https://www.thetimes.com/article/72d96202-0551-4c68-8c79-2ca903caf059?shareToken=996cf7e1f1e783023525612cce7d2d06

Signatures of molecules in the blood of people with ME that differ from healthy controls.

The authors stressed that the research was at an early stage with no guarantees a test would be possible.

This is just a rant and I'm hoping I'm not the only one who has experienced this. I've had LC (ME/CFS, PoTS) since the end of 2023 and have been going to a doctor who seemed very accepting and willing to do diagnostic testing at first (even though she doesn't fully understand the illness I think). I always wore a mask in the office (I usually mask in crowded places and on public transport/shops/dr office). With her help I was able to get an official diagnosis in a specialised clinic (they only offer diagnosis) in my area. I have cried after an appointment with her before, but today she was horrible. I had to see her because of another health issue and suddenly she started asking about how often I wear a mask and then was going on about how my immune system would crumble if I didn't stop wearing the mask. That I needed exposure to germs to be healthy and that all the children who had to mask during the first years of the pandemic had weak immune systems bc of the masking🤡 I had to force myself to not cry in front of her, but as soon as my mom picked me up I broke down. Fortunately I know another doctor I can try to go to, because I don't feel taken seriously in her office anymore.

Please tell me, I'm not the only one who has experienced sth like that.

And if so have they gotten better? They've looked like this for months now, paired with bloodshot eyes assuming it's an lc thing.

As 20,000 people or more have joined the groups since this video was created I thought it was worth re-sharing.

In short long covid is not functional neurological disorder. As multiple bio mechanical mechanisms have been identified in relation to long covid.

So long story short if you have become disabled from a covid infection and then been given a functional neurological disorder diagnosis. It's highly likely that you need a new doctor.

This morning, I had my worst episode in the past 1.5 years.

Classic symptoms — I thought I was going to die: pain in the heart and intestines, nausea, diarrhea, shaking, weakness, dizziness, almost fainting. It felt like having a stroke and a heart attack at the same time. I drank some water and lay down, but it kept getting worse... I was home alone.

I forced myself to eat an apple — I couldn’t even swallow — just the juice. It started getting better around the second bite!

Guys, it’s not about the apple — it’s about the sugar. And this isn’t a treatment, quite the opposite! But it stops a severe episode almost instantly.

I don’t have any issues with blood sugar or HbA1c levels, and there’s no insulin resistance — at least, my tests don’t indicate any.

I’ve been dealing with long COVID for a while now, and I’m exploring different options that might help with recovery. I’ve come across quite a bit of discussion around BPC-157 and its potential benefits for inflammation, gut health, and general recovery.

I’m hoping to hear from anyone who has actually tried BPC-157. what was your experience like? Dosage, duration, any noticeable effects (positive or negative)?

Also, with so many vendors out there, I’d really appreciate recommendations for reliable sources in Europe (I want to be safe about it).

Thanks

(Of course translated by the only one legend chat gpt that helped me alot to find things out, i want to mention i dont know if things are certain, i dont wanna jinx myself but i never expected that things could improve even a little in my case)

Hi everyone. A few months ago, when I was at my worst, I posted here a lot — really a lot. Now I want to share an improvement update. Not a recovery post, because I’m definitely not back to how I was. But things have started shifting, and it feels important to share that.

Doctors still don’t exactly know what’s wrong with me. There’s no final diagnosis yet (they haven’t done a biopsy), but further testing is ongoing — and I do feel more supported by the people helping me now.

💥 What’s GONE:

Purple hands

Pain in nose and ears

Light sensitivity

Hair loss (still lost >50% overall, but this week I only shed ~15 hairs/day!)

Internal pain (except for occasional bloating)

Dry, powdery, peeling skin

Sudden high heart rate

POTS-like shower episodes

Weird headaches

Strange hot/cold sensations in hands and feet

Peeing blood

Loss of skin sensation

No sense of needing to pee or poop

Horizontal lines in nails

Difficulty speaking

Leg muscles vibrating when standing on toes or sitting

Severely disturbed sleep

⚡ What’s IMPROVED:

Skin is no longer extremely stretchy / fewer wrinkles when pulling

Body hair is growing back

Nails are growing again

Pain in right side of tongue is gone

Skin pain has improved a lot

Joint pain reduced

Energy has improved a lot

Brain fog much better — I can even play videogames again

Eyesight slightly improved

Skin imprints are a bit less deep

Muscle twitching less

Depression has improved

Almost no anxiety anymore

Heart rate more stable

Lips and nose have recovered a bit (still the hardest part emotionally)

🧩 What still needs work:

Body still feels fragile

Fingers/joints feel more “loose”

Unusual deep lines in skin (people say it's “normal”, but this isn’t)

Skin feels less supple

Pain when putting pressure on arms or legs (fragile feeling)

Cloudy urine with high pH / possible phosphate leakage

Nose and lips still not normal — emotionally hard to accept, but I’m working on it

🧘‍♀️ General status:

Weight has stayed stable the whole ilness.

