Discover and read the best of Twitter Threads about #stoptheharm
Most recents (6)
🧵 thread
I never thought we would have to take the old stories out of mothballs again. 🕸🪰
But in 2022, the German institute IQWiG recommends the harmful treatment GET for mild and moderate ME patients.
So here we go again... 😮💨 What is Pacegate?
1/23
I never thought we would have to take the old stories out of mothballs again. 🕸🪰
But in 2022, the German institute IQWiG recommends the harmful treatment GET for mild and moderate ME patients.
So here we go again... 😮💨 What is Pacegate?
1/23
IQWiG's recommendation to GET in mild and moderate ME will result in many bedridden patients. It refers to the discredited PACE trial. Statistics professor Bruce Levin called PACE "the height of clinical trial amateurism."
2/23
2/23
Already the inclusion criteria of the PACE Trial are non-specific. The Oxford criteria are so broad, it is questionable how many participants had ME. In 2015, the US Agency for Healthcare Research and Quality wrote "[The Oxford criteria] may impair progress and cause harm."
3/23
3/23
International friends with #LongCovid and/or #MECFS, international researchers, orgs & clinicians - you are allowed to submit your thoughts & experience to the Australian Parliamentary Inquiry into LC. You can help shape the future of treatment & care Australians #pwLC: ➡️ 1/🧵
What does this mean? The government in Australia has formed a committee - members of parliament, including several medical doctor MPs - to hear people’s stories of Long Covid AND experiences of Repeat SARS2 infections.
They will write a report. 2/ 🧵
aph.gov.au/Parliamentary_…
They will write a report. 2/ 🧵
aph.gov.au/Parliamentary_…
I’m told Australians and international individuals & organisations are encouraged to share 📄 written, ☎️ audio or 📱 video submissions about one or more “Terms of Reference”:
Point 6 seeks to understand “Best Practice” including internationally
3/🧵
aph.gov.au/Parliamentary_…
Point 6 seeks to understand “Best Practice” including internationally
3/🧵
aph.gov.au/Parliamentary_…
It’s cute that the HANDI guide by @RACGP prides themselves on claiming they’re “evidence-based” 😂😂 When they still only have one entry for #MECFS and it’s “Graded Exercise Therapy” . 👀 Let’s dive in shall we?
1/ 🧵
#MECFS #StopTheHarm #LongCovidAus
racgp.org.au/clinical-resou…
1/ 🧵
#MECFS #StopTheHarm #LongCovidAus
racgp.org.au/clinical-resou…
First up, this is not targeted at any individual. The (mis)treatment of ME patients in Australia is systemic and institutional - spanning education to guidelines, welfare & insurance.
That said, individuals can make a positive difference. Will you be one of them? #StopTheHarm 2/
That said, individuals can make a positive difference. Will you be one of them? #StopTheHarm 2/
Today let’s look at the HANDI guide - a set of non-pharmacological interventions pby the Royal Australian College of General Practitioners.
It’s a great resource & doctors refer to it for “evidence-based” guidance…
> The only entry for ME/CFS is on Graded Exercise Therapy… 3/
It’s a great resource & doctors refer to it for “evidence-based” guidance…
> The only entry for ME/CFS is on Graded Exercise Therapy… 3/
Ich habe gestern mein ganzes PVA Gutachten bekommen. Was darin steht ist einfach nur unglaublich!
Vorab wie es wirklich um mich steht: Ich habe in etwa 10 Bell, bin bettlägerig, kann selbst noch aufs Klo gehen, 1x am Tag Zähneputzen,
1/ #Behördengeschichten #ChronischKrankAT
Vorab wie es wirklich um mich steht: Ich habe in etwa 10 Bell, bin bettlägerig, kann selbst noch aufs Klo gehen, 1x am Tag Zähneputzen,
1/ #Behördengeschichten #ChronischKrankAT
wenns gut läuft 1x die Woche duschen. Stiegen kriechen ist nicht mehr ohne #crash möglich. Von einem Arztbesuch, wo ich kurz sitzen muss bekomme ich in der Regel einen #crash von 2-4 Wochen.
2/
2/
Auch kognitiv kann ich mich auch nicht mehr um mich selbst kümmern. Ich kann mich nicht auf mich verlassen. Ich kann mir kaum was merken und kaum kognitive Leistung erbringen. Auf Twitter meine Gedanken aufzuschreiben ist mein Maximum. Arztgespräche gehen nur unter Adrenalin.
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3/
#URGENT Twitter, I need your help-my health is critical I travel abroad to recieve trx in 4 weeks as a #pwME- An anonymous donor has covered the cost of my #HelpApheresis trx🙏🏽🦋 We are Rapidly trying to raise costs co-trx, accommodation, ✈ & care costs. gofundme.com/f/help-Trish-a…
I am severely disabled. I have been since the onset of my illness. I suffered rapid deterioration and I'm now suffering widespread structural degeneration after being gaslit heavily for the past 8yrs. This is a chance to Save My Life. My health has been critical all year.
I have been in and out of A&E all year referred there by my specialists doctors and the ambulance services for emergency plasmapheresis treatment and they keep sending me home because I'm immunocompromised I wouldn't be immunocompromised if they actually treated me.
Deconditioning theory officially expelled !! Scientists prove what's causing exertion intolerance in #LongCovid- Link it to ME findings and likelihood of developing #MECFS. Have we just solved the pathology of acute to chronic post viral sequel??
jornaldepneumologia.com.br/details/3604/e…
jornaldepneumologia.com.br/details/3604/e…
Can we now fully do away with the biospychosocial theory and start investing research into developing effective treatments?? #BPSbeGone #StopTheHarm #EndTheStigma #FundTheResearch #FindTheTreatments
"through invasive CPET, that O2 delivery was normal and associated with reduced peripheral O2 extraction and elevated mixed venous O2 saturation compared to controls, resulting in reduced peak VO2, indicating lower diffusive O2 delivery to the mitochondria.(3)"
