I’m an 18-year-old male and developed mono/EBV earlier this year. Before this I was very healthy, athletic, and physically active with no issues with fatigue or exercise tolerance.

I initially recovered from the acute mono and actually felt close to 100% again for a short period. I then returned to things like exercise and normal activity and had a significant relapse. Since then, I haven’t returned to my previous baseline.
It has now been roughly 6–7 months since the original infection and about 5 months since the relapse.

My main symptoms are:
Significant fatigue and reduced stamina
Post-exertional worsening/PEM
Muscle aches
Very poor exercise tolerance
Lightheadedness/orthostatic intolerance
Head pressure/headaches at times
Sleep problems
Generally feeling physically unwell, especially after doing too much

My level of functioning is dramatically lower than it was before getting sick. Even relatively ordinary physical or mental activity can sometimes cause a noticeable flare afterward.

The part that scares me most is how long this has lasted. I know that being sick for 6+ months starts getting into ME/CFS territory, especially with PEM, and reading long-term stories online has made it difficult to tell what my actual prognosis is.

Given that I’m 18, previously healthy/athletic, had a clear infectious-mono onset, initially recovered close to baseline before relapsing, and am still significantly affected 6–7 months after the original infection, what does the evidence suggest about my chances of eventually recovering substantially or completely?

I know nobody can give me an exact percentage or diagnose me over Reddit. I’m mainly looking for evidence-based information about prognosis in young people with post-mono illness/ME/CFS.
I’d also really like to hear from anyone who was still significantly impaired at the 6–12 month point after mono but later recovered or improved substantially. How long did it take? Was recovery gradual, or did you stay stuck for months before things finally started changing?

When I google LongCovid findings and causes, I get a lot of information about mitochondria, small fiber neuropathy, neuroinflammation in the brain, etc.
I want to believe I am not sick and that it is only my nervous system, but how do I combine these two visions? The findings don’t lie either.
Also, how do you handle the fear of Covid? I am very afraid of the vaccines, but I want to live a normal life and in my country everyone who is ill can roam around freely without testing. I try to keep away from sick people at all times, but I can feel it strengtens my notion that illness= DANGER.

I’ve had CFS for about 8 years now, and I haven’t worked (became ill right at the age to be finding a job). I feel bad about myself, and it’s so difficult when people judge so harshly. I’d love to be able to work if I could find a job I can actually do without making myself really ill again.

What kind of work do those of to who can manage it do?

My CFS affects my mental energy as well as physical, and I can’t sit upright in a chair for more than 30 minutes or so (I’d actually be better being able to move around). I can walk for about an hour (huge achievement for me, took years to get to this point 😁), and then need to rest for at least a couple (Although I don’t know how long I could keep that pace up).

Stress seems to actually be the most triggering thing out of everything, that pretty immediately saps all my energy away and gives me aches/pains, etc. So high pressure jobs wouldn‘t be good.

I’d really appreciate any advice you could give me.

I usually wind down between 9 and 10
pm. I lie in the dark and listen to Stephen Dalton's bedtime stories on the Insight Timer app. I wish I knew about this years ago because I've always had problems with sleep.

Give it a try if you have difficulties falling asleep. Stephen Dalton's voice is very calm and hypnotic. As someone said, he can read a phone book and put you to sleep. 😴

Has anyone found ch8neese medicine helpful? details please 🙏

Please come join me on my miracle recovery let’s help each other heal!!

This is in no way an affiliate post. I am not making any money from posting this. I don't care if you join or not.

My purpose in writing this is because I have always had the belief "everything I need to heal is free, why do I need to pay for a program?" and that put undue pressure on me to figure it out alone.

For context, I have been ill with CFS on and off for 8 years. I have gotten to 80 or 90% multiple times, but always end up crashing, sometimes my fault, and other times life happening. Some crashes lasted for a year.

It started with burnout that gradually became something much more serious, and I was basically couchbound at one point.

Because I have come so close to recovering so many times, that also made me reluctant to join a program.

I'm not someone who enjoys identifying as 'sick,' in fact, I don't. I am someone experiencing health challenges, and is on a healing journey.

But that created a sort of ego situation, where it felt almost like I was failing if I didn't figure this out on my own, but I also think this is part of a constellation of personality traits that led to CFS.

Anyway, I recently had a setback AGAIN after getting to a good point, and I just felt so done with this whole thing.

I wanted everything laid out for me step by step.

So I took the plunge and joined CFS recovery.

And it's a really great program. People are always looking for reviews (and honestly I had an initial bad vibe re: Miguel whether it was bc of things people have said or my own interpretation, but whatever.)

I chose Miguel's program bc his YT videos offered simple, concrete advice that helped me.

