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Sally Burch
@KeelaToo
Blogs at Just ME sallyjustme.blogspot.co.uk for #pwme #MyalgicE #MEcfs. Previously a biology lecturer in FE. Love my family & my dogs!
N.Irelandsallyjustme.blogspot.co.ukJoined May 2013

Sally Burch’s Tweets

8/ The coming battle must be against poverty, not against the poor. You cannot rely on a heartless government having a change of heart, but concerted action by the public can force a change of mind. The time for action is now. Please sign the petition.
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ME/CFS can be compatible with life, but incompatible with living. There’s a saying for the living, if you don’t use it, you lose it. The paradox of #MECFS is that if you use it, you will lose it, either temporarily or permanently. It’s the quicksand of the disease world.
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A masterpiece of a thread from Adam Links, screenshots etc all far more scholarly and informed than Fiona Fox’s poor excuse of a book. 👇
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Fiona Fox director of the Science Media Centre has a new book out called Beyond The Hype - The Inside Story of Media's Biggest Controversies. The chapter on ME/CFS "First they came for the communists" is biased, inaccurate and offensive. #BeyondTheHype 🧵Thread
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The #MECFS + #LongCOVID communities should be grateful for the boundless courage + persistence of . His insights + actions are helping to right wrongheaded efforts to impose poorly supported interventions that appear to also risk the health of many.
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The saga over the proposed Lightning Process study in Norway repeats itself this year. Like Groundhog Day! @Nina_Steinkopf virology.ws/2022/05/31/tri
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Dr. William Weir, Medical Advisor to Hope 4 ME & Fibro Northern Ireland has accepted special invitation from Sajid Javid, U.K. Secretary of State for Health & Social Care, to be a vital member of new ‘Rethinking M.E.’ Westminster Parliamentary Group. #MECFS
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Why does Parliament have a bar? Is there a single, valid reason for providing our lawmakers with subsidised alcohol while they are working? I’m not looking for joke replies, I’m being serious. Why are our lawmakers allowed to get pissed at work at our expense?
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The Lightning Process teaches customers how to wish. Wishing articulates a vision of how we would like life to be, but is powerless to effect change. As such the LP is no more able to cure ME/CFS than, say, tossing a coin into a wishing well or blowing out the candles on a cake.
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The problem with questionnaires. #LongCovid #MECFS #PWME Inappropriate questions & misinterpreted answers. :(
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Another study seems to suggest that people with #LongCovid suffer from PTSD, anxiety, and depression. Let me walk you through why we need to be very careful when interpreting the results of this or similar studies. 1/🧵 mental.jmir.org/2022/2/e33704
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On the top picture, you see me.   Back then I enjoyed life and did not worry about the future. I had just finished school and couldn't wait to see what life had in store for me. I was a very sociable person and loved having people around me. I lived a very active life and there
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Good interview #MECFS patients in NI have no clinic to which they can be referred. An ME clinic has been promised for years but despite post being advertised twice, with good applicants (1 even offered post) HSCB have failed to implement the promised clinic. Patients suffer on :( t.co/TBrZy4PhOu
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NICE's new guideline on ME/CFS was published last month. Frontline providers have a huge role to play in implementing it. Thank you for your Dear Doctor video twitter.com/MEActNetUK/sta Patients matter, their voices matter. #MyalgicEncephalomyelitis
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Dear Doctor, you can help ME. The new #MyalgicEncephalomyelitis guideline by @NICEComms is out. Together, we can reach health professionals across the country & share this guideline with them. Learn how: meaction.net/2021/11/09/tel #pwME #DearDoctor #ImplementThatGuideline.
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