Mine was to sprinkle holy water over me lol. I wasn’t even mad, it was too hilarious

TL;DR: Full recovery may be uncommon, but we don’t have enough evidence to claim it’s impossible or that everyone who recovers was misdiagnosed. ME/CFS research is severely underfunded, and we still have so much to learn. We can acknowledge how devastating this illness is without dismissing recovery stories or treating the prognosis as predetermined.

One thing that’s been frustrating to me in both r/cfs and r/mecfs is how discussions about recovery can fall into two extremes.

On one side, there are people who believe everyone can recover and all symptoms are reversible. On the other, there are people who believe recovery is impossible and that anyone who claims to have recovered must have been misdiagnosed or never had ME/CFS to begin with.

I recently commented on a post in this sub saying that I don’t think we should automatically assume everyone who reports recovering is lying, and I clarified that I wasn’t defending unproven treatments. I got a couple of downvotes, which honestly felt unfair when I was trying to express a pretty moderate position. It made me wonder whether there’s enough room in these communities to acknowledge uncertainty without being interpreted as minimizing the illness.

I don’t think the current evidence supports either extreme. ME/CFS research is severely underfunded relative to the disease burden, and there are enormous gaps in our understanding of its underlying mechanisms and long-term prognosis. Recovery rates haven’t been well established. Some people recover, others improve but retain symptoms and limitations, and others remain ill or worsen. We simply don’t know enough to make definitive claims about every patient’s outcome.

Claims that everyone can completely reverse their symptoms can create false hope, unrealistic expectations, and feelings of failure when recovery doesn’t happen. But insisting that recovery is impossible or dismissing everyone who reports recovering reinforces hopelessness without sufficient evidence to justify that certainty.

Medical history has shown that diseases once considered incurable can become treatable or even curable as research advances. That doesn’t guarantee the same outcome for ME/CFS, but it’s a reminder that our current understanding isn’t necessarily the final word.

I understand why people with ME/CFS are skeptical of recovery claims. Patients have a long history of being dismissed, blamed for their symptoms, and sold false promises. That skepticism is justified, but I don’t think it should mean automatically assuming that everyone who reports recovering is lying.

We can acknowledge how serious, disabling, and potentially lifelong this disease is without ruling out the possibility of recovery. I wish there were more room for good-faith discussion of this uncertainty, rather than treating any suggestion that recovery is possible as minimizing the illness.

We deserve honesty about what we know and what we don’t, without false promises on one end or absolute hopelessness on the other. Above all, we deserve far more investment in research so we can move beyond speculation and start getting meaningful answers.

Ldn group did not differ in fatigue nor pain after 16 weeks compared to placebo in long covid

How do you spend your weeks?

Is there a dissociation from the world when you do go out? Like wow all these people exist and live “normally”?
Or do you just feel so safe being at home and can’t wait to get back?

I feel like the way I described it doesn’t make sense but it’s the best I can do right now.

Dear lovely friends!

If you have energy and would like to, please sign this petition for the Hungarian ME/CFS community. We’re asking for better healthcare. Right now there isn’t a doctor in the whole country who understands this illness and is willing to help us.

https://szabad.ahang.hu/petitions/az-me-cfs-ben-szenvedo-betegek-helyzete-magyarorszagon

You just need to click on “ALÁÍRÁS” then give your forename, lastname, e-mail address and postcode, click on the “Nem, köszönöm” and finally on the red sign “ALÁÍRÁS”.

This would mean a lot to us if you could help! 💙💙💙 Thank you so much!

Does anyone else relate? I am so weak, so exhausted, struggling day to day. It’s like I’ve been drained. Obviously I’m not trying to say ME/CFS is literally a vampire, but it certainly feels like it sometime.

They seem to think I just like laying in my bed all day. They keep urging me to see my doctor and seek out treatments, but I don’t want to risk my already low baseline by trying medications that will likely harm more than help. I’ve already deteriorated from the meds I’ve tried recently. I’m done seeking answers because I’ve accepted that we’re in the dark ages of medicine in terms of understanding and treating the illness, and there won’t be a treatment in time to stop my inevitable decline into extremely severe.

