Margaret of Mar, 31st Countess of Mar
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 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[edit | edit source]
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.
Open letters[edit | edit source]
- 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.
- 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. 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 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."
- 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.
- Feb 1, 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.
Talks and interviews[edit | edit source]
- 2010, House of Lords debate neurological disorders October 11
- Mar 11, 2019 - Interviewed on The ME Show by Gary Burgess about her advocacy work in Parliament and as chair of Forward-ME - (Episode Link)
- Speeches by Lady Mar - Forward-ME
Online presence[edit | edit source]
Learn more[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
- "Patrons, Trustees, Advisers". Retrieved Aug 13, 2019.
- Pesticide Action UK Network - Persistent sheep dip lady: An interview with the Countess of Mar
- "The Countess of Mar's letter to Dr Suzanne O'Sullivan". Health Rising. Retrieved Aug 19, 2019.
- "Open Letter to BBC over FITNET coverage - Nov 3, 2016" (PDF). www.margaretwilliams.me. Retrieved Aug 19, 2019.
- "Response from BBC to Countess of Mar - Nov 21, 2016" (PDF). Retrieved Aug 19, 2019.
- "Tymes Trust". www.facebook.com. Retrieved Aug 13, 2019.
Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
Conversion disorder - A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "neurasthenia" and "hysteria". A more modern term is "Somatic Symptom Disorder".
Accuracy - The "closeness of an observation to the true clinical state". With respect to diagnostic tests, "accuracy" means how specific and sensitive the test is.
Graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.