u/EnvironmentFit975

In this community, using AI to help you write is most welcome.

***You don't need to declare that you have used AI.
***You don't need to worry about what others think.

I get it. We are all suffering so much from cognitive issues, from fatigue, and so much more. For many of us, the only way we can contribute is to narrate our feelings to AI and then get it to help us put it in some kind of logical order that makes sense. If we couldn't do that, we wouldn't even comment. We wouldn't even engage.

I am sick and tired of people diminishing other people's contributions around the topic of AI. We all know that specific internet detective who always has to go, "I can recognize ChatGPT, so I'm going to be a dobber." I am just completely over that kind of behavior.

In the health and chronic illness world, they weaponise "safety" and "accuracy." They try to gatekeep by saying that if you use AI, you are somehow spreading medical misinformation or that your personal experience isn't "valid" unless you wrote every single word yourself.
They use that as an excuse to demand a declaration, acting like they are protecting the community when really they are just policing people who are too exhausted to type.

It's really very simple. If you read a post or a comment and you like it, regardless of whether AI was used, you can engage with it. If you read a post and it's not for your liking, you can move on without comment.

It's simple common decency. Let's stop trying to micromanage everyone and instead, just support each other and allow people to share their experiences in whatever way works best for them.

I’ve been on 7mg nicotine patches for a few months now. Maybe a touch more energy. That’s not the main reason I’ve stayed on them though.

There’s a hypothesis I find compelling: nicotine competitively displaces spike protein from nicotinic acetylcholine receptors. These receptors are involved in pretty much everything — interneuronal communication, the cholinergic anti-inflammatory pathway, autonomic regulation.

If the mechanism holds, displacing the spike protein puts it back into circulation where the immune system actually has a shot at clearing it.

I’d love to hear your thoughts. Has anyone else done much reading in this area?

Oliveira et al. (2021). A potential interaction between the SARS-CoV-2 spike protein and nicotinic acetylcholine receptors. Biophysical Journal, 120(6), 983–993.

"When they exposed the IgG antibodies from the long-COVID patients to nervous system tissues, they found that it attacked parts of the brain (locus coeruleus (brainstem – principle source of norepinephine, autonomic nervous system regulator, sleep, pain), thalamus (major regulator of sensory information (!), brain fog), meninges (pericytes/endothelium) (poor blood flows associated with reduced waste clearance, blood brain barrier problems, brain fog, headaches, neck stiffness), as well as endocrine tissues (low cortisol?) and a wide array of nervous system proteins."

In another community about the cross over of long COVID, MECFS and Fibro, a couple of people don’t think long COVID should even be a diagnosis. One person said that it’s just a lazy doctor’s diagnosis. What do you think?

Today has been a rough day. I had to decide at the end of it between a shower (which I had been putting off for a couple of days) or making a simple healthy meal. I chose the shower. Do you ever feel like you just want the activities of the day to end? Even taking my pills tonight felt like a huge effort 🙁

It feels like Long COVID, ME/CFS, and Fibro are rarely just one thing. Most of us are collecting secondary diagnoses like trading cards.

Since Reddit won't let me do a multiple-choice poll, let's just do a count in the comments.

Which of these are you battling right now?

Drop a comment with all the ones that apply to you:
POTS (or other dysautonomia / heart rate spikes)
MCAS (histamine issues, random allergic reactions)
Gastroparesis / IBS (severe gut issues)
Small Fiber Neuropathy (burning, tingling pain)
Severe Insomnia / Unrefreshing Sleep

If you have a weird combination or something else that doctors are trying to figure out, list it below. Let's see what the overlap actually looks like in this group.

If you're constantly stuck in a boom-and-bust cycle like I am, the Bateman Horne Center has a free 49-page PDF called the "ME/CFS Crash Survival Guide."
It’s completely free and was put together by medical professionals who actually have these conditions themselves. It covers everything from mapping out your "energy envelope" to setting up your house so you can survive a massive crash without completely burning out.
I’ll put the direct link to the guide in the comments below if you want to save it or read through it.

Anyone else feel like they’ve become a part-time scientist just trying to survive this?

I'm sitting here thinking about how many times I've heard people being told to just "drink more water" or "go for a walk" or the one a doctor gave me… “it’s psychological” to fix multi-system failure.
What is the most ridiculous, insulting thing a medical professional has said to your face since you got sick?

