Patient-scientist fighting for medicine based in SCIENCE; NOT BIAS⚡Calling out harmful healthcare culture⚡Breaking down difficult doctor behaviour✍️🧐

Joined November 2020
Patients with Power retweeted
One of my biggest fears in life has always been being alone and chronic illness is the loneliest thing I’ve ever experienced.
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Patients with Power retweeted
“#Disability is a full-time job. I’m a professional patient… Some days I’m barely managing to shower and if by chance I’m having a good day I have my own dog, a backload of housework, and grocery shopping as priorities.” buff.ly/4ejbFnP #ChronicPain #ChronicIllness
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Patients with Power retweeted
“We all have the same 24 hours” As a chronically ill/disabled person I have a lot less usable hours than a healthy/abled person. And of those that are usable they’re still not as usable as they used to be when I was overall healthy. Lots of pacing/resting.
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Patients with Power retweeted
“Please do not confuse the #opioidcrisis with those living in #chronicpain. Please do not do chronic pain sufferers the disservice of removing a lifeline. It’s a death sentence for some and a life sentence to greater misery for the rest.” buff.ly/3s1nlV9 #opioidhysteria
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Patients with Power retweeted
This right here. ⬇️ #chronicillness #chronicPain
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"I don't think healthy/not-chronically-ill people realize how years of life disappear while waiting to see a new doc, waiting for test results & insurance approval, waiting for a new treatment to work & another & another forever." @brickandbutton #ChronicIllness #MySeveralWorlds
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Patients with Power retweeted
During my complaint, he said the injury he'd inflicted upon MY body was 'misfortunate.' It wasn't 'misfortunate' it was grossly negligent and downright cruel. HE made the purposeful choice NOT to warn me of the serious KNOWN risk of intimate crush injury during the #InformedConsent process pre-hip arthroscopy. I would have declined the 'simple' hip surgery had I been informed. I would NEVER have risked my sexual function, my sexual future, had I been given the choice, but I wasn't. Legally, a patient has to be #Informed, so why do countless medical professionals get away scott-free when failing to warn patients and causing life-altering, devastating, preventable harm @wesstreeting? @EstherMcVey1? @gmcuk? @HCAHospitalsUK? @PGHosp? @MHRAgovuk? @BupaUK? @CareQualityComm? Just like the #PostMasters we protest at the barbaric, inhumane treatment we have been subjected to. When will there be action? Please sign and share in support. Thank you. petition.parliament.uk/petit… 🙏✍️🇬🇧 #NonUrgent #Elective #HipArthroscopy #PreventableHarm #ForAllHarmedPatients #ToPreventFutureHarm #PerinealPost #Mesh #PSSD #Hysteroscopy #Primodos #SodiumValoprate #Vaccines #BloodContaminated #Labiaplasties #UnlawfulDNRs #SexualAssault.... the list goes on.
The 7 February 2012, age 34, was the last time I had an orgasm. It was the night before a hip surgery. It's been over 13 years since this man crushed my clitoris against my pubic bone with a barbaric device called a #PerinealPost. It's an excruciating loss, which still makes me cry. I went under the knife for an 'elective' non-urgent #HipArthroscopy to improve back pain. It was sold to me as a 'simple' key-hole hip surgery. Unknown to me, during the #InformedConsent process, my surgeon made the purposeful choice to deny me details of a serious known risk. HE knew the #PerinealPost would be used between my legs as traction to open up my hip joint, and HE knew its use was known to cause intimate crush injury and nerve damage, yet HE decided I didn't need to know this vital information pre-hip surgery. HE was happy to risk MY sexual function WITHOUT MY consent. I detest this man. I detest him, not only for the medical assault on my body, because, let's be honest here, that's what it is, but also because of his complete disregard for his actions. There has been no accountability, only excuses, lies, and pathetic, cowardly cover-up. To add insult to devastating injury, during my complaint, he gloated that intimate crush injury was a known risk and had the utter gall to call the destruction of my sexual future 'misfortunate.'  The loss of my sexual function was not 'misfortunate' it was a callous decision by him to proceed WITHOUT MY consent. I would NEVER have risked my sexual function, had I been made aware of the risk. I was not given a choice. I did NOT consent.  