Profile avatar
lauravictorine.bsky.social
Former medical doctor | PhD | Living with moderate/severe Myalgic Encephalomyelitis (ME) | Dutch 🇳🇱 | Cat mom of two | #pwME #myalgicencephalomyelitis #myalgicE
32 posts 568 followers 516 following
Regular Contributor
Active Commenter
Posts 23 Comments 24

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

submitted 154 days ago • 5 comments

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

submitted 163 days ago • 14 comments

"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...

submitted 163 days ago • 3 comments

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

submitted 163 days ago • 0 comments

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...

submitted 164 days ago • 4 comments

For Dutch speaking #pwME and #pwLC, I've written a short piece about ME history and our rapid reponse to the BMJ concerning the GET/CBT systematic review on #linkedin. www.linkedin.com/posts/laurad... #myalgicE #longcovid #MEcfs #myalgicencephalomyelitis

submitted 163 days ago • 0 comments

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...

submitted 165 days ago • 7 comments

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

submitted 164 days ago • 1 comment

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

submitted 204 days ago • 0 comments

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/...

submitted 164 days ago • 3 comments

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.

submitted 164 days ago • 0 comments

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

submitted 167 days ago • 8 comments

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

submitted 170 days ago • 0 comments

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".

submitted 170 days ago • 2 comments

Shame on @bmj.com for publishing yet another methodologically flawed piece on behavioural interventions in #IACC (such as #longcovid and #myalgicE). Haven't you learned anything from the #pacetrial? Don't you check the quality of the evidence provided? #pwME #MEcfs #pwLC www.bmj.com/content/387/...

submitted 170 days ago • 5 comments

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...

submitted 186 days ago • 0 comments

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

submitted 176 days ago • 1 comment

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

submitted 177 days ago • 2 comments

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

submitted 177 days ago • 0 comments

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?...

submitted 177 days ago • 1 comment

“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...

submitted 181 days ago • 7 comments

Sex differences in postacute infection syndromes JULIO SILVA HTTPS://ORCID.ORG/0000-0001-8212-7440 AND @virusesimmunity.bsky.social AKIKO IWASAKI www.science.org/doi/10.1126/...

submitted 180 days ago • 0 comments

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.

submitted 182 days ago • 24 comments