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My #MECFS scandal explainer video has just passed 200,000 views.
Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.
Adam
6,663 posts
Adam
@ABrokenBattery
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Joined September 2017
- "For years and years I've been passed from doctor to doctor with me saying I'm so fatigued I've got all this pain... and noone could give me any answers." Miranda Hart talking about her diagnosis of ME caused by Lyme Disease on the Graham Norton show. #MECFS
00:00 - Highlights Baroness Brinton speaking at the Long Covid debate in the House of Lords 17 Nov 2022. She describes a study that is only looking at psychological factors as "breathtaking". #longcovid #mecfs
00:00 - BBC Look North. Dr Becky Williams, who has long Covid, and meets the criteria for ME/CFS has joined over 200 other healthcare workers calling on the government to provide better support. #ThereForME campaign
00:00BBC Look North segment on #MECFS and #LongCovid (3 mins) A doctor from Leeds who developed long Covid and the debilitating effects of ME has said NHS patients like her have been “left to rot” and calls for better NHS care youtu.be/vRZTZdnHb-0?si… - Clip from The Golden Girls (1989): Before being diagnosed with #MECFS, Dorothy tells her doctor she’s had months of exhaustion, fevers, muscle weakness, memory problems, and more. Her tests are normal, so he dismisses it as loneliness or depression.
00:00 - "I spoke to the GP about it [Long Covid] & he advised me to do this thing called Graded Exercise... when I looked it up loads of people who had ME/CFS or anything like this was saying this is the worst idea, you must not do this" Skys technology correspondent @rowlsmanthorpe
00:00 - New Video: Post Exertional Malaise is the hallmark symptom of #MECFS and is also common in #LongCovid. Video explains the abnormal response to exertion, triggers, symptoms and management.
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00:00- Full article from today's Times "The NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis (ME) under a government plan to overhaul care for the debilitating illness." archive.li/2023.08.09-064…
- Highlights from today's BBC Breakfast Interview with @BinitaKane and Sarah Boothby (@swastrosarah) about Severe #MECFS and doctors who have had no training not understanding/listening when they see severly ill patients with #MECFS
00:00 - Highlights segment about #MECFS on BBC Breakfast. Dr William Weir and @BinitaKane talk about the history of #MECFS how it has been psychologised and the frustrating lack of progress. There are now millions of patients with Long Covid and we have no treatments.
00:00 - New video: What is ME/CFS? A brief overview of symptoms, diagnosis and treatment based on the 2021 NICE guideline. Its not being tired all the time, patients have an energy impairment that dramatically limits their activity.
00:00 - “It wasn’t science it was misogyny” George Monbiot, talking about #MECFS and the influential 1970 McEvedy/Beard paper on Double Down News in 2021. They didn’t interview any patients and concluded an outbreak of ME was mass hysteria because the majority of patients were women.
00:00 - Clip from BBC Look North - Dr Alexis Gilbert (@alexis___me) who is almost entirely bed bound with #LongCovid and has been diagnosed with #MECFS feels "abandoned by the government... Its taken away all my dignity, all my joy its been devastating".
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