#LongCovid since Summer 2022. Doctor of Humanities. Curious. Arty. A #Renegade50 with @RemissionBiome! #TreatLongCovid #ME

Europe/UK
Joined June 2023
Thinking about that time when I almost died during surgery due to reaction to anaesthesia, and in the next surgery the anaesthetist wrote me a letter to document the situation due to my “anxieties around anaesthesia” Sir, I almost died?! Psychologisation is dangerous
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I am so overwhelmed that I got so lucky that I get to LIVE again. I get to teach. Bump into colleagues in the corridor and chitchat. Do research. Go out for dinner with my love. Go to the park. Buy new clothes. 😭 @subversivepsych were you overwhelmed too? #LC #ME
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Cristina kicking Long Covid 🍉 retweeted
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research. We are working with her to amplify her message, and you can help (if capacity allows). Write to your MP to back her call - and to make things easier, we have a template for you.👇
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Cristina kicking Long Covid 🍉 retweeted
I used this treatment last year and my tinnitus is basically gone.
A groundbreaking treatment pairing auditory tones with mild electrical shocks rewires the brain to quiet chronic tinnitus. Chronic tinnitus, the agonizing perception of ringing in the ears without an external sound source, affects millions worldwide and has long eluded effective medical intervention. However, innovative research in neuroscience shows that bimodal neuromodulation—a technique combining audio tones with gentle electrical stimulation delivered directly to the tongue—can effectively quiet these phantom sounds. By stimulating touch receptors on the tongue while simultaneously playing targeted acoustic signals through headphones, the treatment leverages the brain's natural neuroplasticity. This dual-sensory approach encourages the central nervous system to reframe its sensory processing, essentially retraining the brain to ignore hyperactive auditory signals. In a landmark clinical study involving over 300 adults suffering from chronic subjective tinnitus, more than 86% of compliant participants experienced a significant reduction in symptom severity following 12 weeks of daily treatment. Remarkably, these therapeutic benefits persisted for up to 12 months post-treatment, representing a major leap forward in long-term tinnitus care. Described by patients as feeling like a mild fizzing sensation on the tongue, this non-invasive therapy offers a promising and safe alternative to traditional management strategies, bringing renewed hope to millions seeking lasting relief. source: Conlon, B., Langguth, B., Hamilton, C., Hughes, S., Meade, E., Connor, C. O., Schecklmann, M., Hall, D. A., Toal, P. D., & Lim, H. H.. Bimodal neuromodulation combining sound and tongue stimulation reduces tinnitus symptoms in a large randomized clinical study. Science Translational Medicine, 12(564).
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Cristina kicking Long Covid 🍉 retweeted
#MedX #NursingX #Medstudents We really need to rethink how we were taught about #ME. This is not a psychological illness. In the UK, NICE guidelines have changed to reflect this but many Drs aren’t aware…. #medtwitter #medstudentX
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Cristina kicking Long Covid 🍉 retweeted
I wanted to film the sunset for any ME/CFS people, long covid people, fibro people, or anyone with an illness that keeps them inside or in bed. It’s there waiting for you, I hope, I pray you feel better soon.
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Cristina kicking Long Covid 🍉 retweeted
Replying to @amaticahealth
@amaticahealth is hiring data scientists, computational biologists and machine learning researchers at senior and team member levels. We’re working to uncover biological subgroups, biomarkers and potential treatment targets in complex neuroimmune diseases, including Long COVID and ME/CFS, using multi-omics data and advanced computational methods. We’re looking for people with a strong understanding of molecular biology, experience analysing multi-omics data and a passion for state-of-the-art machine learning. As both the research lead and a patient myself, I’m extremely invested in seeing this research progress. So I’m very excited to work directly alongside our new hires on a mission that aims to rapidly improve patients’ lives, including those of people on our own team. Please apply below or message me directly! amaticahealth.com/careers/se…
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Cristina kicking Long Covid 🍉 retweeted
The Guardian is calling for 18-29 yr olds who’ve never had a relationship. Reasons they suggest ofc don’t mention being housebound/bedbound by chronic illness. Would be great if young pw #MECFS respond. They normally publish 1-2paras from each person. theguardian.com/lifeandstyle…
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You know you have a chronic illness when you see a post about HR (Human Resources ) and you read HR (heart rate) and get confused cause nothing makes sense!
