Patients with Power

How would you describe the trauma / effects of doctors dismissing you, mocking you, gaslighting or minimising your symptoms when you're really sick or in pain, to someone who hasn't heard about it but wants to understand? #NEISvoid #EDS #pwME

Hey #NEISvoid, I'm on threads if you'd like to follow me there 😊⚡ @ptswithpower" target="_blank" rel="nofollow noopener">threads.com/@ptswithpower

People who have #depression are not addicted to our antidepressant medication. People who have #ChronicPain are not addicted to our pain medication.

“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.

@kerinaples @CMerandi Long ago

@CMerandi When does this become malpractice?

Medical school graduate offered money to not prescribe opioids.

WHAT DO WE HAVE TO DO - go on a meds strike💊 and hurt big pharma - where the power's at 💰 - so they pressure the government on our behalf🏛️?? To start treating sick people as human beings and enforcing clinicians to meet their basic job requirements and ethical codes? (listen to patient, treat with respect, stay up-to-date in field etc...) Obviously we can't all stop taking our meds but I mean, appealing to compassion has not been working... ⚡️ #NEISvoid #disability #pwME #DoNoHarm

WHY is this happening AGAIN? ⚡️ thecanary.co/uk/analysis/20… #NEISvoid #pwme #MECFS

Docs, How many patients have you misdiagnosed? Trick question. You'll never know. ⚡#MedEd #eds #pots #pwme

Doctors often don't go by the book when it comes to treating patients. They like to cut corners. They usually don't see the consequences of the corners they cut off. #ChronicIllness #Disability

@2laurabone Yes!! I already don't have the time or energy to get through things like my washing or all the basic hygiene tasks I need to do in the day, and you expect me to be able to find 15 minutes a day for knee exercises?

@PtsWithPower ***This!*** Especially when you're sick and your "full day" of productivity is less than 3 hours.

Argh when people suggest you do something and follow it up with "It's just 15 minutes a day - everyone can find 15 minutes" If I took 15 minutes out of every day for all the things I'm supposedly able to find 15 minutes for, I'd have no day left!

After asking to finish speaking, he suddenly refused to examine me and wrote a referral that would not be taken seriously by anyone. "She worries she has #cancer" - but didn't include any of the red flag symptoms or signs. He tried to hide it from me, then refused to change it.

Here's the most recent retaliation: I needed an urgent biopsy. My GP was away so I had to see a random. I wrote a few sentences beforehand to read out to describe symptoms etc. He interrupted me before I could finish, and I just asked for him to let me finish.

What have doctors done to retaliate against you, when you tried to correct them or advocate for yourself as a patient? I'll add some of mine below. ⚡#NEISvoid #heds #pots #pwme

@emmiskyten Sounds about right. 🧱🙂‍↕️ (That is me thinking about what conversations with these types of doctors are like)

@PtsWithPower Thanks. For this person, the research undermines his career and power so instead of saying "sorry I got it wrong" he just pretends the research doesn't exist 🤷 which is not the best strategy long-term.

@emmiskyten Oh god I'm sorry. Why are they so allergic to research!?! 😩 This stuff is so harmful 🫂

@PtsWithPower Diagnosed me with somatoform disorder because "I was the most extreme patient" he had ever seen just because I talked about latest long covid and ME research. I wasn't agressive or anything. I just challenged what he was telling me about POTS and long covid as "functional".

Doctors have power over their patients. Some are responsible with it, many abuse it. It's not just carelessness and being overworked. Let's be real for a second: There's nothing to stop people with high functioning #narcissism or psychopathy from becoming doctors. They're protected by the assumption that people become doctors because they want to help people. In my experience, I've found some to just like the power trip. ⚡#ChronicIllness #ChronicPain #DoNoHarm #spoonies

Urrrgh every time! 😆😭

“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

This right here. ⬇️ #chronicillness #chronicPain

The CFS orgs who argued that it was psychiatric, what was your read on them - do you think they genuinely thought ME was psychosomatic, or they knew they were wrong but were benefiting financially from it being psychiatric so that's what they fought for? No pressure to answer that. The reason I ask is because you'd have to be such a bad scientist to really believe what they were arguing for. And the way I've seen these psychosomatic doctors argue, it's not in good faith, it's like they know what they're saying is wrong so they try to shut down the discussion rather than having an honest conversation. Thank you for fighting. I know it doesn't feel this way, but you have made a difference.

@PtsWithPower I've told this to all levels of the "ME/CFS community" From scattered individuals, to support groups, to various institutes, right on up to the CDC officials themselves. Since no one cares, the CDC/NIH see no reason to change their policy.