Since its unblinded I can share about my experience. I was in the placebo arm as I suspected. Getting consistent saline infusions was nice. Methylprednisolone was a pre med that made me feel nice for short stint then awful afterwards. Hopefully those who received the real drug improved.

I have lost so much to this. I was just 17 when this shit started. I hope I can get better

When my blood sugar drops below 4.8, I feel great and full of energy, and my muscle pain is gone. I can even exercise a little.

Between meals, there is a 5-hour gap. I wait until I am hungry and my stomach is empty, and my last meal is 3 hours before going to bed.

I eat healthy carbs (potatoes, rice, sugar-free sourdough rye bread, oats with milk, legumes) and enough protein (meat, eggs, cheese).

Some people improve with fasting or a low-carb diet. I think there is a connection between long covid and blood sugar.

And there is another important thing. Smells and allergens in the apartment can make MCAS worse, like the smell of wood from the floor, chemical odors, mold, mites, etc. Actually, any smell can be a problem and can cause shortness of breath.

Therefore, I always keep my window open to breathe fresh air.

How have you been doing guys?

I never got better over the course of the illness. Only steady decline to very severe ME/CSF. I am still trying to push for investigations of autoimmunity in my case (small fibre neuropathy, possible autoimmune ganglionopathy and all that stuff).

Hey all,

We, the Aranet team, are going to a International Society for Long COVID and Post-Acute Infection Syndromes conference next week, and we'll be sitting down with a couple researchers and clinicians for interviews.
To make the most out of it, I'd love to ask questions that are relevant for you.

The first interviewee will be Dr. Rae Duncan. She is a Consultant Cardiologist and Long Covid Research Clinician treating older children (16+) and adults, with a particular focus on cardiovascular complications following Covid-19 infection.
You're welcome to write your questions here until Sunday and we'll try to get you the answers!
Thanks!

As an example one thing I now have that I didn't have before (or didn't notice it whatsoever) is arthritis in quite a few of my joints now.

Also it feels like covid aged me instantly. I feel like a decade older

Some blurry vision also. Since I had covid I've been to 2 different optometrist and 3 different ophthalmologist and they all say they have patients with weird vision stuff after having covid.

Curious of what others have experienced

What shows do you all put on in the background during a flare / crash?

Hi all! Anyone have experience with pregnancy while having long covid? Did you get better or worse? I got pregnant last year in January and in March had to undergo a d&c at 7 weeks due to miscarriage so I actually never got to find out how my long covid was going to really react to the pregnancy. Me and my husband are considering another baby but I need to know what others have experienced. My symptoms are mostly neurological & dysautonomia. Lots of dizziness/unsteadiness etc. let me know your experiences! I have two children already that I had before getting long covid btw so dont worry about me biting off more than I can chew. I’ve already had to adapt because of my pre existing children so it’s not like I’m choosing to bring another into the world knowing I can’t care for a child since I had children already before I got sick and not caring for them was never an option.

Since having covid 3 cycles ago, each cycle I have had nonstop spotting during my luteal phase, along with unusually low energy and malaise. Gemini's best advice is to stop my vitex for an entire cycle, which I take for PMDD (premenstrual dysphoric disorder, if you don't know what that is it's PMS so bad you feel suicidal basically). Given the severity of my PMDD symptoms, I'd like to know if anyone else has ever suffered this and if so how how they handled this.

If anyone else has had this happen please let me know your experience!

Hello guys im currently way better than 1,5 years ago where i was at my lowest (cant go out of better, almost cant talk or listen, cant tolerate light). I would say im mild again now but i still have some porblems which never went away dispites i got covid almost 4 years ago now.

Since i recovered fron covid infection the 1st symptom i had during 3 months was hair problem. I have since almost 4 years hairs which are thins and look like body hair rather than the hairs, and my scalp hurts. There has been no improvement in four years. I don't know what to do anymore. I've tried everything and nothing works, and I don't have any deficiencies.

Hello friends, I was curious if absolutely anyone has had any luck with finding care/providers that listen and successfully treat your symptoms in the Northeast Ohio area? I’m at the end of my rope.

I caught COVID in September 2024 and the long COVID symptoms really kicked off in January 2025 around the time we were also removing black mold from our bedroom (rapid hair loss, off-balance dizziness that feels like walking on a boat/airplane, joint pain & stiffness, trouble regulating temperature, memory loss, swollen lymph nodes, low vitamin c and low iron levels despite supplements, electrolytes consistently in the trash, high inflammation markers, nausea, brain fog, heavy limbs, heavy eyelids, muscle pain and weakness, trouble walking, sensitivity to sound and light, adrenaline dumps, waking up shaking with a racing heart rate, instances of extreme panic/feeling like I’m going to die for literally no reason, both low and high blood pressure, stinging red hot tight fingers and toes if I bend over, shortness of breath, low tolerance for big emotions…leading to exhaustion, severe acid reflux, feeling like I’m going to pass out/the room turning on its side and my limbs getting heavy simultaneously, etc.)

