FITNET, FITNET and the NHS, and flawed Dutch studies of GET/CBT and Esther Crawley.

On Nov 21, 2016, The BBC replied to the Countess's letter stating that "We are aware that research about CFS has been controversial and we try to ensure that this is reflected in our coverage....I accept that the original headline for the article by James Gallagher which referred to people being ‘cured’ was incorrect. In fact it was published in error and was corrected very shortly after the original version was first posted....we decided to make reference to [the controversy] by including a clip of Jane Colby from the Tymes Trust."

On November 3, 2016, the Countess wrote to the BBC to complain about the coverage of the FITNET ME/CFS paediatric trial run by Esther Crawley. . She said the reporting was "was neither accurate nor impartial" and that information on the BBC website, news bulletins & news channel were misleading.

The Countess of Mar contacted Dr Suzanne O'Sullivan about her book "It's all in your head - True Stories of Imaginary illness" in June 2015. She expressed dissatisfaction of the description of ME/CFS as a psychosomatic or conversion disorder in  the book and promotional media interviews about it.

Talks and interviews

 * 2010, House of Lords debate neurological disorders October 11
 * Speeches by Lady Mar - Forward-ME

Online presence

 * House of Lords Profile
 * Countess of Mar - TheyWorkForYou

Learn more

 * Wikipedia - Margaret of Mar, 31st Countess of Mar
 * "CAMPAIGN HERO: Countess of Mar"