I feel assaulted. I feel violated. I can't tell you how sick to the pit of my stomach it makes me feel, when the medical world insists #InformedConsent is a legal requirement, yet they flout it willy nilly, harming patients as they go without repercussion. All the medical bodies supposedly there to protect the patient and enforce legal requirements don't. They just don't. I am one of countess patients denied #InformedConsent, denied vital details of serious known risk and needlessly harmed. We were all blindsided. We all trusted the medical professional sat there in front of us. We all believed we were in the best hands. Stand with us UK 🇬🇧💪 Protect yourself, and those you love from needless harm. Please take a moment to sign and share this petition to make #InformedConsent mandatory: petition.parliament.uk/petit…✍️🇬🇧 Without enforcement, there is no deterrent to cause needless harm. #DeniedInformedConsent  #NeedlesslyHarmed #PerinealPost #Mesh #Primodos #BloodContamination #PSSD #SodiumValproate #Vaccines #Labiaplasties #Hysteroscopy #AssistedSuicide...the list goes on. #ForAllHarmedPatients  #ToPreventFutureHarm  #BupaFail #THISisBupaHealth #NHSfail @wesstreeting @JuliaCumberlege @EstherMcVey1 @gmcuk @MHRAgovuk @HCAHospitalsUK @DHSCgovuk @CareQualityComm @ISCAS_UK @NHSEngland
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Patients with Power retweeted
What in the actual fuck is going on. It’s not healthcare it’s monstrous abuse
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Patients with Power retweeted
i am simply not built for consciousness today
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Patients with Power retweeted
Why can't voices like this be heard more often and why can't advocacy be centered around people in this situation as *top priority*?
very severe ME without proper care is just right out dangerous. i have 1 hour of care a day. when i'm paralysed, nothing works. i can't flush tube and change from feeds to water. tube will block, that will cause me to have an operation to insert a new tube. that's just 1 example.
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Patients with Power retweeted
Rosie Barrett, writes on Severe ME and hospital care thereforme.uk/p/sensory-hell… "Hospitals should be places of healing – but for people with severe ME, they are often sources of harm." Screenshot from the Chronic Living Therapy newsletter chroniclivingtherapy.com/5-e… #SevereME #MEcfs
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Patients with Power retweeted
Happy Halloween to everyone suffering from a monstrous disease.
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Patients with Power retweeted
The sleep disturbance has a distinct pattern in some Long COVID patients, which I call “ROTATED SLEEP”. In my daughter’s case, her sleep shifts by one to two hours each day, so she ends up living at night, in between, or during the day, depending on where she is in the cycle. This pattern is so consistent that even when she takes her sleep medication, it doesn’t work, it’s as if she hasn’t taken anything at all. She eventually learned to adjust the timing of her medications according to this rotated sleep cycle. You might ask, “Then why not skip the medicine?” But without it, she doesn’t sleep at all. After many rounds of trial and error, the combination that works best for her is 20 mg of melatonin (only the Pure Encapsulations brand works for her) together with 0.5 mg of alprazolam, taken about one hour before her expected sleep time. Do you also have a distinctive sleep pattern or a medication that works for you? I’m asking to gather relevant data under one post for the community.
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I can’t emphasize enough how much accessibility benefits everyone. Ramps, elevators, ventilated air, automatic doors. You caring about accessibility is caring about your future. You will become disabled unless you die young. Investing in disability is investing in yourself.
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Patients with Power retweeted
Some allergies are respected and believed more than others. Some illnesses are respected and believed more than others. Some disabilities are respected and believed more than others. I wish we were all respected and believed.
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Patients with Power retweeted
If you have something that cannot be diagnosed in 5-10 minutes, you’re probably going to be sent to psychiatry. This has to change.
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Patients with Power retweeted
This!!! By the time I found a specialist who actually believed me, diagnosed me, and treated me I was already doing so bad.
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Patients with Power retweeted
Replying to @DafoeWhitney
It's striking how resilient pwME & Long Covid need to be, just trying to live & survive, if possible, with this tortuous illness. Whilst at the same time, being dismissed & neglected by most of society & healthcare. Astonishing. 💙
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Novel concept: nobody should have to “fight” to get proper, compassionate medical care. #Care4Complex
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Patients with Power retweeted
In case anyone needs this. This people. Life should not have to be this hard. #MECFS @dysclinic @IhabFathiSulima @DrScomaME_CFS @DrJBhattacharya @dr_todd @BatemanHorne @MEActNet @minadjenkins @brian
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