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Cristina kicking Long Covid 🍉 retweeted
A brief history of how ME/CFS ended up stigmatised and underfunded for decades. It wasn't an accident. In 1970, two psychiatrists reviewed the case notes from the 1955 Royal Free Hospital outbreak in London and concluded it was mass hysteria. They didn't interview a single patient, but the idea that ME was psychological became the default view in medicine from then on. In the UK, psychiatrists Simon Wessely, Michael Sharpe and Peter White developed this into the "illness beliefs" model, where a virus might trigger the illness but deconditioning and unhelpful beliefs keep people sick. They had huge influence over funding and policy, sitting on MRC panels and advising NICE and the DWP, and Sharpe and White also advised disability insurers. Much of the UK's ME research funding went into their trials, and their diagnostic criteria only required six months of fatigue, so the trials were full of people who didn't have ME. The largest was PACE, which cost £5M and was published in 2011 as proof that CBT and graded exercise worked. It became the basis for NHS treatment. PACE had disingenuously loosened its recovery criteria partway through the trial, but still claimed success. A patient, Alem Matthees, took them to tribunal and got the data released in 2016. Under the original criteria, recovery fell from 22% to around 7%, and there was little change on objective measures like walking distance or return to work. CBT and graded exercise didn't work. NICE didn't remove graded exercise until 2021. In the US, the CDC dismissed the 1984 Lake Tahoe outbreak, named the illness "chronic fatigue syndrome" in 1988, and the media called it "yuppie flu." In the late 90s, auditors found that of around $23M Congress gave the CDC for CFS research, about $13M had been quietly diverted to other programs and misreported. The NIH then spent roughly $ 5-6M a year on ME/CFS for decades, some of which also went to CBT, exercise and psychological research, and a chunk to university overheads, making it one of the lowest-funded diseases relative to how many people it affects. The CDC recommended CBT and graded exercise until 2017. Most of Europe either followed the UK model or ignored the disease entirely. Germany did both, treating it as psychosomatic while barely funding research. Long COVID has started to change this, because millions of previously healthy people developed the same illness at the same time and it became much harder to dismiss. Germany has now committed €500M over ten years, and biomedical research is consistently finding immune, neurological and autoantibody changes in ME/CFS patients. All psychological intervention studies failed and when we finally started looking at physiological mechanisms, we have found hundreds of alterations. The psychiatrists responsible for the history of ME have millions of deaths on their hands and are largely to blame for the modern stigmatisation of patients. Thankfully that won’t continue much longer, I expect we will finally have breakthroughs in the next years now the shift is made.
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Cristina kicking Long Covid 🍉 retweeted
POV: you’re a doctor & your patient researched their disease to find treatments. Do you think: (a) They’re ill and trying their best (b) They got it all from TikTok to become a liberal identity politics disease faking influencer How so many pick B is beyond me.
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Cristina kicking Long Covid 🍉 retweeted
Petition to make the ME/CFS learning modules mandatory for NHS staff ⬇️ c.org/8YvS2vFWMt
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Afternoon everyone! What about PEM avoidance techniques? I am planning electrolytes for before and after teaching sessions, and got dextromethorphan, not sure how much/when to use it? Anything else you recommend?
Morning folks! Starting regular teaching this week after a 4 year #LongCovid hiatus 😱 What do you recommend as a good anti-Covid protocol? Masks, CPC mouth wash after, what else should I be doing to reduce chances of getting Covid? Thanks! 🙏
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Morning folks! Starting regular teaching this week after a 4 year #LongCovid hiatus 😱 What do you recommend as a good anti-Covid protocol? Masks, CPC mouth wash after, what else should I be doing to reduce chances of getting Covid? Thanks! 🙏
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This is a rather terrible map
Brazilian-speaking countries around the world
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So grateful for my #LongCovid and #ME community, I couldn’t do this without you all, and I dream of the day we recover our health and get to meet each other in person!
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Muscular biopsy done - 3 doctors (one likely intern), and one nurse. I was impressed by how taken seriously I was, which was evident in the way questions were taken before hand. A breath of fresh air! #LC #ME #PwLC #PwME
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Cristina kicking Long Covid 🍉 retweeted
Other doctor directories: lcmedata.org/ukdocs (UK) helpforlongcovid.com (USA) mecfsmed.de/Verzeichnis (Germany) Interested in setting one of these up for your country? This is very easy to do - get in touch and I will help you!
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Cristina kicking Long Covid 🍉 retweeted
A new portal just launched for Portuguese ME patients! It's called pontoEM and serves as an explainer page about the disease, statistics and calls to action, and finally a doctor directory where patients can find ME-friendly clinicians. Every country needs one of these! Big ups to Sofia (@1ofmilli0ns) for setting this up! pontoem.org
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