They think I’m giving up, while I see it as being realistic about my options and how my life will end. I know that they don’t want to accept that. My problem is that they keep saying “Well, if you say you want to recover, staying in bed all day alone is only gonna make you worse.” And you know what, I can’t even argue that rest will make me better because it hasn’t. There’s no guarantee it will. So I don’t even have anything to argue, so I just keep saying that I’m gonna get worse no matter what, because that seems to be what’s happening. And to that they say “Well then what do you have to lose?”

Idk anymore. I’m carrying the burden of the knowledge that I have a degenerative illness completely alone. Nobody can help me, and I don’t wanna waste more time and energy doing shit just for the sake of my parents so that they don’t feel guilty for being “complicit” in my suffering. I know it must be hard for them to interact with judgmental people who probably think they’re enabling me. I understand how isolating it is for all of us but I wish they didn’t take it out on me.

I just heard someone dear to me say that a family member "claimed that" they had fatique and dizziness after COVID in 2022. He is now very sick and they have called his problems autoimmune which in all fairness to him sounds much more scientifically plausible, as opposed to the "CFS" thing. I'd love to share a good 2026 readable article about ME/CFS that is legit. Ideas welcomed!

so Ive noticed that with cfs, there's 3 groups: people who can't seem to stop losing weight (even when packing on calories), people whose weight stays somewhat predictable, and people who keep gaining weight (even when eating very few calories).

has their been any research on what this means for the different subtypes? because there are obviously different things going on to cause each phenotype. I was hoping this could help guide which treatments to consider?

I’ve been mild for several years and had my big crash in Feb 2026, I’ve been bedbound since and have progressively declined to very severe with extreme/profound crashes. I have moved in with my parents so they can take care of me. I miss my kids and husband and life terribly.

In constant hellish suffering. My kids cry for me and I can barely talk to them when they come to visit. I can’t even wash my own face or get to the bathroom and I’m 29.

I’ve always had a very sensitive nervous system so I’m afraid I have no chance of recovery or even improvement. Any mothers who have improved? Will life ever be okay again?

I recently started chatting with people from a local ME group, and after talking to 7–8 people, I realized that I seem to get PEM waay more easily, and the consequences are much worse ( I don’t recover).

The things they’re able to do are things I couldn’t even do when I was way milder. Of course, they struggle a lot and it sucks, but they seem to be able to remain mild or moderate. Meanwhile, I experienced catastrophic crashes from much less activity, even when I was still mild or mild-moderate.

I’m just trying to understand what’s going on. Has anyone else had a similar experience? Is it up to different subtypes?

I just end up writing really sad/depressing things that always comes up even when i try to do happier things. Its really embarassing and used to be a lot worse when i was younger and not on any meds. I want to connect with people but i feel ill about how sad it is.

I dont know, it makes me feel like i cant connect with people through art because of how much it makes me upset (also also not wanting to make anyone else feel that way)

Did this happen to anyone else?

For those with ME/CFS who have been diagnosed with a gut motility problem, what symptoms did you notice, and how did you find out what was going on?

My last post here was pretty pessimistic, so I wanted to ask something a bit more positive. I have a partner who has been incredibly supportive. We live together, and they absolutely stepped up to pick up my slack in the chore and house upkeep area. However, our usual activities together are most often athletic things with groups. She still goes, which I am glad for, even if I cannot.

So my ask is, in what ways have you been able to offer support to your partners, while managing symptoms? I try my best to express gratitude, but I'm looking for solutions for the long haul, and sometimes thanks isn't enough to sustain when capacity is so imbalanced between partners.

This is a crazy question, but has anyone found ways to make art through fatigue? What kind of media did you use?

I have recovered somewhat and I'm really bored. I've tried digital art but I'm tired of staring at a screen.

TLDR; I first got sick two years ago. That is when she broke up with me because I got boring, needed therapy, and was keeping myself sick. I feel like I have an emotional attachment to her, but also to the life I had with someone while I was healthy. I was with her for three years. I can't get over her. And it's been two years. I mourn the life I lost with her and the life I had with her. I don't think I can get over her ever. She was the definition of a dream girl in every respect.

END OF TLDR

Hey guys, so about two years ago I got severely sick. I was in a relationship with a beautiful girl for three years at the time. She was the definition of my dream girl. A girl who liked to do pretty much every activity I did. She was active and basically a model. She was stunning. And honestly, she still is. But what I miss most is the fact that we did everything together. We made so many memories together. We would come back from work and go out or have dinner together or do something. We were never bored. And we never did nothing. It was a very healthy relationship. Up until the point where I got sick.

