iiinova — where your digital self keeps evolving

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/12/2024

Mila Hermisson turned 22 last month. She has been lying in the exact same position in a dark room with extremely severe ME for over 4 years. Over 1400 days! In darkness. In silence. In loneliness. With no prospect of medical help. Please watch Mila's short message to the world: youtu.be/hc9m6BJdvJY

youtu.be

Mila Hermisson's message to the world: "Learn About ME"

YouTube video by For chronically ill and their loved ones

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Reposted by Laura de Vries

Brian Hughes @bmhughes.bsky.social · 05/12/2024

Here is our Rapid Response to that hugely problematic BMJ review of treatments for #LongCovid Delighted to have contributed with @ellecarnitine.bsky.social, @fvrhijn.bsky.social, @lauravictorine.bsky.social, and Xandra Westerhuis We need to learn from the history of #MECFS

bmj.com

Long COVID needs real therapeutics: time to move past disproven approaches

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Adam @abrokenbattery.bsky.social · 06/12/2024

"NHS to review ME services after death of Maeve Boothby O’Neill: Health minister and Nice commit to work to improve patient outcomes after landmark inquest" (The Times): www.thetimes.com/uk/healthcar...

thetimes.com

NHS to review ME services after death of Maeve Boothby O’Neill

Health minister and Nice commit to work to improve patient outcomes after landmark inquest

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Hefzi @hefziba.bsky.social · 05/12/2024

Wetenschappers en artsen die bedgebonden zijn die moeten vechten tegen wetenschappers die betaald worden en een conflict of interest hebben. Dat is de wereld van #ME en #longcovid

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Alexis Gilbert @alexisme.bsky.social · 04/12/2024

In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action. www.change.org/p/me-associa...

change.org

Sign the Petition

ME Association Chair Neil Riley must step down

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David Tuller @davetuller1.bsky.social · 03/12/2024

The BMJ @bmj.com has published a review of Long Covid interventions that of course recommends CBT and a mental/physical health rehab program. But the studies underlying the recommendations are at "high risk of bias." This is really propaganda. virology.ws/2024/12/03/t...

virology.ws

Trial By Error: Yet Again BMJ Recommends CBT and Exercise for Long Covid | Virology Blog

By David Tuller, DrPH What is going on at The BMJ? In May, the journal corrected an obvious error in a paper about a prominent Long Covid mental and physica ...

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Laura de Vries @lauravictorine.bsky.social · 04/12/2024

Excellent thread by @humanmanifold.bsky.social summarizing our rapid response to the recent BMJ review on GET/CBT for #longcovid.

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Tom Kindlon @tomkindlon.bsky.social · 25/10/2024

Full text just released for this US paper: Overlapping conditions in Long COVID at a multisite academic center www.frontiersin.org/journals/neu... "58% of LC patients screened positive for ME/CFS vs. 0% of controls (p < 0.001)" #LongCovid #MEcfs #CFS #PwME

Background: Many patients experience persistent symptoms after COVID-19, a syndrome referred to as Long COVID (LC). The goal of this study was to identify novel new or worsening comorbidities self-reported in patients with LC.

Methods: Patients diagnosed with LC (n = 732) at the Mayo Long COVID Care Clinic in Rochester, Minnesota and Jacksonville, Florida were sent questionnaires to assess the development of new or worsening comorbidities following COVID-19 compared to patients with SARS-CoV-2 that did not develop LC (controls). Both groups were also asked questions screening for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), generalized joint hypermobility (GJH) and orthostatic intolerance. 247 people with LC (33.7%) and 40 controls (50%) responded to the surveys.

Results: In this study LC patients averaged 53 years of age and were predominantly White (95%) women (75%). The greatest prevalence of new or worsening comorbidities following SARS-CoV-2 infection in patients with LC vs. controls reported in this study were pain (94.4% vs. 0%, p < 0.001), neurological (92.4% vs. 15.4%, p < 0.001), sleep (82.8% vs. 5.3%, p < 0.001), skin (69.8% vs. 0%, p < 0.001), and genitourinary (60.6% vs. 25.0%, p = 0.029) issues. 58% of LC patients screened positive for ME/CFS vs. 0% of controls (p < 0.001), 27% positive for GJH compared to 10% of controls (p = 0.026), and a positive average score of 4.0 on orthostatic intolerance vs. 0 (p < 0.001). The majority of LC patients with ME/CFS were women (77%).

