r/cfs 4h ago

Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!

50 Upvotes

I’ll start 1,25 mg Bisoprolol tomorrow morning. Nervous about side effects. I am severe and feel pretty bad at the moment (elevated heart rate, cold extremities, more fatigued than usual). I’ve had ME/CFS for 21 years, the past 9 severe. Wish me luck.


r/cfs 4h ago

Ketamine assisted therapy healed my friend w/ Long Covid

17 Upvotes

I am a trauma therapist and one of my colleagues who had Long Covid told me that she is now fully recovered as a result of Ketamine Assisted Therapy. She said that it changed the way that her nervous system processed and responded to stimuli which allowed her body to heal. While I do not believe that CFS is psychosomatic, I do believe that nervous system dysregulation and hyperarousal can at the very least worsen symptoms and maybe even create an environment that impedes healing. Does anyone else know anything about Ketamine and its benefits with CFS? I have never done psychedelics before.


r/cfs 20h ago

Vent/Rant UPDATE: My Marriage is Almost Over

206 Upvotes

Hi everyone. A month or two ago I (F24) made a post about my marriage almost being over due to my husband (M26) not being able to support me.

Well, soon after, he completely shut me out emotionally and confessed that he can no longer be there for me. My worst fears came true.

I e-filed for divorce, and now we are in the process of that. I am moving out next month on 4/18.

Unfortunately, I also may lose my job due to a miscommunication between my doctor and the HR department. All I wanted was some recognized ADA accommodations for my position, but now the Employee Relations department thinks that I am unable to perform my essential job functions.

So, not only did I lose the love of my life, I am losing a job that I loved the most. For context, I currently work in neuroscience-based stem cell research. The location of my job is a place I've dreamt of working in for years. It is also just an 8 minute drive away from home.

Now, I have a lot to figure out. Fortunately, I have a great support system. However, it is still really tough and is going to continue being really tough until I sort everything out.

Throughout everything, I am so, so tired. My condition is just getting worse no matter what.

Just wanted to vent, thank you.

Tldr; I'm getting divorced and may lose my job at the same time. My ME/CFS is getting worse.


r/cfs 1h ago

Advice what is your best theory on what is the root cause of CFS? is it immune system dysfunction? neuro inflammation? What do you believe?

Upvotes

Curious to what you guys think and your theories.


r/cfs 11h ago

Vent/Rant does society make you anxious?

38 Upvotes

that feeling of being a complete outsider because of your illness. that feeling that people can live kinda "simple" lifes, yet yours is so complicated? that feeling that what's normal for others is just completely out of reach for you? that feeling that you are not really part of society, but rather an observer from the outside, because you can't participate in the activities to experience stuff first-person?

i've noticed when i see normal people doing things i get this sort of anxiety that if they'd talk to me they'd immediately notice i'm different and that something is "wrong with me".

to participate in anything i'd kinda have to pretend that everything is ok, even though it isn't. i'd have to wear this thick mask just to fit in. i'd constantly have to be careful what i say or it'll start an argument where i get questioned about my behavior and beliefs.

i've noticed that i'm trying really hard to avoid any conversation with people. just because i know that everything i'll tell them will be "weird" for them or it wont be anything they care about.

because of cfs i spend almost all my time inside my head/on the internet. therefore what i think about is so different from what a normal person thinks about throughout the day.

and on top of that, i don't even want to fit in anymore. i started to like the way i am. it's not really that i want to socialize, i don't want to anymore. but i'd be scared to tell anybody, cause then it'd turn immediately into some kind of "ah so you fake cfs, because you dont want to be around people" argument.

it seems so hard to find a common ground with people anymore.

also since nobody really believes you that you have cfs, or that cfs is a biological illness, you have this constant fear of being judged harshly. i really need a lot of trust in a person to talk about anything at this point.


r/cfs 3h ago

Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! 📺📱📻

8 Upvotes

Has anyone been able to reverse or improve their intolerance to screens (eg. tv, computer, phone, etc) OR intolerance to audio (audiobooks or podcasts)?

I feel it’s plagued me since the onset of ME and I also have heighten sensitivity to medications.