When I got sick, she started telling me that this was all in my head. That this was me letting myself get sick and letting the sickness control me. She told me to go to therapy and take medication for depression and anxiety. About one month into me being sick, she dumped me out right. Told me I have mental health issues and was letting a false sickness control my life and making myself miserable. I was with this girl for three years. We did so much together, and I was with her when I was at my healthiest self.

It's been two years, and I still can't get over her. I dream about her every single night. And that is not an exaggeration. I loved this girl in so many ways. And frankly, I still do love her. But I know she doesn't care about me. However, I think part of the reason I can't get over her is that she was the last good thing that was in my life before my entire life got screwed over. So I have this emotional attachment to her but also this attachment to who I was when i was healthy. And when I picture myself as a healthy person, I picture her. A future. Love. Peace. I know I will never be healthy again. She is the last memory I had of being healthy.

I genunaly have tried therapy; I've tried finding a new girlfriend. I've tried a lot of things that help normal, healthy people get over a relationship. But frankly, I seem to not be able to get over this. No matter how hard I try. It feels like I am doomed. No other woman is attractive to me unless they resemble her in both a physical and emotional way.

Plus, I won't ever be able to find someone that is like her because the girls that are like her are in the mountains, at shooting ranges, at bars, on motorcycles, at beaches, on trails, out and about. And I'm in four corners, in a house I'll forever be in. It almost feels like no one will be able to compare to her, and no one will be able to distract me from the feelings I have for my ex still. I feel like being sick with ME has really prevented me from getting over her.

My best friend is over his ex. They were together for 7 years. And he already has a new girlfriend a year later. He's happy and looking forward to life.

Me... I've got nothing. No future. Not looking forward to anything. I have nothing to really live for. I feel like ME has basically rewired my brain to have absolutely no positivity, or happiness, or pleasure, or curiosity, or care for anything anymore.

Does anyone else relate?

hi!! I'm mostly bedbound, can only sit a few hours a day rn and thats a good day. Here's the thing. i used to LIVE for making art like thats what kept me alive lowkey. Now i'm so sick with ME and MCAS i cant really do that anymore. Like painting and all that is so hard! Especially because of the cleaning up (otherwise my cat will devour any paint or brushes they will find lol).

How do you make art? What mediums? How long? How do you store it? Do you idk listen to music or something while at it?? So many questions.

I just really really miss making art.

Saw this elsewhere and wanted to pass it along in the spirit of creating international community!

We created a WhatsApp group for Malaysians with ME:

https://chat.whatsapp.com/BY4lLd7FQ2p83oOvYnHMnH?s=cl&p=a&mlu=4&ilr=4

We hope to spread awareness about Long Covid/ ME/CFS and advocate for treatments and official diagnosis in Malaysia, as people with these diseases face extreme difficulties in this country. 🇲🇾

I’m very severe and often find it almost impossible to speak when someone first enters my room. Even though I want to talk, getting words out feels incredibly difficult.

But after about 5 minutes, it gets much easier, and I can suddenly talk relatively normally. I don’t seem to experience PEM afterwards, either (as long as I don't talk too much).

Does anyone else experience this? It feels like I need time to warm up before my brain and body can manage talking.

I haven’t been told this outright but every little comment is passive aggressive and adds up and this is what it really means.

Everything that’s ever said to be my family is that they really detest the situation, they always default back to denial and shame, disbelief and blame because even if they believed me for one moment, it quickly vanishes, morphing back into blame and back to square one. I’m not sure I’ve ever even moved out of square one.

I feel like everyone just says “I am never going to be okay with you until you are well, you have to get well (because I can’t handle it)”.

I don’t know that a human, me or any of us can take this amount of daily mental suffering on top of the physical.

I just needed to let it out. Thank you for letting me have a moment. Love to you all.

Please, tell me this is going to pass. It's not hyperacusis, it's more like a veteran mode where the filters of my body seems to not work properly and every neutral noise from TV bothering me even if the volume is very low.

I am in despair.

Just on the back of another negative LDN study, how valid is this research without bio markers confirming that we all have the same thing?

