Laura de Vries
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lauravictorine.bsky.social
Laura de Vries
@lauravictorine.bsky.social
580 followers 520 following 32 posts
Former medical doctor | PhD | Living with moderate/severe Myalgic Encephalomyelitis (ME) | Dutch 🇳🇱 | Cat mom of two | #pwME #myalgicencephalomyelitis #myalgicE
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Reposted by Laura de Vries
katha1970.bsky.social
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
Mila Hermisson's message to the world: "Learn About ME"
YouTube video by For chronically ill and their loved ones
youtu.be
December 14, 2024 at 2:39 PM
Reposted by Laura de Vries
bmhughes.bsky.social
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
Long COVID needs real therapeutics: time to move past disproven approaches
www.bmj.com
December 5, 2024 at 10:46 PM
Reposted by Laura de Vries
abrokenbattery.bsky.social
"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...
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
www.thetimes.com
December 6, 2024 at 7:47 AM
Reposted by Laura de Vries
hefziba.bsky.social
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
December 5, 2024 at 5:03 PM
Reposted by Laura de Vries
alexisme.bsky.social
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...
Sign the Petition
ME Association Chair Neil Riley must step down
www.change.org
December 4, 2024 at 7:15 PM
lauravictorine.bsky.social
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
Laura de Vries on LinkedIn: Long COVID needs real therapeutics: time to move past disproven approaches
L'histoire se répète, of dit nooit meer? In 1955 werd Myalgische Encefalomyelitis (ME) voor het eerst als biomedische ziekte met naam beschreven in de…
www.linkedin.com
December 5, 2024 at 10:05 AM
Reposted by Laura de Vries
davetuller1.bsky.social
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...
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 ...
virology.ws
December 3, 2024 at 8:31 PM
lauravictorine.bsky.social
Excellent thread by @humanmanifold.bsky.social summarizing our rapid response to the recent BMJ review on GET/CBT for #longcovid.
humanmanifold.bsky.social Sam @humanmanifold.bsky.social · Dec 4
Rapid response (RR) to the recent BMJ review on #LongCovid treatments by Zeraatkar et al that concluded there's "moderate certainty evidence" for #GET and #CBT:

www.bmj.com/content/387/...
1/
Long COVID needs real therapeutics: time to move past disproven approaches
www.bmj.com
December 4, 2024 at 12:55 PM
Reposted by Laura de Vries
tomkindlon.bsky.social
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.
October 25, 2024 at 12:13 PM
lauravictorine.bsky.social
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/...
Long COVID needs real therapeutics: time to move past disproven approaches
www.bmj.com
December 4, 2024 at 11:58 AM
lauravictorine.bsky.social
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.
ellecarnitine.bsky.social elle carnitine 🪳 @ellecarnitine.bsky.social · Dec 4
Our rapid response to the recent BMJ systematic review, according to which CBT and GET are probably effective for Long COVID, is now online:

www.bmj.com/content/387/...
Long COVID needs real therapeutics: time to move past disproven approaches
www.bmj.com
December 4, 2024 at 11:51 AM
Reposted by Laura de Vries
lifeatthewindow.bsky.social
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
December 1, 2024 at 11:35 AM
lauravictorine.bsky.social
Great piece on what's wrong with the BMJ review on CBT/GET in Long Covid. Thanks @bmhughes.bsky.social for explaining.
bmhughes.bsky.social Brian Hughes @bmhughes.bsky.social · Nov 28
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise

As ever, the devil is in the detail

TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted

(Too bad they hid the crucial deets in an online supplement!)

cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 28, 2024 at 10:26 PM
Reposted by Laura de Vries
abrokenbattery.bsky.social
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".
November 28, 2024 at 6:20 PM
lauravictorine.bsky.social
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/...
Interventions for the management of long covid (post-covid condition): living systematic review
Objective To compare the effectiveness of interventions for the management of long covid (post-covid condition). Design Living systematic review. Data sources Medline, Embase, CINAHL, PsycInfo, Alli...
www.bmj.com
November 28, 2024 at 7:32 PM
Reposted by Laura de Vries
karenlhargrave.bsky.social
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...
From ‘yuppie flu' to ’anti-recovery activists’
Why narratives around ME and Long Covid matter – and how to change them
www.thereforme.uk
November 12, 2024 at 9:11 AM
Reposted by Laura de Vries
itsmepz.bsky.social
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
CFS and the CDC's Failure to Respond: Primetime Live (1996)
YouTube video by Laurel B
youtu.be
November 23, 2024 at 12:40 AM
lauravictorine.bsky.social
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
November 21, 2024 at 7:18 PM
lauravictorine.bsky.social
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
abrokenbattery.bsky.social Adam @abrokenbattery.bsky.social · Nov 21
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 6:50 PM
Reposted by Laura de Vries
cabruce.bsky.social
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?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 6:37 PM
Reposted by Laura de Vries
naomidharvey.bsky.social
“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...
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...
www.healthrising.org
November 17, 2024 at 11:26 AM
Reposted by Laura de Vries
valebodi.bsky.social
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/...
Sex differences in postacute infection syndromes
Understanding postacute infection syndromes requires sex-specific research approaches.
www.science.org
November 18, 2024 at 11:58 PM
Reposted by Laura de Vries
sunsopeningband.bsky.social
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.
November 16, 2024 at 5:28 PM