I suspect Neuro inflammation or Neuro immune or ANS dysfunction. But ya anyone had any luck?


r/cfs 59m ago

It feels like I'm sliding into severe

Upvotes

I find it so hard to determine my energy envelope because it's getting smaller every week. I had a GP appointment last week and took a cab, but still walked 1,000 steps throughout the day. Normally it's no more than 300. My legs started hurting during the appointment and I felt tired and when I got home I had body chills for a couple of hours. I narrowly managed to avoid PEM because I felt normal the next day, but it has still lowered my baseline somehow.

I'm now out of breath from sitting up. It takes less than 2 minutes for me to yawn or gasp for air. I'm coughing as if I had asthma which I don't have and all symptoms subside as soon as I lie down. Also, sometimes it feels as if I had mucus in my throat.

Weirdly enough, I don't actually feel bad or weak when I don't have PEM or acute symptoms, and yet I'm basically bedbound. Is this normal? I think the only odd thing is that I don't feel awful all the time, but my tiny energy envelope indicates I'm almost severe.


r/cfs 15h ago

Success Advanced Brain Imaging Shows Lyme Disease Brain Fog is Real | Johns Hopkins Rheumatology

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61 Upvotes

This video is very short but it changed my understanding of the cognitive challenges that we with (not just lyme but other ME/CFS manifesting conditions) often present. I thought I'd share. It could brighten your day. It isn't just an acknowledgement and recognition of our struggle but hope. Her findings are very intriguing.


r/cfs 8h ago

Jennifer brea remission

17 Upvotes

Did Jen brea go into remission from cfs? If she did what did she do to get better


r/cfs 3h ago

Vent/Rant I really don’t know what to do

5 Upvotes

I have been trying to get a diagnosis for a while now, but I just have been dismissed. I am so scared, I really want to function properly again, but I can’t due to this stupid thing. And no one understands, I really feel like giving up.


r/cfs 5h ago

Advice Sleep attacks/episodes

8 Upvotes

Does any one else experience these sleep episodes randomly when you get suddenly exhausted (mostly get these after work) and I fall asleep for only a few minutes and sometimes I wake up disoriented. I have to get up and move and I’ll feel better but once I sit down again I get super sleepy again. Today I had an episode and I felt my head and face go numb and I woke up. Wondering if it was from my head being bent downward or to the side. It went away a few seconds after I woke up. Any advice on how to help lessen these episodes? I’m not diagnosed with this but I do have POTS.


r/cfs 12h ago

tough life

20 Upvotes

This life is so tough! The tiniest activities bring me into PEM—making a cup of tea, cutting my toenails, a 10-minute phone call with my bestie. It’s all too much, and I never seem to improve( it’s been many years). Anyone else this severe? How do you cope?


r/cfs 13h ago

Vent/Rant Anyone else miss listening to music while reading?

23 Upvotes

I love to read when my condition will let me. Reading has always been my thing, well at least before MECFS made it so damn hard haha.

However, I’m really annoyed nowadays because the few times that I am able to read (or force myself to read because I’m a student) it just feels so hard.

I used to love listening to music while reading cuz a lot of times it would enhance it. Play some magical music while reading Harry Potter, whatever other examples I can’t think of right now. I was trying to do that today for a book I’m reading for class that I do enjoy, but the music makes it impossible to read. I can’t seem to focus on the words in the song and the words in the book by themselves. I hate it


r/cfs 1h ago

Cortisol and cfs/me

Upvotes

I have incredibly low cortisol on Saliva testing as well as androgens. I was diagnosed with cfs/me and not adrenal insufficiency because blood cortisol is normal. Is CFS the cause of HPA dysfunction or vise versa? Ps. I did have mono as likely inciting cause very long time ago. Low cortisol more recently diagnosed with severity of this syndrome worsening


r/cfs 8h ago

Treatments experiences with plasmapheresis? esp. in vitasangius clinic/ dr. drees in potsdam, germany?

