Patients with Power

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

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

Me too, I feel you. 🫂🤝🩵

Yeah this is such a tricky problem.

My thinking has been to try to grow on social media and 'spread the word' for us to unite and organise, share my ideas and a plan, but every time I get established on a platform, the platform goes to shit - it's like sand slipping beneath my feet.

If we unite as patients and start to recognise the patterns in how we’re treated -or mistreated- in healthcare, we get stronger. There’s strength in numbers, and we’ve got numbers. #NEISvoid

All of us, pressuring the those in power to start treating sick people as human beings and ensuring that clinicians meet their basic job requirements and ethics codes.

Because it isn't just pwME that this affects, and that die from this. That is not to discount the
immeasurable suffering of #pwME.

I'm thinking more big picture - when I say 'we' I don't just mean people with ME, I mean all patients. Everyone who has a chronic condition and knows what it means to be abused by healthcare providers when you're vulnerable. #NEISvoid

Obviously we can't all stop taking our meds but I mean, appealing to compassion hasn't worked.

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?
⚡️ #NEISvoid #disability #pwME #DoNoHarm

A screenshot of an article by the Canary which reads "an NHS hospital is starving a severe ME patient and now has stopped giving her fluids", published on 22 Jan 2026.

WHY is this happening AGAIN?

⚡️ www.thecanary.co/uk/analysis/... #NEISvoid #pwme #MECFS

I want to do this too.
"I explained I had symptoms X, Y, Z. I said I wanted to be tested for condition A as they are all classic symptoms. You said I didn't have condition A and didn't test for it. I've since been diagnosed with condition A. Listen to your patients. Sometimes we know more than you."

Thank you 💜

If we stop fighting for doctors to have awareness of each of our specific conditions, join forces and fight for doctors to start educating themselves and listening to patients, I feel like we might actually get somewhere.
⚡ #ChronicIllness #EDS #pwME

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

THE LONG COVID ULTIMATE BINGO Grid showing lots of irritating comments people with long Covid and other chronic illnesses may hear said to them

Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these

This was posted as a comment on my FB page today, but I'm not sure who created it originally.

#LongCovid #MEcfs #chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie

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

(That is my "I come in peace" sunflower btw 😆 I just created it, but that was the sentiment - I appreciate your comments and spreading the word, and especially since you have ME too and I know the energy it can take to write multi-post comments 💜)

Oh, in the list, those are three different options: complex, invisible or rare. Not three different ways to describe the one set of conditions.

I was referring to conditions that really are rare - people who have them face a lot of disbelief and have a really difficult time getting a diagnosis. 🌻

But I am definitely with you that conditions are never really invisible and 'complex' is really not a helpful word to mean 'multi-systemic'.

I like medically neglected. Also, multi-systemic rather than complex.

I think of the terms as "too complex for your average physician, who doesn't want to learn" and "invisible to your average physician, who doesn't want to look"

- people who have visible tattoos, alternative-style piercings and hairstyles, or dress alternatively (i.e. "the blue hair sign")

Oh, here's a wild one:

- other healthcare workers

Great additions, thank you 💜

Can you think of any other groups that deal with extra bias in healthcare?

So far I've got:

People who have/are
- women
- not the dominant race
- mental health conditions
- complex, invisible or rare conditions
- different body shapes, thin/fat
- disabled
- age, old/young
- lgbtqa+

#NEISvoid

I'm so sorry about the way you found out your cervix was removed in the hysterectomy. It's not okay. 💜

I'm in the Trying Again stage after 3 years of refusing to see docs. I'm only seeing "patient-approved" ones who know my conditions, hoping it'll be different. Ugh god I hope it'll be different.

I really feel you on this. 💜
Tried shaking the stick, arm got too sore.
I'm tired too, and so disillusioned and disgusted at healthcare.

They sighed and said they'd have to fit me in. Then the person doing the ultrasound rushed through it and it was like she didn't try at all. She said that all the problem things I was getting the scan to check on had 'gone away' but I think it was more that she just wanted me to go away.

Wow that is awful. I'm sorry that happened to you.

I once showed up for a scan which I'd changed the date of on the phone. The receptionist must not have recorded it properly because when I arrived, they said they had no record of my appointment and treated me as if I was deliberately making it up

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 not let me see the referral and then he 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.

Wow that's so bad.

My endo suddenly became uncontactable after he'd given me the wrong prescription. I have adrenal insufficiency and could have died from the medication suddenly disappearing. I think it was the pharmacy that saved me, can't remember - I got really sick. I just know it wasn't him.