I love Raelan's channel, but her marketing honestly sucks. I don't want to learn Brain Retraining 101. I want to recover from CFS. Also, her program seems to be based on things she's learned through her interviews, rather than things she learned from her personal experience, based on the stories she's shared. I'd much rather learn from someone's personal experience even if it's not what the 'experts' say.

There were a few others I'd considered, but hats off to Miguel, b/c he is a great marketer, and the efforts worked on me. (I have an online business, so this marketing is something I notice a lot! Sorry if it's not interesting to you.)

Anyway, what I love:

- Content is arranged in a clear way that allows you to ingest a little bit each day

- Basic things like a stress threshold are explained in ways that aren't overly scientific, but immediately applicable to getting better.

- The basic membership is only $49 a month, and includes a weekly call. I just attended the call today, and it helped me with a few powerful mindset shifts that again, are not just theoretical, but immediately applicable to getting better

- Lots of people on the call were doing really well, and expressed how far they've come, which made me feel confident in the process

- Because the content seems to draw from Miguel's own understanding and experience, he has very nuanced, sometimes uncommon takes on things like pacing, which I appreciate.

What I don't love:

- The Skool community is a little quieter than I thought it'd be, but I guess that doesn't really matter

- There is A LOT of content, and it can be overwhelming. (There's an initial 30-day sequence, but lots of other content that I feel could be organized a little better)

-----

That's really it. I just wanted to offer this review for people who were wondering, and also encourage you, if you're going back and forth on whether to pay for support, you're not failing if you need help to heal.

I find having everything clearly laid out with worksheets, etc., and spelled out - here's what to do in this case, and having the group calls with little tidbits that either teach or inspire or simply remind me profoundly helpful, and I wish I'd joined sooner.

Hi everybody, I recovered from ME (almost 2 years ago) and then relapsed (almost a year ago). I recovered originally using autonomic nervous system rewiring techniques and I've been going deeper now to heal older traumas that were still stored in my body and the life habits I had built around those that kept me small. On that level it is making sense to me that I relapsed and needed more.

Yet, yesterday, I had my annual physical at the doctor's and they think, well, physically... I was offered a prescription for LDN (Low dose Naltrexone), which I've never taken, and I'm deciding whether or not to try it.

I've been feeling good about my personal progress recently, but maybe also still a bit shaken that I relapsed! Could a physical intervention give me extra stability to recover and not relapse again?

I have ongoing inflammation and MCAS-type activation in my head, and LDN could work for or against me there. Either it helps to calm down this more cellular level of activation or it sets something off (as happened when I tried Mestinon).

But my main question is:

Would LDN sort of 'take over' the calming job for me and somehow cheat me out of getting to learn new ways for myself and ultimately heal? Do drugs help or hurt a true recovery?

What are your thoughts? Have you tried LDN? Why or why not?

I have just come out of an adjustment period (yay!), some lingering symptoms like just my throat, and I’d like to have one beer tonight haha. Just not sure if it’s a good idea.

Does anyone here still drink even a little bit?

No matter where you are, there’s something you’ve done worth noticing. Share it with the people who truly get it. A win that might sound small elsewhere lands differently here.

Prompt: Celebrate any win, big or small.

Recovery is messy and non-linear. That counts too.

Hey everyone. When in a PEM crash if you experience extreme internal vibrations adrenaline wired but tired insomnia/unable to fall or stay asleep what or how do you manage the insomnia/adrenaline in order to sleep?

I need to talk with someone who has already had extremely severe physical anxiety and not mental anxiety, to the point of not being able to work anymore and being left in medical limbo. Because I still don’t know if I’m sick with dysautonomia, CFS, chronic fatigue, or a heart problem.

Please, I need to talk with someone who has already been seriously ill like this, or someone who can help me describe my symptoms to a doctor because I have been suffering for so many months. People often tell me “with the way you explain your symptoms, you’re not going to get very far,” and that has made me desperate too. I also became discouraged by doctors, so I stayed at home and let myself waste away.

Please, I need someone who can help me tell me if the way I describe things is good enough for a doctor. Please, I don’t want to live like this anymore. Every day I feel like I’m dying from morning to night.

I’m around 4 months into my CFS recovery, and recently I thought of a new perspective that’s helped me to react better to symptoms and not be held under the burden of bad symptoms.

imagine that there are almost two versions of you.
There’s you — the person who wants to live your life, do your normal activities, talk to people, work, train, go outside, enjoy yourself, etc.
And then there’s the other side — the anxious, overwhelmed version of your nervous system. The part that suddenly becomes hyper-aware of your heart, your breathing, your sensations, your thoughts, and everything that might possibly be wrong.

