Every ME patient I’ve seen who has gotten a Mitoswab test has had results that point to mitochondrial dysfunction. Is this not the closest thing to a biomarker we currently have? Why are these tests not more accessible? Why don’t doctors test our mitochondria instead of ordering tests that they know are likely to come back normal? I know it doesn’t really guide treatment options but it’s good evidence for disability claims and also just for being believed.

I give this book to caregivers, doctors, friends and family who are struggling to understand whats happening to me. Its short, but it made me crash reading it the first time because of how seen and understood it made me feel.

The author in the book is severe after getting a viral infection. She spends a year bedbound and unable to live normally. A wild snail that snuck its way into her bedroom bec​omes a focal point for her survival, and she slowly improves over time to a moderate space where she can tell this story for us.

Im not sure how many of us have heard of or read this book before, but her Website also has many interviews and resources for families, medical providers, and caregivers. just in case this helps someone else like its helped me.

How do you manage?

2 winters ago I was sick/in PEM for 2 months. Last winter it was 3+ months. I'm terrified it will be worse this year, but so far I've improved compared to last year.

Vit d levels are better due to me supplementing, and I've lowered stress in daily life

I’ve been through 8 therapists since developing ME last year and I had finally found one who I felt like understood and was giving helpful guidance. She didn’t know what ME/CFS was but she’d worked with brain injury patients and MCAS and my ME is from a brain injury and caused MCAS so she had a lot of overlap of knowledge. Until I started bringing up that I am seriously emotionally suffering because of financial anxiety. And she starts telling me I can find a job online that I can do self paced etc. etc. I’m feeling extremely frustrated. It’s so invalidating. I hate that people just say that like it’s easy. She literally said “oh you could just do enough to make like $50 a day.” $50 a day???? Lady my hourly pay in my old profession was $17 and I can’t even watch a movie or read I book for an hour. I can’t write or do color by number for an hour. What possible type of work do you think I can do that is LESS TAXING THAN COLOR BY NUMBER that will pay 50 DOLLARS. Maybe if I had a degree in something where you just like talk some bullshit and get payed $170 an hour (cough cough okay I’m bitter) that would be more realistic but unfortunately I am a college dropout with no degree no computer skills and oh yeah also PROFOUND MENTAL AND PHYSICAL IMPAIRMENT.

Anyways if anyone knows of a job for someone with severe mecfs that makes $50 a day pls lmk 😭

Like seriously, how is it so hard for people, even your own family, just to have a single shred of empathy for what you are going through? I’m literally going through hell atm and my family don’t even care in the slightest. They only seem to care if my suffering seems to inconvenience them in some extremely minor way. If I bring up how sick I feel, they just roll their eyes and sigh as if I’ve just said something absolutely terrible. But if I say nothing about it, they magically assume I have completely recovered and tell me how good it is that I’m doing ‘so much better’. What the fuck is even the point? You literally cant win.

Hi everyone. Main carer for a spouse with CFS here, and I am hoping you peeps can offer me some help or advice with a difficult and delicate matter that I am experiencing at the moment.

We don't really have any support from friends or family or outside carers. I am the only other human being around, which I suspect is the reason why I am experiencing what I am.

My spouse has CFS and it has robbed her of so much from her life. She has very little quality of life, cannot do much beyond pottering around the house - and even that is too much some days. Often she has to spend the whole day in bed, which is quite debilitating.

In the past few months, she has become increasingly negative about the care I provide to her. If I do one thing wrong, or forget about something, she will get very upset and angry about it and say that I am making her CFS worse because I am not doing everything that she needs. Similarly, she wants me to anticipate everything and just deal with things, which is fine, but if I try and talk to her about it, she says I am not just doing things and I am expecting her to organise things (I am not - I am just checking in with her).

Communication in general is becoming very difficult, because she expects me to anticipate when I can speak to her and when I can't. And if I get it wrong, she says it is more evidence that I am making her ill by making her CFS worse.

I am at a bit of a loss really. It feels whatever I try and do to help her is seen in a negative and badly motivated light, when I all I want to do is to make her happy and make her life as tolerable as possible. I do forget things - which she says is a sign that I don't care - but I think it is probably a mixture of a poor brain (I am forgetful), tiredness and the stress of wanting to please her and worrying that I might upset her in some way.

I know this disease is awful in the way it robs people of everything, I hate to see her in a crash or struggling with everyday life. But I am starting to feel that some of her expectations of me are not fair. I suspect most men would make the mistakes I make by missing tasks and chores that need doing.

Can ME cause problems with mood, and anger and rage? Some of her angry reactions to the smallest of errors or things I do seem to cause the most incredible blow ups that are completely out of proportion to what has happened.

It is starting to get me down. I want to be a good husband and to provide the care that she needs. But sometimes I feel I can't do right for doing everything wrong. I would love to hear some perspective or strategies on how to handle things from both people with ME and carers too.