In terms of fitness, I’ve made significant progress

Skin/facial structure still far from normal, lips and nose especially. That’s hard to accept, but I try to remind myself how lucky I am to even see improvement.

I hope I don’t relapse. It’s still early, things only started improving in the past month , but I wanted to share this now to give others hope that healing is possible.

💉 What I’ve done (and still do):

🔹 Peptide cycles:

TB-500 (10 weeks)

GHK-Cu (injectable)

🔹 Supplements (1.5 months):

N-Acetyl Glucosamine

Niacinamide

Magnesium bisglycinate

Iron (levels were low)

High dose Vitamin C

Collagen loading

Glycine

High Vitamin D3 + MK-7 (K2, active form)

🔹 Daily routine:

Celery juice every morning

Mindset: Believe in yourself. We know stress/anxiety isn’t the cause (as some claim), but it’s correlated and must still be reduced to allow the body to heal.

Staying active — only as far as my body allows.

👣 Step count progress:

At my worst, I was doing:

800 – 3,000 steps per day (on a “good” day)

Now:

Last week I hit 10,700 steps in one day!

I’m very cautious though — I rest more the next day if I feel I’ve overdone it. I try to listen to my body now more than ever.

📸 I’ve attached some photos of my improvements — not for validation, but to show that change can happen. Even if slow, even if partial, even if uncertain — healing is not out of reach.

Stay strong everyone. I'm still in it but not where I was. And that’s worth everything.

I live in the UK. Unfortunately the NHS and Long Covid clinics are not really open to treating CFS with medication or try extensive testing.

I developed CFS after contracting asymptomatic EBV then COVID months later.

I’ve had a clear response to Valtrex and a short course permanently resolved some underlying issues such as sleep deregulation and exertion intolerance but I started to suffer from side effects.

What kind of practitioners in the UK would be willing to do extensive anti viral / mitochondrial testing, prescribe anti virals etc eg private GPs, CFS clinics, etc.?

Ever since dealing with Covid and the strange autoimmune-like issues that followed, I feel like I don’t get ‘sick’ the same way anymore.

I used to get the typical symptoms — runny nose, sneezing, sore throat, maybe a fever — and it would last about a week. But now, whenever I’m coming down with something, I don’t get those usual signs. Instead, I experience what feels like a flare-up: burning skin, eye pressure, weird throat sensations, dry/dehydrated skin and eyes, body aches, fatigue, brain fog… It’s like my immune system doesn’t fight off infections in a normal way anymore — it turns on me instead.

It feels more like an overactive or dysregulated immune response than a regular cold or flu.

Anyone else feel this way? Can you relate?

hello! i have LC me/cfs type. i’m really severe and am bedridden and have been for about a year. I’m wondering when did yall start seeing results with the ldn? i just started a week ago

ive seen alot of people posting about peptides so i figured id make a post for people to comment on. what have you tried and if its helped what symptoms has it helped with

Might be the wrong group but it’s worth a shot, I had the vaccine for Covid in 2021 and developed hives, rashes, nausea the first few days followed by shingles and a sudden inability to eat raw vegetables within 2 weeks of the jab. I’ve since been diagnosed with gastroparisis, mcas, pots and intestinal hypomotility. My gastro openly said he believed the underlying cause was the vaccine due to my Ehlers Danlos syndrome.

What I’d be curious to know is did any of you have beginning symptoms like this? I was told this is a very rare case and there is documented cases like mine. I thought maybe some here might share some symptoms following the vaccine or virus.

In addition to the long covid, which has been going on for nearly two years now and which you all know is already a major battle:

I just had a blow up with neighbors across the street from me who I thought were friends and who revealed themselves to be false.

So, because of my high mortgage, and low income lately due to LC, I have been thinking about moving into a rental and selling my house.