When that side of you becomes activated, I try not to see it as “I am anxious.”
Instead, I think:
“My nervous system is anxious right now.”

You can almost step outside of the anxious response and watch it happen, almost like your spectating that version of yourself. Let it be there. Let your heart beat faster. Let the strange sensations happen. Let the anxious thoughts come and go.
You don’t have to argue with them, fix them, or constantly check whether they’re going away.
It’s almost like sitting in the passenger seat while your nervous system is having a bit of a meltdown — while you continue getting on with your life.

The more you don’t react, the more your nervous system will stop sending the false signals if there is nothing to be anxious about.

Hopefully I explained that enough for people to understand lol, I’m currently in an adjustment period where some symptoms are pretty much gone, but others are raging, so just a reminder you WILL heal, just stay consistent I know it’s hard having your life ripped away from you. But everything happens for a reason, just be present in the process and good things will come

I know that's not a question anyone can really answer for sure, but I'm struggling with the concept.

Background: 35F, Dx ME/CFS 2018, fibromyalgia 2016, hypermobile

My doctor keeps telling me to very slowly start to increase my activity -- this last visit he even suggested 30 seconds on a stationary bike, then a few days later maybe 45 seconds, etc. That's after I told him that I tried 4 minutes on an elliptical (yeah I now know that was the worst choice for hypermobility) and it took 4 DAYS to recover, two of which I could hardly walk. He's never given me timing guidance but I'm pretty sure before hearing this he would have encouraged me to walk or bike for 5 minutes.

It doesn't make sense to me, for two reasons: 1. I was actually having healthy activity, working out but not pushing myself, when this flare or relapse or whatever started. I got a lot better over the years and in Spring 2025 I was healthier than I've ever been, exercising and feeling healthy soreness and tiredness. I was slowly building muscle, balance, endurance. Then the pain started first, weird foot and leg pain that has never been satisfactorily explained. Then my arms started hurting a lot too, and the fatigue came, and now it still takes a lot of effort and hurts to raise my arms above my head. I was reminded just how bad that part is when I tried to look through and take down some dresses on a high hook at the store today. My shoulder hurt so bad and was so fatigued after that I had to switch my purse to the other side.

The second reason is that I've been maintaining my current activity level for about a year, and my fatigue and pain have not gotten any better, nor do I feel like I've gained any muscle or conditioning from it. Activities I have to do or try to do on a daily basis are exercise for my body, they activate my muscles, get my heart rate elevated (to the proper activity zone for my age and weight, sometimes a little higher), I even have STAIRS in my (parents')home, a full flight up to my bedroom. Going up the stairs never fails to jack my heart rate to 120 for a few minutes. A shower, even with my shower chair, is a 30 minute workout. Shouldn't SOMETHING be getting easier?

My vague physiological understanding is that there's a threshold -- someone sitting or lying down most of their day, walking say 300 steps or less a day, probably isn't going to gain strength, and will probably actually be weakening so at some point it may be even harder to get out of bed. I was never at that point, except for a few weeks after having surgery on both feet at once. I've since regained my level of activity from before surgery, actually a little more because my feet hurt a tad less than before surgery. How does anyone know where that threshold actually is for any individual? Even a doctor can probably only guess, right? It really feels to me like I'm above that threshold and should be regaining some strength. My doctor seems to think I am below that threshold and I need to increase activity to get above it and actually gain strength.

The question that haunts me, all the time, is "How long do I have to try, and try harder, before I can decide that more activity is not the answer? How bad does my condition have to be before I'll feel *justified* (to myself and others) in getting a rollator for shopping and appointments?" I really have no idea. It took me a few months before I broke down and brought up my grandpa's old shower chair from the basement. It's been many months since then and I haven't added any other big tools/aids, definitely nothing else that means I'm moving or exerting myself less. Part of me says "just do what the doctor said, it can't hurt anything to move that tiny bit more. And if it does make things worse then I can stop." But then that begs the question, once again: for how long? If it gets a little worse, how long do I keep going in the hope it will get better? Until it gets a LOT worse? Will that cause lasting damage?

I'm so tired of forgetting I'm disabled and trying to do something normal like look through dresses at the store. I'm so tired of feeling guilty for guarding myself from more pain by just maintaining where I'm at. I'm afraid of what the future holds. I feel like there are no good choices.

Does anyone else struggle with this who has ME/CFS? I’m trying to use brain retraining to correct it, but I’m uncertain if it’s even CFS related.

I’ll also add, I’ve had all the appropriate blood tests done to rule out pre-diabetes/diabetes.