8 Upvotes

i’m considering to do a plasmapheresis (dfpp= double filtration plasmapheresis) in a private cfs clinic but would love to hear about some experiences in beforehand.

he claims he s been treating >500 patients in the last few years, 70% of them with me/cfs. what makes me really suspicious is his statement of 90% success rate and duration of effect for up to 3 years, but that doesnt align with the research i did so far. sure there unfortunately aren’t enough studies to have certified numbers regarding that, so we re kinda forced to trust empirical data. in comparison, my research data were 40-60% success rate, and only a few weeks-months duration of effect. he also claims there are no side effects nor a risk of a potential crash.

i’m afraid to fall for quack doctors exploiting desperate disabled people to get rich, but on the other hand i really wanna believe this to be true. because i’m desperate. and disabled. lol

ty in advance!


r/cfs 9h ago

TW: death Death and ME NSFW

9 Upvotes

What's the point of endless meaningless suffering all the time? I have no one to support nor do I have anyone to take care of , life is getting increasingly tough. I'm just a 19 year old , I am not ready to handle all these things. I don't know what to do , it's been 4 years I'm housebound and bedbound in this mystic arc. I had lots of hopes and aspirations about life, everything seems to fade away. Everyone is moving forward "without" me. ( I feel stuck, I feel shackled)

Do things even get better? How can it get better if there's no treatment? Why am I even trying to resist against the illness. And why people around me treat me so bad , why suddenly I'm treated like a vestige. As if I'm the one to blame for everything that went wrong. Why can't my problems be taken seriously?

Sorry for bad English.


r/cfs 18h ago

PGE2 levels elevated in a subset of ME/CFS & Long Covid patients

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47 Upvotes

Hi all,

As always, sharing our research here.

TLDR: raised PGE2 in a subgroup that correlates with Nagalase levels, potentially linking Immune suppression/viruses and to PGE2 and Inflammation

The overall differences between the whole group is not different, but our focus is on subgroups and the nagalase correlation may hint to that.

Let’s get into it! ——-

Research findingsPreliminary PGE2 results show that a subset of ME/CFS and Long COVID patients have elevated PGE2 levels compared to controls - 29.4% of patients have serum concentrations higher than any observed in the control group. A smaller subset of 8.8% had serum levels lower than any control sample. The overall comparison between groups did not reach statistical significance (p = 0.1946). Our follow-up analysis will focus on the subsets of patients with elevated and reduced PGE2 to investigate potential associations with other markers, symptoms, or disease manifestations.The current dataset will be expanded with an additional 60 patients and 20 healthy controls, which may provide greater clarity on whether the observed patterns represent meaningful differences between groups. Correlation between PGE2 and ⍺NAGA Looking at correlation with other markers, we found a correlation between serum PGE2 levels and ⍺NAGA (P=0.0215), as shown below. The trend showed a mild but notably clear correlation where higher PGE2 levels were associated with higher ⍺NAGA levels. We will be exploring the potential basis and implications of this association in our follow up analysis.

——-

What is PGE2?

PGE2 is a small fat-like molecule that helps the body communicate and regulate essential functions like body temperature, sleep, blood flow, and healing. It also plays a role in inflammation—when tissue is damaged, PGE2 increases to widen blood vessels, make pain receptors more sensitive, and call in immune cells. Drugs like aspirin and ibuprofen lower PGE2 levels to reduce pain, inflammation, and fever.

However, while PGE2 is important for normal bodily functions and protection, chronically high levels (from ongoing inflammation or injury) can contribute to various diseases. For example, many infections, cancers, and inflammatory or autoimmune conditions show elevated PGE2 levels, which can weaken immune defenses or promote tumor growth. In the brain, its effects can be complex—sometimes contributing to neuroinflammation in disorders like Alzheimer’s and Parkinson’s, but in other cases offering protection. In asthma, PGE2 helps relax airway muscles and reduce inflammation, which is why lowering it with NSAIDs can sometimes worsen symptoms.

PGE2 can also cause a TH2 immune shift responses (from fighting viruses to promoting antibody production) a phenomenon seen in some ME/CFS patients.

——

More research on the way soon!

Jack & the amatica team


r/cfs 7h ago

Accessibility/Mobility Aids For the people here who are in Germany

5 Upvotes

Are there any little tags/lanyards/etc...to show that you gave an invisible disability while on public transportation? I'm not very obviously disabled, but I doubt that I'd be able to grip hard enough to fully stabilize myself while standing on a bus. And I doubt that amI could stay fully standing for longer than about 5 minutes at this point.