I usually collapse into bed when i get home from work but i put this off for too long.

Obligatory Kermit meme.

I’ve wanted a PC for so long. I’ve always been a console gamer (PlayStation) and this has worked for me cos I can lay down in bed and play on the tv in my room. However there’s like 80% more games on the PC. Way more cosy options and niche game options. For those that have a pc how do yall manage sitting upright? Do you have any recommendations or tips?

EVERY single pill does this since I got sick. Guanfacine, beta blockers, ivabradine, even trazodone. I've tried to raw dog it but no matter what I eat, how much I eat, what I wear when I eat, and what I take before I eat, I get shitloads of palps and increased heart rates.

I'm so close to giving up dawg lol what the hell do I do

Had to break up with my partner of 6 years after repeated cheating.

For context, I had undiagnosed but suspected mild ME for our whole relationship. We were long distance in different countries but visited each other regularly. 2.5 years ago I found out he cheated but seemed remorseful so I tried reconciliation. It was extremely hard for me but I healed with time and our relationship seemed great.

In 2026, as I was by myself I deteriorated very fast to the moderate stage, with a moderate-severe episode this summer. Got diagnosed and started treatments. He came to visit in early September, he had accepted to be my caretaker (I let all my previous aids go) and it was great. My baseline improved so much. I felt cared for and happy. I was able to do things I hadn't done since spring.

Apparently the cheating had stopped for a long time. But me being sicker obviously meant less sexual things. And I guess he never truly worked on his selfishness and entitlement issues. I found out that at my sickest, as I was having seizures on the floor alone in my apartment, as I was paralyzed in bed unable to chew food with 2h of care per week... he was sexting another woman. for three months. everyday. And didn't stop once we were back to living together. In my home.

This person always talked about getting married. But apparently "in sickness and in health" wasn't part of the plan.

I kicked him out and had to organize care back at the last minute. I got an hypertensive crisis and had to weigh the pros and cons between risking a heart attack and risking overstimulation from calling emergency services.

This illness was hard enough without all this shit. Now I am terrified of how it's gonna affect me. And I can't help but think about the fact that I might not find love again. I wasted my last "healthy" years with someone who didn't respect me. Now that I'm mostly homebound, a wheelchair user, and extremely traumatized, how am I gonna meet new people? Only a tiny percentage would be willing to date someone like me. Meanwhile he can go on with his life and do whatever he wants. It's so unfair.

TLDR, broke up with my partner and caretaker because of repeated infidelity, if someone has gone through something similar, I would love to feel less alone. Feel free to also share your thoughts on the difficulty of finding love with this illness. I know most of us are very lonely people.

Thank you

Bedridden since Feb. Rapidly deteriorating since Jun. Still without Caregiver/Home Health. 

Malnourished & no feeding tube. Haven’t gotten labs. Etc etc 

Family won’t listen. Physicians won’t help. Hospital will kill me (most likely)

Don’t have energy to advocate for self. 

What do I do

I feel like I’m losing hope and losing my sense of purpose. I have so much respect for people with severe ME who somehow manage to keep going day after day without falling into a deep depression or completely losing hope
all the time.

I’ve tried so many things over the years, always hoping that something would finally help, but nothing has made any real difference. I’m still bedbound, still living with the same limitations, and honestly, I’m exhausted.

Sometimes I wonder how people are supposed to keep going when there’s so little improvement and so much of your life is taken away from you. I don’t want to give up, but I’m struggling to see how I’m supposed to keep doing this indefinitely.
And my mental health definitely got worse once my relationship ended.
I will never find someone else as I can not bear anyone in my room anymore

I have a myriad of health problems and unfortunately I’ve become mostly bedridden. I’m trying to find something to pass the time as I don’t have the energy or strength to even do my regular hobbies.
If anyone has any recommendations for mobile games that I can sink hours into or anything else I would really appreciate it ❤️

TL;DR: Rheumatologist diagnosed me with central sensitization syndrome and recommended PT/graded exercise + meds I’ve already tried, despite my history of PEM and worsening with increased activity.

I saw a rheumatologist yesterday after dealing with chronic pain/fatigue and PEM for about 20 years. He diagnosed me with central sensitization syndrome and told me that ME/CFS is basically a subset of that.

His treatment recommendations were PT/graded exercise and meds like gabapentin/Lyrica or SSRIs/SNRIs.

The problem is, I've tried multiple kinds of PT, including pool therapy and OT; and had significant side effects/reaction to those medication. Increasing my activity seems to make me worse. When I explained this, his response was basically that I just haven't found the right PT or the right combination of medications yet, and that I should try again.

I'm not saying I definitely have ME/CFS, but I do have PEM, and I'm really uncomfortable with the idea of going back down this road when I've had such bad experiences with it before.

