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Margaret of Mar, 31st Countess of Mar
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[[File:Margaret of Mar.png|200px|thumb|right|Source:tribeofmar.com]] '''Margaret of Mar, 31st Countess of Mar''', (born 19 September 1940) is a British hereditary peer in the House of Lords. She has lived with [[ME/CFS|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 [[Myalgic encephalomyelitis|ME]] and [[Chronic fatigue syndrome|CFS]] organizations to maximize impact on behalf of all people with ME and CFS in the [[United Kingdom|UK]]. Lady Mar is a patron of the [[ME Association|ME Association,]]<ref>{{Cite web|url=https://www.meassociation.org.uk/about-the-mea/patrons-trustees/ | title = Patrons, Trustees, Advisers|language=en-GB|access-date=2019-08-13}}</ref> [[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 [[visual dysfunction | poor focus]] in the eyes.<ref>[http://www.pan-uk.org/pestnews/Issue/Pn35/pn35p4.htm Pesticide Action UK Network - Persistent sheep dip lady: An interview with the Countess of Mar]</ref> ==Open letters== *Jun, 2015, 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.<ref>{{Cite web|url=https://www.healthrising.org/forums/threads/th-countess-of-mars-letter-to-dr-suzanne-osullivan.2655/ | website = Health Rising|access-date=2019-08-19 | title = The Countess of Mar's letter to Dr Suzanne O'Sullivan | date = |last = | first = | authorlink = |archive-url=|archive-date=|url-status=}}</ref> *Nov 3, 2016, the Countess wrote to the BBC to complain about the coverage of the FITNET ME/CFS paediatric trial run by [[Esther Crawley]].<ref>{{Cite web|url=http://www.margaretwilliams.me/2016/bbc-complaint-mar-nov16.pdf | title=Open Letter to BBC over FITNET coverage - Nov 3, 2016|last = | first = | authorlink = | date = | website = margaretwilliams.me|archive-url=|archive-date=|url-status=|access-date=2019-08-19}}</ref> She said the reporting was "was neither accurate nor impartial" and that information on the BBC website, news bulletins & news channel were misleading. *Nov 21, 2016, The [http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf 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 βcuredβ 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]]."<ref>{{Cite web|url=http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf | title=Response from BBC to Countess of Mar - Nov 21, 2016|last = | first = | authorlink = | date = | website = |archive-url=|archive-date=|url-status=|access-date=2019-08-19}}</ref> *Dec 8, 2016, [https://m.facebook.com/story.php?story_fbid=1871874666431000&id=1482582732026864 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.<ref>{{Cite web|url=https://www.facebook.com/story.php?story_fbid=1871874666431000&id=1482582732026864 | title = Tymes Trust | website = facebook.com|access-date=2019-08-13}}</ref> *Feb 1, 2017, the [http://www.margaretwilliams.me/2017/public-accounts-committee.pdf 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. ==Talks and interviews== *2010, [https://www.youtube.com/watch?v=XLGN0vx3mhE House of Lords debate neurological disorders October 11] *Mar 11, 2019Β - Interviewed on [[The ME Show]] by [[Gary Burgess]] about her advocacy work in Parliament and as chair of [[Forward-ME]] - [https://www.buzzsprout.com/172265/967164-episode-seven-the-countess-of-mar (Episode Link)] *[http://www.forward-me.org.uk/Speeches.htm Speeches by Lady Mar - Forward-ME] ==Online presence== *[http://www.parliament.uk/biographies/lords/countess-of-mar/1861 House of Lords Profile] *[http://www.theyworkforyou.com/search/?pid=12904&pop=1#n4 Countess of Mar - TheyWorkForYou] ==Learn more== *[https://en.wikipedia.org/wiki/Margaret_of_Mar,_31st_Countess_of_Mar Wikipedia - Margaret of Mar, 31st Countess of Mar] *[http://www.theecologist.org/campaigning/cleaner_air_water_land/658600/campaign_hero_countess_of_mar.html "CAMPAIGN HERO: Countess of Mar"] ==See also== *[[All-Party Parliamentary Group on Myalgic Encephalomyelitis]] *[[Forward-ME]] ==References== {{Reflist}} [[Category:People with ME, CFS, and/or FMS]] [[Category:Famous people with ME, CFS, and/or FMS]] [[Category:British famous people with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:British advocates or allies]] [[Category:Politicians]] [[Category:United Kingdom politicians]] [[Category:United Kingdom Members of the House of Lords]]
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