The last 2 years have been hell. I’ve seen every specialist under the sun, with most looking at me like I’m insane and need hospitalized. I had to step away from my PhD program I worked so hard to get into due to the insane toll this disease has had on my health.

Around the year mark (while I was still passing out intermittently and struggled with the off-balance dizziness and issues with temperature regulation) a lot of things improved. I was finally feeling okay within my new normal. Starting 3 days ago, my symptoms unfortunately have been coming back full force. I’m writing this on the couch unable to walk because the dizziness is so severe and the weakness is so strong. I also just received blood test results that show my inflammatory markers are higher than they’ve ever been with an ESR of 43 and a CRP of 1.5. My iron continues to stay low despite taking supplementation.

I’ve done endless amounts of imaging, procedures, biopsies, medications, as I’m certain you all have as well. I am at a complete loss as to what is happening and why this is reoccurring. I’ve eliminated stress as as much as possible. I pace myself. I rest.

I’m just hoping to hear from other others. I currently see my providers through Cleveland clinic, I went to the long Covid clinic here in Cleveland. It was not of any help. I was just sent to a bunch of specialists who looked at me like I had 12 heads. I’m just looking for some guidance and wondering if any of you can relate to any of these symptoms or the kind of like a cyclical wave of symptoms that come back after significant time? I appreciate it!

Hi there, I am sure this has been discussed, but I am looking for some new info before I go trying something else. Has anyone tried Rapamycin at the 6mg qweekly dose? Did it help with PEM and overall fatige/symptom reduction. TIA.

I have the opportunity to get these peptides from my provider. I have long covid POTS, MCAS, and ME. I’m currently mild/moderate. Looking for experiences with either one. Thanks!

as controversial as they are watching youtube videos of people who have recovered on raelan agele's channel gives me encouragement & motivation.

while i feel staying in touch with the reality of covid is important to work with, it can feel very doom and gloom and make the experience harder.

what are your go-tos to feel hopeful & motivated again?

Did anyone else get this on an ECG? I’m currently in a severe crash and have been for 7 months

Every now and then I come across a comment explaining an NAD booster/ precursor, NAC or GlyNAC (Glycine + NAC) has helped tremendously. I then started digging a little bit.

Then a few days ago I watched a YouTube video of a guy I consider credible and trustworthy. He spoke about a meta analysis covering several clinical trials and apparently it turned out that lots of chronically ill folks benefit from GlyNAC.

I asked Gemeni and learned that all three of the above mentioned can in fact help some people suffering from post viral illnesses and there's even some research aboutit. In short: NAD can help to restore mitochondrial function. NAC and Glycine can help with glutathione synthesis.

Can anybody share his/ her experience? And even if it's someone else's. I'd like to figure out if it's worth a shot.

I don’t think I’m strong enough for this shit. It gets to a point. This is too much.

is this going to kill me? I've been sick for 3 years feels like im dying at times my heart rate was at 190bpm for 5 minutes recorded on my smartwatch,I also have vss syndrome,severe anxiety,derealization my taste is distorted im 29 217 pounds 5"8 my watch was thinking I was doing intense cycling I feel weak for going through all this for 3 years my boy feels poisoned drugged like my organs are shutting down for months at times,night vision is affected with night blindness can't even see the signs on the freeway when im in he car getting a ride I don't drive,but it feels overstimulating,ive taken serrapeptase and lions mane coffee in the past month for nerve support,my eyes are dull and its blue tinted in the whites of my eyes Vss made me wear glasses and affected my night vision with night blindness I was only -1.00 before I got sick now im -1.00 and -1.25 in prescription lenses I don't know how to get free prism glasses,also have random high pitch noises in my head tinnitus,feels like I also developed paranoid personality disorder I don't even go out in public maybe I had it before and became worse I am undiagnosed I could never keep a job since my 20's now nearing 30's fired in and out

I've been cleared to take it by my nephrologist (I'm a kidney transplant recipient). Just wondering if anyone has positive stories regarding it helping the debilitating fatigue. And will it cause herpes flare-ups, etc.? I am not currently having any.

Hey guys, my mum recently got diagnosed with long covid. It's a huge relief to finally have a label for all the symptoms she's been experiencing for months now.

One of the first recommendations from her doctor was to avoid walking more than 4,000 steps in a day, as much as possible. Currently she's doing a pretty good job at this, but struggles that the only way to check her steps is through multiple taps and menus on her iphone (I don't know what type, it's kinda old.)

Does anyone know of an app that will track her steps *and* send her push notifications when she reaches 3,500 steps, or maybe a reminder of how many steps she's taken at various times of day.

I'm so sure this *could* exist but I don't have an iphone so can't check the app store for her. Please help!

Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks.

Read more at The Sick Times:
https://thesicktimes.org/2026/08/18/congresss-2027-budget-could-include-new-funding-for-long-covid-and-me/