Paul Keeble ME/LC
@PaulRKeeble
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ME since 2016 (Mild), 2019 Moderate , 2020 Severe Long Covid since March 2020 (V Severe) Funcap55 = 1.9 - 2.1 (Severe) Discourteous behaviour = block.
UK
Joined March 2009
Researchers studied 1,157 COVID-19 patients. Ensitrelvir cleared the virus 82% faster than no treatment and only 16% slower than ritonavir-boosted nirmatrelvir, with fewer side effects and no taste disturbance. https://t.co/SXV3VblI2R
thelancet.com
The ongoing pursuit of safe, effective, and accessible antiviral treatments for COVID-19 remains a key public health goal, even as the disease shifts into a milder, endemic stage for many. In this...
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These questions on how NHS Scotland will be spending its ME service money could not be more starkly different, highlands seems to have a decent plan whereas Orkney seems to be intending to use physiotherapy. https://t.co/b06EXJvB8w
https://t.co/7c8D5qtGSs
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Debate in the Welsh Assembly on the 15th October on ME. The call to the Welsh government looks to me to be a call for a plan for ME support and medical services especially for severe ME patients. https://t.co/RebvnChiHd
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"The burden Dr. Achan's team documented, affecting two-thirds of Covid survivors, far exceeds global estimates, suggesting that Long Covid may be particularly severe in malaria-endemic regions." Its very prevalent (>33%) in the west as many studies have shown.
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"We found, on average, about 67% of individuals who had had Covid-19 remained unwell in one way or the other," Dr. Achan said. "In a significant proportion of them, they are still unwell two to three years after the acute illness." #longcovid
https://t.co/q1kp8QHE9k
allafrica.com
While governments lifted restrictions and international attention moved elsewhere after some declared victory over the initial, acute phase of the Covid-19 pandemic, a significant portion of Covid-19...
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Action for ME's every 5 year Big ME survey has been released. For UK residents. https://t.co/tdEZg4v0lp
actionforme.org.uk
Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
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"NICE completed a review in January 2025 of any new evidence to alter its guideline and saw no evidence to make changes. Research evidence firmly backs ME/CFS as a biomedical disease." https://t.co/RA69nm1dDa
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A great documentary aired on Dutch national TV about self-employed Long Covid patients and their struggle to get insured, largely due to a lack of understanding and awareness about what #LongCovid actually entails. Fragment below with English subtitles. https://t.co/Faj5zWqHC5
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This is brilliant. Everyone new to the #MECFS or #LongCovid field should know about this. (PDF) Biopsychosocial Model or Bio-political Ideology? Medically unexplained symptoms, welfare reform and the implications for Long-COVID
researchgate.net
PDF | Discussion paper for Citizen Network Research Access at: https://citizen-network.org/library/biopsychosocial-model.html The biopsychosocial... | Find, read and cite all the research you need on...
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We have been seeing the charts from this study, the ME/CFS vs Long Covid symptoms and impact of various treatments reported by nearly 4000 patients in preprint. It's now published.
Important study on ME/CFS and LC now published https://t.co/L3WdPQA5QY
@organichemusic including noting negative effects of CBT and GET
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You’d think the biggest barrier with chronic illness would be the diseases themselves. Nope! Turns out it’s the medical system and the people inside it. Don’t belive me? Here are actual quotes from self identified medical professionals on Reddit, talking about people like me,
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The graphic you never see in the welfare debate. Funny how the clearly most privileged panel members say we can’t afford it. #bbcqt
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My home server is gradually failing, hard drives, cooling fan and most of the USB ports nonfunctional. Badly needs a replacement of its core parts. It's decaying much like I am, only I can't buy my ME riddled body new parts to make it go again.
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No one in a position of power to do something about the harm COVID is doing will have any way to deny they didn't know. Every last one of you has thousands of messages referencing peer reviewed science. When the public works this out the Hague will be where you are all going
Anon post: About 75% of my week has been spent on safeguarding, complaints, and behaviour issues. We’re getting more than 30 concerns daily, and I’ve made two referrals this week. Is this level of intensity common elsewhere, or has something shifted recently?
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🤭 creds @kirstymecfslife
While this tweet so obviously wasn’t directed at strangers on the internet, this healthy person accidentally proved exactly what many healthy people are like: judgmental, ignorant, cold, rude, and cruel. And, they’re never above kicking someone who’s down!
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Today is PANS/PANDAS Awareness Day. For children and families who experience this, this isn’t just a diagnosis. It’s the moment that life changed in an instant. 💛 1/ #PansPandasAwarenessDay #PANS #PANDAS #PANSPANDAS #Neuroinflammation
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https://t.co/9HJFrjim69 An up to date list of #MECFS Diagnostic Biomarkers that are in development #pwME #MillionsMissing #LongCovid #Biomarkers
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They need to compare to depression, anxiety, MS, Fibromylgia, gulf war syndrome, Long Covid, Chronic Lyme and potentially other diseases. They need a lot more people to avoid over selection by their AI approach and properly activity matched controls. Long way to go.
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No one likes these machine learning results very much because we don't really understand the results. You can't look at the markers and clearly see the disease because its being grouped in 200 dimensions.
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