Hi I’m sharing my friend Sean’s gofundme who has been diagnosed with the inflammatory/autoimmune type of Small fiber neuropathy. Any donation helps for him to try treatments that could improve his quality of life. A comment or retweet helps too 🤍 #longcovid #SFN www.gofundme.com/f/funds-to-a...

I just signed - will you join me? our.actionstation.org.nz/petitions/fa... Anyone anywhere can sign. Pls share too

#RoseTuesday - A few October blooms on my bike loop. The last phone pic from late August. #MEcfsEgress #BloomScrolling DailyNaturePics 174

Hey everyone it’s my birthday. I feel to physically sick to celebrate again so it’s another birthday missed, another year not lived. Reality of living with #MECFS Part of me hopes this will be my last year. I tried to make the best of today until I had a horrible flare up again. I feel alone

🇳🇱 Hulp/advies nodig #mecvs #mecfsNL #neglect

One of the worst things about living with #MECFS: My mind wants to go out & do stuff (visit a gallery, go to the park) but my body says no. Just getting to the supermarket & back is enough for today. V frustrating 😫 #ChronicIllness

A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME. Is there anyone in the international community who can help?

🧵Sanne from the Netherlands needs urgent help. She can no longer eat and can no longer tolerate a feeding tube. Only TPN (nutrition through the blood) can save her. Without it, she will die of starvation. #MEdicalneglect #MECFS

#WhatILoveAboutMaeve'sLegacy She read Foucault before I did. I am 33 years older than her.

I was floating on the sky tonight. If you look really carefully, you can see the eagle that is watching me from the shore. I live for evenings like this.

Scotland 2025 A study of 13 people with Long COVID found every participant lost income, many faced job loss, rising costs and barriers to benefits. 8% of adults report Long COVID, with highest rates in deprived communities. www.povertyalliance.org/wp-content/u...

To live everyday with visual disturbances , inflamed feeling in head, chest stabbing pains as a young person and just be told nothing can be done.

I have begged for help for years . Even with non chronic illness related struggles they don’t help me further. Cant get EMDR for cptsd , cant get diagnosed with ADHD which affects every aspect of my life, can’t get help with OCD. I have constant headaches and visual disturbances. They don’t help

🤕 No help , no answers , no treatments [1/3] Several times a day, I feel intense pressure and an inflamed feeling in my head, usually from being upright too long, it’s especially bad after bending over. Even without a bad headache, I frequently feel like I have a concussion.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

To remember another M.E. community member and friend who’s life has ended too soon 😔🌹🦋

Clip from BBC Look North Kate Warner, who is housebound with #MECFS, fears benefit cuts could push people who shouldn’t work into jobs that makes them more ill. She says people like her are treated as a problem that costs money — and the government just doesn’t care.

To be sick but not believed is always being judged and getting belittling remarks when you can't do things like an average healthy person can. Since childhood I have had very unkind remarks by hundreds of different people. It's hard to then not feel inadequate.

A few years ago at the age of 24 my health drastically declined and I developed many new symptoms. Please if not #hEDS what’s going on with my connective tissue. I’m also experiencing abnormal partial fatloss , drastic hairloss. Im always told its stress or inactivity idk what to do #MECFS

Does anyone have good or bad experiences with low dose Amitriptyline? They want to prescribe it for pain. #mecfs #longcovid

How life is going:

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I don’t know if this is blood flow related or neurological but I will suddenly lose feeling in my leg(s). Especially after sitting but I’m not even crossing my legs or anything. I had this since I’m 11. Id get up and fall over cause my leg(s) gone numb.

Some of our most powerful Long Covid advocates have dipped out not because they’re better, but because the crab bucket mindset in this community wore them down. If you’re finding your voice now: Don’t let someone else’s trauma response silence you #LongCovid

Wish we could all confront a doctor who dismissed us, belittled us or wrongfully psychologised a physical health condition. Very satisfying. Also sad this episode is from 1989 yet here we are in 2025 🫠

I hope (all) victims (past and current) of the #GreatestMEdicalScandal are going witness in their lifetime some reparation and contrition for this historical and unspeakable abuse.

"Thoracic outlet syndrome joins other anatomical + disorders such as craniocervical instability, spinal stenosis, and cervical myopathy that can produce or exacerbate ME/CFS/FM symptoms that are not typically associated with them."

Keep talking about #MedicalGaslighting, keep sharing your stories and speaking out - It might not feel like it, but we've made a lot of progress in the last 5 years. eg: ✨People who don't have chronic illness (but can support us) are becoming familiar with the term.✨ 🧵 #neisvoid #eds #pots #pwme

🧵1. Every day I’m losing more hair. I have bald spots, and a receding hairline. With any health issue most GP’s almost always refuses to refer me to a specialist, and they don’t do thorough bloodwork either.

My experience so far. On twitter: “post viral illness is not real” “long covid is only the clot shot” “ME is just laziness” Bluesky: several people“anti-vax troll” Interesting experience not sure yet which side it more obnoxious 🤔

1/ "Eine Ärztin habe Tobias #Borreliose diagnostiziert und ihm versichert, dass die Therapie harmlos sei." Tja, denkste. Assistierter Suizid - Ja. Richtige Therapie - Nein! GRAUSAM! @dorobaer.bsky.social‬ ‪@bmg-bund.bsky.social‬ #MCAS #POTS #Mitochondrienschädigung #MEcfs www.rtl.de/news/tobias-...

Im Kirsty and I’m 27 years old. I’ve had health issues most of my life but M.E. since the age of 11. My severity has fluctuated a lot over the years until everything got progressively worse in 2021 after my Pfizer vaccination and a covid infection 2023. I just want a better quality of life

I just made an account since twitter/X keeps having issues 😮‍💨 I don’t have a clue how Bluesky is different from X but will have to figure this out. I have the same username @kirstymecfslife

Ik geloof steeds meer in een rol van afwijkingen in gladde spiercellen als onderdeel van de pathologie van #MEcvs / #longcovid Bloedvaten en lymfevaten zitten vol met gladde spierweefsels die zorgen voor transport energie, bouwstoffen, immuuncellen, afvalstoffen etc www.trouw.nl/wetenschap/s...