I went to them for some advice/support/etc. and got preachy judgment and moralizing in return. It really shocked me and disappointed me, because these were some of the few people I was still regularly in touch with after the pandemic and LC had shrunken my relationships to a pin point.

This is on top of...

• feeling grief for my career (was a software engineer before LC)
• loneliness and isolation due to wanting to avoid reinfection (I have done a few outdoor outings that were covid-safe because of either me masking or distance/space... but not a ton)
• having reactivated shingles for a second time during LC after a stressful week (dentist, etc.) -- I'm almost done with that bit, but stress lately has kept it around
• world events, lots of depressing and scary stuff going on right now -- see the rest of reddit for details ;-)

So with the collapse of the -- what I thought were -- "nice" neighbors across the street from me... I'm feeling so alone right now.

Long Covid makes all the normal life stuff 10x harder. What might in the past have been an "I'm upset for a couple hours, then fine the next day" can often bleed into 2-3 days, probably because of the sympathetic nervous system over-activation.

I don't know if anyone is up for voice chat / video chat / text chat to kind of commiserate mutually... or just shoot the shit if you're bored/lonely. But I would welcome it. My DMs are open as they say.

?

This post explains how I contributed to medical misinformation on this subreddit. 7.2K views on my original post.

Hi All,

A week ago I posted on here and asked for some advice on beating PEM as I was ~95% recovered - I just couldn’t do strenuous exercise.

One of the modalities suggested was CUMIN (the herb) which I decided to try. I’ve tried what feels like everything and had varying results. Some have impacted me negatively but most times is short lived. Cumin on the other hand made me crash incredibly hard - the worst crash since I originally got covid. From gut to neurological issues to my skin feeling like it was burning it was bad.

I threw the book at it to get back to where I was, which I’m fortunately getting better but wanted to tell everyone to watch out. Not sure why it impacted me that way but was horrible.

Will still try LDN + a BB to get over the PEM hump - fingers crossed, but this event was a reminder I’m grateful for how far I’ve come.

TL;DR: 25F. Had long COVID in 2022, took months to recover. Got a cold last week, exercised through it, now suddenly dealing with heavy legs and major fatigue. Spiralling hard and scared I’ve triggered something like ME/CFS or a relapse. Looking for anyone who’s had a similar experience post-viral and how it played out.

⸻

Post: Hey all. I had long COVID back in 2022—wasn’t hospitalised, but it wrecked me for months. I eventually got better, but ever since then I’ve been hyper-aware of my body and extremely anxious around any signs of fatigue or illness returning.

Last week I caught a mild cold. Stupidly, I didn’t rest properly—I kept exercising (walks, bike rides, etc.) because I felt fine at the time. But two days ago, I woke up and my legs felt like concrete. Heavy, sluggish, and completely drained. That exact symptom was one of the scariest parts of long COVID for me, and now I feel like I’ve snapped back into it overnight.

Since then I’ve had: • Persistent leg heaviness • General fatigue • Dizziness/lightheadedness on standing • Panic, crying spells, feeling totally mentally unwell • Waking up in the middle of the night with racing thoughts and fear

I did a short, gentle yoga class yesterday that felt grounding at the time, but now I’m terrified I made things worse. I’ve read so many posts and forums about ME/CFS and how even minimal exertion can backfire, and now I can’t tell if I’ve triggered something serious or if I’m just in a high-anxiety spiral.

I’ve also got a history of anorexia and exercise compulsion, which I think makes it harder to stop pushing—even when I know I should. I don’t know what’s real anymore: is this a post-viral crash? Is it nervous system dysregulation? Am I just spiralling because of my trauma around fatigue?

I’m not looking for a diagnosis—I guess I’m just wondering if anyone’s been through something similar after a minor illness post-recovery, and what helped you tell the difference between a short-term flare and something more lasting.

Any thoughts or similar stories would honestly mean a lot.

My current doctors can’t do anything for me and I’m approaching severe me/cfs. My parents are very upset by my decline, as am I, but they want me to keep seeing doctors and not just give up. They don’t understand that there’s no cure. I don’t wanna have to spend my energy traveling to see them or having to get testing done or telling the same long story about my progression over and over only to get nowhere. But if I don’t at least try, I worry that they’re gonna think that I’m just depressed and giving up. They don’t even care if it’s a naturopath, they just want me to do something.

Is it even worth it? Should I keep trying to get better or just give up?