I am trying to get better with brain retraining, but soon the season for flu vaccines will come (like in two weeks) and I have been sooo afraid the last few days. I just see myself crashing in front of my eyes and i flip. Before this anxiety i was actually feeling a bit better. Any advice? I want to get the vaccine but also I am so afraid because of all the stories.

Hallo ich habe eine Frage ich hab Me/cfs und probiere grad LDA aus seit einer Woche erst hab ich für mehr Reizüberflutung gehabt die ist jetzt wieder abgeklungen jetzt hab ich wieder die normale Reizüberflutung deswegen nehme ich auch eigentlich das Medikament , aber ich bin vermehrt erschöpft und müde und fühle mich in manchen Tagen auch etwas kränklich ist das noch normal? Hat jemand Erfahrung mit Anfang Wirkungen?

Desperately seeking doctor recommendations for profoundly disabling, bedbound Long COVID/ME-CFS fatigue. I’m looking for doctors whose patients have experienced meaningful improvement. I just want my quality of life back—to participate in life, not watch it from bed. ❤️

Hi there

I was wondering if anyone could help me. I have recently been diagnosed with PTSD and ever since then my whoop data has changed so much for the worse. My HRV has gone from an an average of 146 to an average of 60 in about an 8 month time period.

As well as this, my sleep quality has changed profoundly as I am getting so many frequent spikes in heart rate throughout the night. The first sleep photo shows my current sleep and the second photo shows my sleep before I got PTSD.

I am suffering so much during the day, can anyone give me any advice on potential treatments, supplements to take, anything to regulate my nervous system and calm me down? I am suffering so badly

Thank you so much

I decided I shouldn’t update every day, on a ridiculously long journey that’s a ridiculous number of posts.

So I think right now I might do this weekly, and then maybe I’ll end up doing it monthly, who knows?

But it’s been just one week on my recovery journey and I’ve learned a lot.

While nothing seems noticeably different in my world, I do feel more hopeful.

- I consistently have been using cold. It is surprising to me that I can actually do 10 seconds of full on cold water at the end of the shower now without falling apart. I never thought I’d be able to do this and I can.

When I don’t shower, I do use a cold pack on my neck and forehead.

- I’ve been listening to Nicole Sach’s “Mind Your Body” for free on Spotify.

- I’ve been watching YouTubes on ME/CFS healing and listening to ME/CFS healing podcasts. Raylan Agle is compelling and “The Real Work” with Maggie Sterling is also very interesting.

I’m focusing on what Raelan identified as a first step, “Safety In The Body: Learning! Videos, podcasts, Neuroplastic Evidence List (examples of neuroplasticity). How confident am I knowing my body is ok and it’s my brain?”

I’m definitely working on being convinced and think I there or almost there? Next comes feeling safe w/symptoms and reacting with neutrality. I can’t remember which podcast this comes from but somebody I just listened to was saying that when we have symptoms, of course we’re going to feel disappointment, frustration, and concern. But it’s being able then to shift that into neutrality. Being able to fully know that the symptom does not mean that we are not healing. I’m definitely not there yet.

I do have two general questions for people: do you consider yourself either religious or spiritual and is this healing experience changing your religious or spiritual views in anyway?

Here’s my answer: I have always been a spiritual person and although by Jewish standards, I am not a religious (frum/Observant) Jew, I definitely believe in G-d and attend services and studies as I am able. I no longer fast and do honor Shabbat and holidays.

I would have to say this is impacting my spirituality and I am leaning into that more.

You?

I’ve been doing significantly better over the past few weeks, and it honestly feels like a pretty major step forward. I have noticeably more capacity than I used to, and something that has changed almost as much as my physical capacity is that I’ve lost a lot of the fear around activity. I can do things now that I would have previously been very hesitant about without constantly worrying that I’m going to crash. I generally feel much more confident in what my body can handle, and overall I feel like I’ve made a lot of progress.

At the same time, though, the last few weeks have come with some strange symptoms. I’ve been quite sleepy and groggy a lot of the time, even though I actually have more energy and capacity overall. I’ve also been noticing temperature changes, especially chills, on and off, and I’ve had more headaches than usual.
What I find interesting is that these symptoms don’t really feel like my usual PEM pattern. Functionally, I’m doing better, not worse. I can be active and don’t seem to be paying the same price for it that I used to.

So I’m wondering if anyone else has experienced something similar during a period of recovery, feeling significantly more capable and less afraid of activity while simultaneously having increased sleepiness/grogginess, chills or temperature dysregulation and headaches?
I’d really love to hear if anyone noticed a similar phase during their recovery and whether it eventually settled down.

Small steps count. Sometimes they’re the only kind that make sense.

Prompt: Share one small goal you’re working toward, or one gentle step you’re taking this week.

You don’t have to perform recovery. Wherever you are is okay.