Finding a doctor who actually believes you and understands these conditions is a nightmare. Let's build our own master list of safe, knowledgeable specialists so we can help each other out.
If you have a great doctor, please drop their details in the comments below using this simple format:

Condition: * Country: * State: * City/Region: * Doctor/Clinic Name: * Telemedicine? (Yes/No):

Example:
Condition: ME/CFS and Long COVID
Country: Australia
State: NSW
City/Region: Sydney (Inner West)
Doctor/Clinic Name: Dr. John Smith, Metro Medical Centre
Telemedicine? (Yes/No): Yes

I will keep this post pinned to the top of the group so it's always easy to find. Thank you for helping the rest of us find the care we actually deserve!

In November last year I saw a rheumatologist. I was really sick. I told him I was dizzy, that I couldn’t stand properly. When I got up off his examination table I had to grip the bed for about thirty seconds before I could even walk. He watched that happen. Then he asked me to walk in a straight line.

After more than an hour of examination, his conclusion was that the most likely cause of everything I was experiencing was psychological. Trauma.

I walked out of there without a diagnosis. Without treatment. And I spent another four months getting sicker before I finally got to an infectious disease specialist who diagnosed me with severe POTS and MCAS at our very first appointment.

So I wrote to him. I told him exactly what had happened in that room and what it had cost me. And I made it clear that my reason for writing wasn’t about me — it was about every other Long COVID patient who was going to sit in front of him and get sent home the same way.

His response was pure deflection. Self-congratulation. Not one word acknowledging what I’d actually raised. Not a shred of humility. Not even a flicker of reflection on the fact that he had watched me grip that bed, unable to stand, and still called it psychological.

So I wrote back again. And this is some of what I said:

‘Your response has missed the essence of what I wrote to you. I was sitting in your consulting room, unable to stand without holding onto the examination table, telling you I was dizzy and unsteady — and the only conclusion you reached was a psychological one. As a general physician, not only a rheumatologist, POTS was well within your scope to identify. It is not a difficult diagnosis. The clinical signs were present and observable in your room that day.’

And then I said this:

‘My motivation is not my own experience. It is everyone sitting in rooms like yours right now, being sent away without a diagnosis, without treatment, and without any idea why their body has stopped working. Many of them will not have the background or the resources to work it out for themselves.’

We do not have to accept this. We are allowed to push back. We are allowed to tell these doctors exactly where they got it wrong and what it cost us. We are allowed to be angry. Because that anger — when we use it — might just be the thing that makes the next person sitting in that room get the diagnosis they deserve.

Don’t stay silent. These doctors need to hear from us. 💙

Hey everyone, welcome to the group.
I decided to create this community because, like a lot of you, I'm brand new to Reddit and immediately ran into a brick wall of over-moderation. I watched my own valid, important story about being gaslit by a doctor get instantly deleted, and I've seen so many other people complaining that their helpful posts are getting rejected over minor, complicated rules.

Dealing with a life-altering illness is exhausting enough without having to fight internet gatekeepers just to speak your mind. It really pisses me off how much people try to control everything on here, and I think we deserve a better space.

This group is a shared sanctuary for those of us living with Long COVID, ME/CFS, and Fibromyalgia. We all share so much in common—from our physical daily limitations to the constant battle of trying to get skeptical doctors to take us seriously. For most of us, the medical system failed us, and we had to diagnose ourselves and go hunting for the right medical help on our own.

Because of that, we only have one main rule here: just be kind to one another.

Unlike other groups, you are absolutely allowed—and encouraged—to share resources here. If you found a book, a video, a research paper, a doctor directory, or anything else that genuinely helped you, please post it. We get better resourced by sharing what we learn, not by hoarding it or banning people for trying to help. We are all adults, and I trust everyone here to read the information shared and discern for themselves what is safe and useful for their own body.

You can vent here, you can share your stories about medical gaslighting, and you can share what has helped you without worrying about a robot or a power-tripping moderator deleting your post.

If you feel up to it, drop a comment below to introduce yourself. Tell us a bit about your journey and what you are dealing with. Let's actually support each other and build an open community together.

I find it hard to know what/how to tell someone my limitations. I’m chronically unwell with long COVID. I can’t stand up for very long due to POTS. Have little strength. Very fatigued and need to be really careful what I do so I don’t have a crash. I’m sure similar to most of you.

Tomorrow I have a contractor coming to deliver hay. We have quite a bit of moving panels to do. I can help but need him to understand my limitations. How would you handle this? It will be an ongoing relationship.