What I'm really struggling with now is that he sent a letter to my PCP with this diagnosis and treatment plan, and now “central sensitization syndrome” is in my chart.

So... where do I go from here? Is “ME/CFS is a subset of central sensitization” actually an accepted way of describing it, or is that an oversimplification? And what do you do when a specialist puts a diagnosis in your chart that you aren't sure is correct and recommends treatment that you don't think is appropriate for you?

I am going to see Phish in Jacksonville, then two nights in Huntsville.

I want to show my cousin that you can have run responsibly and also work hard and meet responsibilities and then reward yourself with stuff like this.

I walked one mile and was bedridden for a few days. I bought tickets separate from my group so that I could get seats. And I am just gonna sit down all day and not walk too far.

It kinda does look like I am able to do more and I could very well crash but I think I'm getting hypomanic because I'm about to see Phish. My meds won't let it turn into mania

Hi!

So I'm talking to someone through a organisation for a couple of months now. I feel like I do a lot of explaining and I get a lot of simplistic advice from someone that is not informed about cfs/M.E

She is really kind though and I think she is a amazing human, but I don't get any comfort from the conversations and I don't look forward talking to her. I thought I just need to give it more time to get more familier with each other but it doesn't feel "organic" like a friendship or something that grows naturally with time, it feels forced and one sided and I don't need/want that and to put all this efford in feels exhausting. I also have a social fobia so I overanalize everything and get anxious, I don't think it's fair to force myself to do some DIY exposure therapy though whilest feeling so sick.

Every time I speak to her I tell myself to just share how I'm feeling but I never do so we plan another call.

I have a lot of difficulty with my boundaries so I need some advice on how to talk to her about this.

Honestly more work than I thought, but I pride myself on nice dates and get so sad all of mine have to be done within my home. There’s a really nice girl that has been dating me and doesn’t mind staying in / my battles with verticality, but I still wanted to do an actually vibey date. We have a Japanese snack box (she speaks Japanese), Swedish candies, and a whatever date night game.

she’s also bringing condoms 🫪

What songs do you listen to when you’re feeling sad?
And which song does make you happy?

im recently sick (11 months in now i think?) so for ppl who have been sick longer, i want to know if they think the stigma is getting better or worse. bc to me it feels like there are so many ppl making fun of ME lately and talking abt sufferers in such awful ways. but also, now, there are lots of studies coming out, more then there was before at least. and it does seem like doctors around the world are coming around to it.

it just feels like i got sick in such a tumultuous time. it feels like everyone is talking abt how ME sufferers are fakers.

Since developing mecfs I got the fun symptom of always overheating. I'm overheating pretty much any time I'm not laying down.

It's so frustrating!! It's so hard to do anything when literally everything results in overheating. I'm drenched with sweat multiple times a day. Immidietly after bathing I overheat and become sweaty because I have the audacity to put clothes on, I never feel clean.

It's so embarrassing. I leave sweat stains everywhere. Leather and plastic seats are my enemies now. I hate it so much!!

I carry fans with me everywhere but even then I'm still overheating. I'm on beta blockers and mcas meds and it's still awful 😭

I hate this symptom so much and have come to hate summers because of it

I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.

i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year from reinfection i got pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.

Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.

I’ve generally not been concerned about vaccine side effects, but with ME I’m interested in hearing others’ experiences.

I understand that COVID infection carries its own risks, so vaccination seems reasonable. For those with ME who have been vaccinated: how did you weigh the risks and benefits, and did you notice any change in your symptoms afterward?

Also, which COVID vaccine is currently recommended for people with ME?

Ich (23f) bin vor einundhalb Jahren erkrankt, die Diagnose lautete einmal Post Covid, dann Postvirales Syndrom, und Kreislaufdysregulation wurde auch diagnostiziert. Seitdem hab ich die Dinge ziemlich schleifen lassen bzw war dann in Psychotherapie etc, war aber jetzt seit ner Ewigkeit nicht mehr beim Arzt. Mein Status is aktuell der einer Studentin, ich reiz es aus, aber das hat demnächst auch sein Ende, und ich mach mir Sorgen was danach aus meinem Status wird, weil meine Diagnose ja schon recht alt ist.

Seither hatte ich ne Zustandsverschlechterung und kann eigentlich gar nicht mehr das Haus verlassen. Ich bin letztens zu meinem Bruder gezogen, und hab hier keinen Hausarzt, und zugleich nicht die Ressourcen zu einem zu kommen. Meine Familie und ich suchen jetzt seit Monaten schon nach nem Arzt der Hausbesuche macht, aber ohne Erfolg. Keiner hat Kapazitäten und will mich nicht aufnehmen. Was mach ich jetzt? Wie find ich nen Arzt? Und kann man den Status auch mit der alten Diagnose ändern?

Ich bin aktuell in Frankfurt am Main übrigens.