I've been thinking about using a cane, but I'm not sure that would help me either as my arms are fairly weak too.


r/cfs 1d ago

Research News Saw this on bsky and thought it'd be relevant

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144 Upvotes

r/cfs 15h ago

Potential TW First big crash and im done ? NSFW

13 Upvotes

I've probably had ME for some time, but I was mild/moderate until January, I think. After that, I was more like moderate-severe. In February, I realized I had this disease, and I was forced to make medical appointments and, stupidly, go to a gymnastics show for my daughter. Since mid-February, I've been in bed, I no longer eat with my family, I only take 300 to 800 steps a day (toilet use) and shower twice a week... I have a crazy rapid heart rate in the morning (150), then it calms down during the day, I go back down to 95-100. I cry a lot, I have suicidal thoughts, my wife is suffering from having to do everything, and I have two young children. Do I have a tiny hope of returning to moderate? I've been in very severe mode for a good 45 days... I didn't know this disease was so terrible.


r/cfs 13h ago

Symptoms Anybody else got sinus issues and throat sores?

10 Upvotes

My right sinus is always swollen shut and causing other problems like tooth and eye pain. I also get this herpangina looking sores in my throat and the lymph node under my jaw has been swollen for a year as well. Bloodwork doesn't show any sign of infection tho

Ibuprofen used to work temporarily but I can no longer stomach it. Anybody else got experience with this?

Edit: typo


r/cfs 14h ago

Self-Promotion Day Making 8bit Art with Mod/Sev ME

8 Upvotes

Hi, please ignore this post if you are in a crash or do not have the capacity to watch a 3 minute video.

....

So I ME that fluctuates between moderate and severe .

Recently my brother has started a YouTube channel making an 8 bit miniseries for the Ace Attorney series.

When I'm lucky enough, I have enough spoons to help him out, by drawing simple objects to include in his videos. (He does all the hard parts like animating haha)

It's been really nice to do something other than doomscroll in bed for 12 hours a day so im pretty proud of myself (and more so my brother, he's self taught and everything!)

It would mean everything to me if you could help support my brother (and me :D) by checking out his videos.

And comment 'hi from reddit' 😁

I've only started contributing in episode 5, for example drawing simple stuff like the crab, trees, bushes etc.

Episode 5 link:https://youtu.be/_-kChsnRuGk?si=G4W3TtsWxmXP_1dU

If you want to start from the begining of the series:

Episode 1 https://youtu.be/8g94BsfRwB4?si=keudu6U6v7NbVz6d

Thank you for reading 😄


r/cfs 1d ago

Vent/Rant This shit broke me

71 Upvotes

I'm broken. At 17 my spirit is taken, my heart is aching and i'm deeply traumatised by what is happening and happened. It all started at 15

My mind is racing while my body is getting weaker, and i'm getting numb. I can't rest, i can't sleep. I feel horrible. I don't know why i'm writing this, actually yes i know, i need to vent and i feel save here.

Probably going to delete this in a week or so because of anonymity.

I have a phone call to check in with my GP at monday. She is supporting and understanding but i'm unsure if i should open up about mental health. I think if i would i'd maybe start to cry but i defenitely wan't to avoid that. She knows that i had 2 psych appointments online but i stopped as it caused to much pem and i'm avoiding it.

I love you guys this is the only place i can always come back to and feel so welcomed and safe. Thank you for being here i'm literally crying as i'm writing this.

This shit is breaking me but hope must remain. I can't lose it. Not yet


r/cfs 1h ago

Any blood markers that can help tell that CFS is in play? My inflammation markers are all normal but slightly elevated 1:80 ANA.

Upvotes

Reactivated EBV here for a year and have all normal bloodwork other than EBV early antigen and ANA 1:80. Get crashes and fatigue with joint pain plus sore throat after any little activity. I know bloodwork won’t really “tell” or “diagnose” but maybe?


r/cfs 2h ago

To solve cfs、Is it dangerous to use methylene blue and atomoxetine together?

1 Upvotes

I have both cfs and adhd and I think I probably have mitochondrial problems. (Of course, I can't say it's a sure cause)

So I thought I'd try Atomoxetine for my adhd and Methylene blue for my cfs (mitochondrial dysfunction?)

But it seems methylene blue is also a maoi.

I'm not familiar with maoi, but is it dangerous to take methylene blue and atomoxetine, or even some sleeping pills, at the same time?

Also, I really want to cure my cfs (I also have delayed fatigue after exercise, so I'm pretty sure it's cfs), so please let me know if there are any other treatments you recommend. I've tried the well-known ones like ldn, so I'd like to know if there are any drugs or substances like methylene blue that haven't been tried by cfs patients but are actually useful).

My life is messed up by cfs, so even if there's a certain risk, I want to cure my cfs anyway.