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Patients with Power @PtsWithPower

Rogue neuroscientist fighting for healthcare based on science; not bias. Health scams & dodgy science 🧐 Patient rights & power dynamics⚡️I like solving puzzles Joined November 2020
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PtsWithPower Profile Picture

Patients with Power @PtsWithPower

4 weeks ago

“In emergency rooms, we need to make it an actionable offence, withholding pain medication from somebody who is suffering.” #cpp

CMerandi Profile Picture

Claudia A. Merandi @CMerandi

4 weeks ago

“In emergency rooms, we need to make it an actionable offence, withholding pain medication from somebody who is suffering.” #cpp

Patients with Power retweeted
TheProselytiser Profile Picture

Proselytiser @TheProselytiser

2 months ago

@MedGaslighting My sister sought a myeloma diagnosis for years. GP told her time & again she was a hypochondriac. In the end she self diagnosed but had to take 18 yr old daughter to the GP as advocate. She was finally 'granted' a blood test by her GP. She was stage 2 (myeloma only has 3 stages.)

PtsWithPower Profile Picture

Patients with Power @PtsWithPower

a month ago

“Since September, my best friend, Chloé, has been bedridden due to Long Covid-Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (#MECFS). It's been a month since she suffered the biggest relapse she's ever experienced.” cont👇🏻

predi_cam_ents Profile Picture

camilla @predi_cam_ents

12 months ago

“Since September, my best friend, Chloé, has been bedridden due to Long Covid-Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (#MECFS). It's been a month since she suffered the biggest relapse she's ever experienced.” cont👇🏻

PtsWithPower Profile Picture

Patients with Power @PtsWithPower

a month ago

Why is it that every time after I shower, during the brief moments I have to be standing to get dressed, someone somewhere in my autonomic nervous system decides it’s the perfect time to step on the sweat button? #POTS

Patients with Power retweeted
TomKindlon Profile Picture

Tom Kindlon @TomKindlon

a month ago

2/ "The historical use of Cognitive Behavioural therapy (CBT) and graded exercise therapy (GET) as a treatment for ME/CFS stemmed from an inaccurate formulation that psychological factors are key in the causation and/or maintenance of symptoms..." #MEcfs #CFS #PwME

Patients with Power retweeted
SurvivingCFS Profile Picture

Kendra F @SurvivingCFS

a month ago

by: @SurvivingCFS #LongCovidAwarenessDay

Patients with Power retweeted
GeorgeMonbiot Profile Picture

George Monbiot @GeorgeMonbiot

2 months ago

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell. A massive and shocking story in this week’s column. theguardian.com/commentisfree/…

Patients with Power retweeted
davidtuller1 Profile Picture

davidtuller @davidtuller1

a month ago

It is truly the emperor-has-no-clothes at the highest levels of British medicine/academic/journalism. A huge disgrace for all around. Sharpe, Wesseley, White, etc have a lot to answer for. The PACE trial is fraudulent.

GeorgeMonbiot Profile Picture

George Monbiot @GeorgeMonbiot

a month ago

It is truly the emperor-has-no-clothes at the highest levels of British medicine/academic/journalism. A huge disgrace for all around. Sharpe, Wesseley, White, etc have a lot to answer for. The PACE trial is fraudulent.

Patients with Power retweeted
emilyesfraser Profile Picture

emily fraser 🌿🐌✨ @emilyesfraser

2 months ago

When Osler's Web was published in 1996, I was 11 years old. I was being told I could do anything w/ my life. I had no idea my future had already been decided. 9/

Patients with Power retweeted
emilyesfraser Profile Picture

emily fraser 🌿🐌✨ @emilyesfraser

2 months ago

When you get sick w/ ME you not only find yourself w/ a devastating & disabling disease, but you also inherit its decades-long history of stigmatization & mistreatment. It's a traumatic history to learn about, made more painful by daily interactions. 4/

PtsWithPower Profile Picture

Patients with Power @PtsWithPower

2 months ago

Video overview about vascular compression symptoms and their relationship with #EDS and #POTS. vimeo.com/916337500?shar…

PtsWithPower Profile Picture

Patients with Power @PtsWithPower

2 months ago

This is such a well-written, tragic story of a mother and a daughter both denied treatments for their medical conditions because of stigma and ignorance, and how badly this affected their lives. Thank you for sharing it, @ravensspirit68. #NEISvoid #CPP #MyalgicEncephalomyelitis

ravensspirit68 Profile Picture

Arianne @ravensspirit68

4 months ago

This is such a well-written, tragic story of a mother and a daughter both denied treatments for their medical conditions because of stigma and ignorance, and how badly this affected their lives. Thank you for sharing it, @ravensspirit68. #NEISvoid #CPP #MyalgicEncephalomyelitis https://t.co/QJwr7fHjnm

Patients with Power retweeted
ravensspirit68 Profile Picture

Arianne @ravensspirit68

2 months ago

Since my pain care has been restored I've lost 31 lbs. I'm able to garden some & paint again. I'm writing articles & am working on writing a book. Advocacy efforts have increased as I'm not lying in bed in full system failure & thoughts of not being here are rare. #PainCareCrisis

Patients with Power retweeted
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Hannah Davis @ahandvanish

5 months ago

This is an excellent, well developed test capturing the severity of loss of functional capacity in ME/CFS & infection-associated chronic conditions - I hope we see it used in #LongCovid research & clinical trial outcomes. And I hope it can show what everyone stands to lose 1/

elle_carnitine Profile Picture

elle carnitine 🍉 @elle_carnitine

5 months ago

This is an excellent, well developed test capturing the severity of loss of functional capacity in ME/CFS & infection-associated chronic conditions - I hope we see it used in #LongCovid research & clinical trial outcomes. And I hope it can show what everyone stands to lose 1/

Patients with Power retweeted
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Neurologist Mom @NeurologistMom

2 months ago

As if living with an unbearable condition isn't torture enough for a child who is bedbound and cannot tolerate any stimuli, such as sounds or lights, why insist on an in-person appointment just to order very basic blood tests? Kudos to the University of Washington for taking…

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