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
Laten we hopen dat die mutatie op zich laat wachten. Maar het geeft wel aan hoe kwetsbaar we eigenlijk zijn en hoe snel zoiets weer kan gebeuren.
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
Volgens mij heb ik de laatste weken al een paar case reports voorbij zien komen van menselijke besmetting met avian H5N1. Het zijn tot nu toe allemaal geïsoleerde cases, maar het is natuurlijk wachten op..
"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...
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
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...
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
Thanks so much! That means something coming from you. And credits to @ellecarnitine.bsky.social who led the writing effort!
That's excellent! Thanks so much.
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...
It is! And it's inexplicable that @bmj.com chose to publish it anyway. But if we learned anything from the #PACEtrial is that high IF journals are as unreliable as the low IF ones. To this end, we wrote a 'rapid response' with some critical points: www.bmj.com/content/387/...
Completely agree. Also credits to @guusontheinternet.bsky.social who wrote this.
🤣
Excellent thread by @humanmanifold.bsky.social summarizing our rapid response to the recent BMJ review on GET/CBT for #longcovid.
Other authors are @fvrhijn.bsky.social and myself. Xandra Westerman is not on Bluesky. Also, thanks for this excellent thread.
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.
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
Credits to @ellecarnitine.bsky.social for doing most of the work on this one!
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/...
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.
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
And also a really good thread by @mecfsskeptic.bsky.social: bsky.app/profile/mecf...
Good piece on this topic by @bmhughes.bsky.social bsky.app/profile/bmhu...
Yeah, me too. Why would they publish such a shitty piece? I know the editor of the Lancet never wanted to do anything to rectify the PACE trial piece.
Thanks so much for this!
Great piece on what's wrong with the BMJ review on CBT/GET in Long Covid. Thanks @bmhughes.bsky.social for explaining.
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".
That explains a lot about that new Canadian guideline. I didn't even check, but yes, it's the 2000s all over again. Will this ever stop?
Haven't got the spoons to do an elaborate piece on all the methodological problems this paper encompasses, but @sunsopeningband.bsky.social made a good start: bsky.app/profile/suns...
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/...
