Saud

“You’re not the same anymore. You’ve lost your spark. You’re so negative now.” Yeah. I also lost my ability to walk, my freedom, my independence, my job, my social life, my future as I imagined it & so much of the life I used to know. But sure. Let’s call it a personality problem

Can we collectively agree to leave the “another LDN trial” era in 2026?

I’ve tried brain retraining, somatics, visualization, meditation, and every mind-body trick out of sheer desperation to recover from ME / long covid. Hands down some of the most useless things I’ve ever tried. Zero improvement in my functionality. If you claim you cured your mecfs by retraining your brain, forgive me for questioning that narrative. Some of us are dealing with a debilitating physiological illness, not a mindset problem.

Apparently using one illness as an example to highlight the stigma surrounding another is now considered an attack. The selective understanding continues, even in the replies. Fascinating.

Type 1 diabetes: The immune system attacks insulin-producing cells. People: Ahh yes, makes sense. Understood. ME/CFS / long covid: Immune dysfunction and impaired cellular energy production. People: Ahh no, sounds psychological. Probably anxiety. Have you tried exercising and thinking positively? The selective understanding is fascinating.

This account is becoming increasingly annoying. We get it, you believe exercise and nervous system regulation are the answer to ME/CFS. But repeatedly showing up under my tweets to push that narrative, especially when I’m sharing my own experience of being harmed by exercise, is getting exhausting. Please leave me alone.

You need to ask yourself why someone else’s disability threatens your worldview so much that you’d rather question their desire to recover than question your own ignorance.

That’s exactly what I thought, so I exercised. And guess what happened? 24 hours later, I crashed so severely that I became disabled. Two and a half years later, I’m still largely bedridden, living with the consequences of that ONE attempt at exercise. So no, exercise is NOT universally beneficial, and the idea that it’s always good for your health is not only false but can be dangerously harmful for people with certain medical conditions.

This might sound like a dumb question, but has anyone developed dysautonomia after using recreational drugs? Or experienced it as a result of a drug-induced injury? Such as like MDMA?

I ask because, two years before developing Covid-induced ME, I began experiencing sensory intolerance, and I couldn’t figure out whether it was PPPD, orthostatic intolerance, Dysautonomia or something else.

Besides ME / Long Covid, migraine & autism, what other conditions can cause really severe sensory intolerance - light, noise, movement, screens, crowds, etc.? Curious what diagnoses people have where sensory overload is a major symptom.

My parents are pressuring me to attend my sister’s wedding, which is in a different country. I haven’t left my home or bed in 3 years. I’m severe & they expect me to get in a car, take a flight, and attend a wedding with 400 guests & overwhelming sensory stimulation.

My parents asked, “With all the meds you’ve been on for years, why are you still this sick? Shouldn’t you be walking and running by now?” I genuinely didn’t know what to say. It hurts living with parents who don’t understand and make you feel guilty for being sick.

Will there ever be a treatment that reliably prevents PEM in our lifetime

this!! and you don’t want to sound negative by constantly talking about how bad things are, but you also don’t want to pretend everything is fine or lie about how you’re actually doing when it’s not. ugh 😭