Hello, been suffering for about 2.5 years. I have 4 children ages 7, 5 and 3yo twins. My husband works away from home 4 weeks at a time with 2 weeks off. I recently was diagnosed by a neurologist with ME and im truly struggling to understand pacing given my situation. I do not have family in town to help me. I have been very sick since last summer when things ramped up but have had to push through to maintain my children's quality of life. It makes me worried I will never heal. I currently see a neurologist every 6 months and have been referred to a complex chronic illness program but the waitlist is 2 years. I have seen a naturpath who has experience and who has made suggestions and prescribed me LDN, as well as lifestyle and diet adjustments and a few supplements on top of what I already take.

My symtoms include:

Severe fatigue

Crashes lasting months (I only get up to care for my children and tidy)

Muscle fasiculations - body wide very severe at the onset but have settled significantly

Intermittent cramp like pain in random spots

Dizziness when standing (holter monitor test clean and blood pressure is normal)

Burning patches, wet sensations, tingling, perceived limb heaviness (i can not stress how horrible this is)

Trembling hands

Irritability

Brain fog (severe - stop speaking mid sentence i literally cant connect to my brain)

Urinary urgency with no uti

These symtoms move around sometimes daily, weekly, monthly but they persist constantly just at different levels of severity.

Medications:

Buspar

LDN

Ativan

Supplements

B12

D and K2

Iron

C

Omega 3

Creatine

Electrolytes with atleast 2.5 liters of water per day

Tuarine

Glycine

Magnesium Byglycinate and Malate

B5 (with other B's)

Licorice Root

Glutathione

I have had an MRI - clean.

Holter.

Lyme

A battery of other blood work and tests all of which I had to beg for.

Please if you have ANY TIPS for pacing or other helpful advice I am open to anything and thank you in advance.

I also use a shatki mat and lots of slow restorative stretching when im able. I am trying to hard to do all the right things. I just want to feel better for my family who need me 😞

If this post isn’t allowed mods, please take it down!

I am 19, ftm and I am looking for people around my age/ in their 20s to connect with. This disease can be so incredibly lonely, and a lot of my friends have ditched me because of it or moved on with their lives while I am left behind.

I still like to play games when I am feeling better, so I would really like to find someone who can do that with me, if you have discord too that would be great, but in general I just want someone to talk with, or even stream shows to watch together.

I think sitting in my room all day is making me depressed, I am just so incredibly sad constantly, I feel terrible and anxious 😔

Hi everyone,

I’m 34, a mum of two young children, and I’m going through a really difficult time with my health. My symptoms have worsened significantly over the past two months (and in general past 10 months), and I’m struggling both physically and mentally.

My main symptoms are:

- Almost constant chronic migraines, despite preventive & crisis treatments.
- Persistent tingling and altered sensations in my legs and feet, sometimes making them feel weak, heavy or like I’m walking on cotton (neurological strength exam was normal).
- Severe fatigue and exhaustion, making everyday activities increasingly difficult. (I had to stop working and even 2000 steps a day seems an Everest to me)
- Low blood pressure (around 100/70), dizziness, palpitations and difficulty standing.
- Brain fog, unrefreshing sleep, nausea and digestive issues.
- insomnia
- Difficulties regulating my body temperature.

ME/CFS is being considered (even though my neurologist says it’s a psychiatric disease 😭), but I don’t have a confirmed diagnosis yet. My symptoms don’t seem to have started after an infection, which makes me wonder if others have had a similar experience?? And I know if that scenario has lower / higher chances of improvements?

I’d love to know if anyone here has experienced this combination of symptoms, especially the constant migraines, leg sensations and low blood pressure. >> Have you found anything that helps, whether medications, supplements, pacing or other strategies?

I’m also wondering if anyone has managed to regain some energy or improve their daily functioning over time?

>> My mental health is really suffering. I’m scared of what the future holds and heartbroken about struggling to be the mum I want to be. Right now, my biggest wish is simply to have enough energy to enjoy mornings, evenings and weekends with my children, and hopefully work again someday.

I’d really appreciate any support, advice, shared experiences or words of encouragement and if you do have so some recovery stories maybe. I’d also love to hear how you cope mentally with the uncertainty and difficult days.

I’m feeling quite lost and isolated right now, and connecting with people who understand would mean a lot. ❤️

Thank you for reading and sorry for the long message I’m not used to Reddit yet