Conclusion: We found that comorbidities across 12 surveyed categories were increased in patients following SARS-CoV-2 infection. Our data also support the overlap of LC with ME/CFS, GJH, and orthostatic intolerance. We discuss the pathophysiologic, research, and clinical implications of identifying these conditions with LC.

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Laura de Vries @lauravictorine.bsky.social · 04/12/2024

Check out our rapid response on @bmj.com about the need for real therapeutics for #longcovid and #myalgicE #MEcfs and not GET/CBT. Written by: @ellecarnitine.bsky.social @fvrhijn.bsky.social @bmhughes.bsky.social Xandra Westerman and myself. www.bmj.com/content/387/...

bmj.com

Long COVID needs real therapeutics: time to move past disproven approaches

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Laura de Vries @lauravictorine.bsky.social · 04/12/2024

Proud of our 'horizontal writing collective' for writing this rapid response on @bmj.com. Take home: don't treat #LongCovid pts with #PEM with GET/CBT. There's no evidence. Time for real therapeutics. Thanks @ellecarnitine.bsky.social @fvrhijn.bsky.social @bmhughes.bsky.social Xandra Westerman.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 01/12/2024

For too many of us the M.E. diagnosis comes when we’ve seriously deteriorated. Maybe years after onset and repeated unrecognised PEM. Despite seeing GPs and specialists, we’re told nothing is wrong and spend years having our bodies damaged, for some permanently. This has to stop. #pwME #MECFS

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Laura de Vries @lauravictorine.bsky.social · 28/11/2024

Great piece on what's wrong with the BMJ review on CBT/GET in Long Covid. Thanks @bmhughes.bsky.social for explaining.

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Adam @abrokenbattery.bsky.social · 28/11/2024

BBC Radio 4 - Dr Natalie McDermott responds to BMJ CBT & Rehabilitation review for #LongCovid. "It's like saying to someone suffering a heart attack; we have no treatments but we'll help deal with your symptoms by talking about it".

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Karen Hargrave @karenlhargrave.bsky.social · 12/11/2024

I found some time recently to sit down and write for our #ThereForMe blog. In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better. www.thereforme.uk/p/from-yuppi...

thereforme.uk

From ‘yuppie flu' to ’anti-recovery activists’

Why narratives around ME and Long Covid matter – and how to change them

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PZ @itsmepz.bsky.social · 23/11/2024

If the CDC did their job in the 80s and actually investigated the outbreaks of "CFS", maybe there would have been warnings of the potential consequences of post acute sequelae. And maybe we'd have treatments too... #GreatestMEdicalScandal #pwME youtu.be/AW0x9_Q8qbo?... #MEcfs #MyalgicE

youtu.be

CFS and the CDC's Failure to Respond: Primetime Live (1996)

YouTube video by Laurel B

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Laura de Vries @lauravictorine.bsky.social · 21/11/2024

Second time I've heard/read about someone with (severe) #myalgicencephalomyelitis who used a JAK-inhibitor and recovered (first was via prof Ron Davis). Really curious to hear more about it! Any #pwME who have experience with this? #mecfs #myalgicE

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Laura de Vries @lauravictorine.bsky.social · 21/11/2024

If you're doing only one thing today, then please let it be watching this video by brilliant @abrokenbattery.bsky.social about the horrible history of treatment of ME. #pwME #myalgicE #MEcfs #myalgicencephalomyelitis

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Carole Bruce @cabruce.bsky.social · 21/11/2024

This is what has happened to us. This is what has been done to us. You probably know someone here. Someone with #MECFS. If we’re angry. If we’re sad. It’s because this has happened to us. Please watch this video. Please tell everyone. This is what happened💔 youtu.be/RiwX9Y0NbiQ?...

youtu.be

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

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Naomi Harvey PhD @naomidharvey.bsky.social · 17/11/2024

“Using the term “long COVID” whilst failing to identify subdiagnoses and specifying which groups are being discussed, is confusing & actively harmful both in scientific research and in a wider context.” www.healthrising.org/blog/2023/05...

healthrising.org

The Problematic Language of Long COVID and ME and Why it Matters - Health Rising

Earlier Alice penned a thought-provoking blog “No, long COVID is not helping ME/CFS”. Now she and Dr. Naomi Harvey propose that a shift in the language we use to describe both long COVID and ME/CFS wo...

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Todd Davenport @sunsopeningband.bsky.social · 16/11/2024

The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.

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