Finally! New guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION.
Hope this will protect more patients from becoming bedbound by wrongly applied #rehab measures like GET
Please RT
For more info see 🧵⬇️
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!
Sally Burch’s Tweets
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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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#severeMEDay
50 years ago, my mother became ill with severe #mecfs. She was sent from one physician to the next and so heavily gaslighted that she stopped seeing medical doctors altogether. As a child, I only knew her bedridden in a dark room.
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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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There's a popular myth in medicine that chronic illness is an identity, an idea people attach themselves to, and how it reflects some personality flaw or narcissism.
This is a way to blame chronic illness on people's behavior, so detached from normal life.
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I wish I hadn’t had to learn this by experience. We need to improve medical education; to teach about these dreadful disabling illnesses, and stop the stigma that these are psychological conditions. #MECFS #LongCovid
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I saw my last patient a year ago today. I miss medicine greatly. Yet #LongCovid has taken me on the biggest learning curve of my career. Amidst all the suffering, I have discovered so much about chronic illness that I was never taught. 1/2
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I had a therapist who once told me, “if you don’t schedule a break, your body will take one for you. And it probably won’t be at a convenient time.”
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East Kent NHS Trust responds immediately to ME Association concerns about outdated advice that kids with ME should be prescribed Graded Exercise Therapy.
virology.ws/2022/07/03/tri
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Amazing news: Jen has been found! Thanks to volunteers, everyone sharing, and a caring officer who saw the posts and contacted our tip line, we’ve found her! She’s safe and I’m flying to Miami now. I am overcome with profound gratitude. Thank you, thank you 🙏🏽 twitter.com/owasow/status/
This Tweet is unavailable.
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If you believe you have seen Jennifer Brea since Wednesday June 15th
- Last seen: Near Gate D37 at Miami Int’l Airport
- Age: 39
- Height: 5'6"
- Weight: 135 lbs
- Race: Mixed
- Sex: Female
- Eyes: Brown
Please email findjen@meaction.net
or call (805) 876-4509.
read image description
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Medical haste, COVID-19, and the mythology of “Medically Unexplained Symptoms”
#MUS #Covid19 #LongCovid #mecfs #pwME #medicalnegligence
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Our new study shows that data availability statements are not very useful; 1670 (93%) authors who indicated that data are available on request either did not respond or declined to share their data with us. Journal of Clinical Epidemiology: doi.org/10.1016/j.jcli
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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
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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
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Has the vaccination programme been mothballed? Surely cases of #LongCovid (and consequently #MECFS) will rise as vaccine protection wanes. 🧐🤷
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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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New review shows that patients treated with CBT/GET are *less* likely to be able to work after this treatment than before.
It also highlights that both treatments are unsafe for patients with ME/CFS. #LongCovid #pwME
h/t
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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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ME and my girl: myalgic encephalomyelitis took the life of my daughter Maeve. 's radical new approach is a huge step forward but the bitterest of bittersweet moments
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#MEAwarenessDay Ten years on. Post-viral ME exacerbated by surgery. Rollercoaster health but doing quite well now. Much DOWNTIME required to function in the real world.
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“COVID is over” and yet, right now Covid is also everywhere.
It’s cognitive dissonance in every direction and it’s truly wild.
A 🧵 1/
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Some days it really hits me that I have lost my whole adult life to illness & disability because I randomly caught a virus in 1996.
All my friends had lives, families, bought homes, had careers etc. I had none of it.
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Epstein barr is a virus 90% of humans have been infected with. Many never exhibit acute symptoms or "mono". After many years it was proven to cause MS, the leading cause of neurological disability among young adults. We thought EBV was mild. After all most were asymptomatic,/
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It doesn't sound as catchy but may be truer: What doesn't kill you might give you a chronic illness and ruin your life.
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I'm always humbled by the generous response to Berkeley's crowdfunding for Trial By Error, even during difficult times. Now those who promoted the failed GET/CBT regimen for ME/CFS want to impose it on long Covid patients. You can support my work here:
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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 world is united against the order of Russian President, #VladimirPutin, for his armed forces to attack #Ukraine. There are protests ongoing in cities worldwide. My commentary on Facebook: bit.ly/3MiYJAH LinkedIn: bit.ly/35tJzrc
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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/
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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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ME/CFS discussion on BBC Radio Ulster - Talkback programme covering the lack of services, the new NICE guideline and overlaps with Long Covid. Input from @JoanMcParland (), Charles Shepherd () and a number of patients.
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M.E. (Myalgic Encephalomyelitis) Educational Webinar Series 2021 recordings are now available on the Clinical Education Centre website cec.hscni.net
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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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