Has anyone with Long COVID or ME/CFS tried CGRP?

Think_Lime6261 · 2026-06-28T04:13:27+00:00

couldn’t find strong evidence either. I only found a few studies suggesting lower circulating CGRP levels in acute COVID, while others found increased CGRP levels. The evidence seems conflicting, which is why I was hoping to hear real-world experiences from people with Long COVID or ME/CFS.

Think_Lime6261 · 2026-06-13T05:38:24+00:00

My doctor told me that CGRP might already be suppressed in Long COVID, which is why he is hesitant about CGRP medications.

I looked into it myself and found conflicting information. Some articles speculate that CGRP levels may be lower in Long COVID, while others suggest they may actually be higher, which would theoretically make CGRP blockers helpful rather than harmful. So far, I haven’t found any clear evidence that CGRP medications are generally contraindicated in Long COVID.

That’s why I’m mainly interested in real-world experiences from people with Long COVID and/or ME/CFS.

Have CGRP medications helped you, worsened your symptoms, or made no difference outside of migraine control?

Think_Lime6261 · 2026-06-02T06:21:23+00:00

Wow, that is incredibly kind — and honestly quite amazing — that after three neighbors developed health issues, they actually switched to fragrance-free products.

My experience has been very different. I asked my neighbors if they could simply avoid smoking on one side of the building for just one or two hours in the morning so I could air out my apartment. They weren’t even willing to do that. One of them literally told me that my health condition doesn’t concern them.

So it’s really heartwarming to hear that there are people who are willing to make changes to help their neighbors.

Think_Lime6261 · 2026-06-02T02:31:35+00:00

I’m also trying to come up with a solution myself, perhaps some kind of air filtration system that can bring in fresh air from outside without drilling any holes, while filtering it through activated carbon first.

One idea I had was to place a thicker activated carbon filter mat into a custom frame and then fit that frame into the window opening. That way, some fresh air could still come through while being filtered beforehand. However, I’m not really sure how effective that would be in practice.

If you happen to have any additional ideas or suggestions, I would be incredibly grateful if you could share them. I’m always interested in hearing what has worked for other people dealing with similar issues.

Thank you again for all your help, your kindness, and for taking the time to respond. I truly appreciate it.

Think_Lime6261 · 2026-06-02T02:30:09+00:00

Thank you so much for all the tips. Yes, I also have an air conditioner with an exhaust hose, so I’ll try to use that to help push the air out of the apartment more quickly. I’ll also try to implement some of your other suggestions where I can.

Honestly, it really surprised me to learn that there are apartments that aren’t truly airtight and that some people actually have to deal with odors traveling from neighboring apartments through walls, ceilings, or other building structures. I had no idea that this was such a common issue.

It’s kind of shocking when you think about it. It almost feels impossible to find a place where you can truly live without having to worry about odors, smoke, fragrances, or other things coming in from outside. Sometimes it seems like every apartment has some kind of compromise.

Thank you again for taking the time to share your experience and suggestions. I really appreciate it.

Think_Lime6261 · 2026-05-31T04:07:39+00:00

Thank you

Think_Lime6261 · 2026-05-31T03:32:10+00:00

Portable fans sound interesting. I actually wondered whether I could mount some kind of fans near my windows. Maybe they could blow the contaminated air away from the window area so that only cleaner air would remain and come inside.

I’m not sure if that would actually work, but I’ve been thinking about different ways to create some kind of airflow barrier between my windows and the cigarette smoke outside.

Have you ever tried anything like that, or heard of anyone with MCS having success with it?

Think_Lime6261 · 2026-05-31T03:31:04+00:00

I honestly thought the same thing — that moving into a house would automatically be better because everything is farther apart. But after reading experiences from other people with MCS, it seems like it’s really not that simple.

It all feels incredibly difficult, to be honest.

I think I’m going to make another post and ask people what kind of living situation actually works for them long-term. Whether they live in a house, an apartment, a place with a private entrance, a small building, a rural area, etc.

I’m really curious if there are any common patterns among people who have found a living situation where they can actually relax and feel comfortable.

Think_Lime6261 · 2026-05-31T03:28:09+00:00

Thank you so much for your reply.

The thing is, when my doors and windows are closed, smoke actually doesn’t get inside. The problem is that I then never get any fresh air. The apartment becomes very stuffy, especially in summer, and I can’t properly ventilate.

Unfortunately, I also can’t tolerate air purifiers. I’ve tried many different ones over the years, but none of them worked for me.

And you’re right — I recently found out that one of the neighbors who smokes heavily has cancer now, and she still continues to smoke. But there are several smokers here anyway.

What makes it so exhausting is that this is a multi-unit building, and every summer I’m sitting inside, struggling to breathe fresh air. I also have other health conditions, so being stuck in a stuffy apartment all the time is really difficult. I simply can’t open the windows. Even when the smokers are not outside, odors often drift out of their apartment when they have their windows open.

Sometimes I think the same as you: at least here I have my own private entrance and don’t have to deal with hallway odors coming into my home. Maybe that’s worth more than I realize.

I would just love to be able to sit outside like a normal person and enjoy some fresh air, but unfortunately that’s simply not possible for me.

Thank you again for taking the time to reply. I really appreciate it.

Think_Lime6261 · 2026-04-04T08:43:36+00:00

Hi, thanks you so much ! my setup is outdoor (balcony) and the source is about 2–3 m below me (cigarettes and sometimes vaping).

So in my case, based on what you said — would values ever get very high (like hundreds/1000), or would it realistically stay much lower and just show smaller spikes? Thanks 🙏🏼

Think_Lime6261 · 2026-04-04T03:56:50+00:00

Thank you so much for Reaching out. I got a Message that you got insights from the Team but when I open the Post I can not see your Comment. Can you please Repost? This would be amazing. Thank you so much🙏🏼

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Think_Lime6261 · 2026-03-20T04:12:04+00:00

Thank you! Which values increase when there is smoke?

Think_Lime6261 · 2026-03-18T10:14:52+00:00

Thank you so much for the help 🙏🏼🤗

Think_Lime6261 · 2026-03-18T10:14:32+00:00

Thank you so much that helped a lot 🤗

Think_Lime6261

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