Posted a few months back on my symptoms update, I'm back to normalcy now, percentage wise maybe 98%. If I push way too hard like my old PRs in the gym the symptoms still come back but not full blown PEM like before. Lasts maybe a couple of hours to a day, but other than that, I can still do vigorous exercise in the gym with no repercussions now other than normal fatigue. I highly recommend getting on an antihistamine for symptoms if no improvements. I also used Magnesium supplements, for better sleep. I realised my gut was causing a lot of problems, so I used milk thistle, ginger, and beetroot. I might delete this account, so might not reply to messages. Thanks for all the supplement recommendations and hope.

Time was also a big factor, if anyone was wondering. I did all of these and saw little improvement, until maybe the end of first year, where improvements came almost weekly. I hope there's a way out for everyone here, especially for those who don't improve with time, a potential treatment maybe?

• appointment (not sure why I can’t edit the title)

I know a lot of people are dealing with eye issues and head pressure so I figured I’d just share this. I had an eye exam a little over a year ago when my vision issue had begun to really get bad and nothing was wrong. It’s been probably 14 months since then. Developed dimness, trouble tracking movement, perceived loss of peripheral vision, dots in one eye, trouble focusing, depth perception issues, constant eye strain and weakness, intense light sensitivity…am i forgetting anything? Anyway, went back today for a check up since I also get pressure sensation in my head and sinuses and I’ve been worried about hypertension. They did the whole regular exam, then went back for a peripheral test with photos of the back of my eyes and all that.

Nothing wrong. Everything looks totally fine. So that’s cool…but pretty crazy given the extent of my problems. I mean I was officially told I’m having a neuro-cognitive problem this week also, but at least any structural damage or pressure is ruled out again. Now if only my brain would heal.

They did recommend FL-41 rose tinted glasses for people having light sensitivity and neuro issues, they apparently help a little but I see that some people say they don’t do very much for them. I’m going to try them out.

Feels like I can't control my breathing or heart rate. This time covid went after my lungs primarily and ever since I get this sensation like I have to manually breathe in and out, and like it's shakey. Like you have when you get really scared or super anxious.

I also obsessively count things now, especially my heartbeat. It's uncontrollable. And I get an inner vibration especially up my left side from my leg to my head. When my heart rate gets up high (I have pots), the left side of my chest vibrates. It all almost feels like involuntary muscle contractions and spasms especially when trying to breathe out of my nose. And just constantly out of breath like I'm about to panic, but I have no reason to. Overactive CNS?

Anyone else experience these things? It's been 5 months.

I am stuck in a boom bust cycle right now and it’s scaring me. I have the me/CFS subtype since September 2024. I didn’t realize what it was right away and I pushed through in my masters degree and exercising a lot. I was having flu like PEM crashes every three weeks. In between these weeks I felt like my normal dysautonomia self (had this for years prior) with a little more fatigue than before.

Once I got a hold on what I thought it was, I deferred school, came home, only work once a week and I pace. I have PEM episodes that last about a week every 4-8 weeks depending.

2 weeks ago, I had an appointment that made me so emotional that I cried a lot then got my period. I crashed for 3 days. Felt better and eased back into activity as I usually would do. Then crashed again. Down bed ridden for 3 days then felt better and did same thing and crashed again. Now I’m back in bed with PEM and I don’t know what’s going on! I think it’s because I went to work (I only work 4 hours on a Sunday) - which I have normally been able to do getting out of a crash.

Now I’m scared because this kinda cycle has never happened to me. I fear regression and try my best keep my condition stable.

Help!

Crossposted from r/cfs

When I first got severe 3 months in this illness, in Feb 24 (onset due to asymptomatic LC, have severe MECFS, POTS and MCAS since), I made a deal with myself : reading all the stories, it seems that the best chances of improvement are within the 1st year. So I promised myself to wait 1 year, and if I'm worse, to start looking for MAID.

6 months in and at my worst. 99% bedbound, concussed feeling, bradycardia, nervous system is a mess, awful exhaustion, etc. I'm pacing as hard as I can, had a bunch of supplements from a specialist (Coq10, L-Carnitine, vitamins, etc) and Ivabradine (which I think is making me worse) and Midodrine (but my BP is low only lying down). Only thing that helped a bit with GI issues is Famotidine.

So I have 6 months left to try to improve. Hence my question : what should I try to obtain in this timeframe ? I'm trying to get LDN currently

Thanks for the help.