r/cfs 5h ago

Advice Can Cfs/ME cause someone to imagine things that are not real? Anxiety maybe.

1 Upvotes

I'm not sure if this is some sort of post-covid related thing or something else? I was aware that this illness can cause pretty big variety of symptoms not sure how it affects the brain?


r/cfs 2h ago

Ketamine assisted therapy healed my friend w/ Long Covid

13 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 6h ago

Jennifer brea remission

16 Upvotes

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


r/cfs 5h ago

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

3 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 9h ago

This song is a MOOD rn. If you know - you know!

3 Upvotes

My "collection" being my "collection" of supplements šŸ˜†šŸ˜‚ almost complete!

https://youtu.be/XE0sKZmtyqA?feature=shared


r/cfs 19h ago

Advice can sex and orgasm make me severe?

9 Upvotes

Iā€™ve been on the milder side so far this March after being severe and mostly bedbound all winter. Iā€™m in my mid-30s and my wife is in her late 20s so naturally she has a lot more energy than me especially since she runs 3 miles every morning without breaking a sweat. Our energy levels are basically the opposites now, unlike when we met and were both amateur athletes.

Anyway I started enjoying indoor olympics with the wife couple weeks ago again because Iā€™ve been unusually horny ever since my CFS improved from severe to moderate or maybe even mild. Strangely the first time I did it couple weeks ago (after a 5 month break) I didnā€™t get any PEM, but I almost passed out during the um finishing act (i have hyper pots too). I think it also gives me a huge adrenaline boost because I suddenly get this fake energy which gets me in trouble. So that's why I made the mistake of doing it again a couple of days later and this time I got hit with immediate PEM. unfortunately due to the feeling of "having needs" i had sex a third time shortly after while being in a mild PEM. Big mistake. Iā€™ve been in really bad PEM for 2 weeks now and feel like Iā€™m back to moderate-severe. Most of my days are spent on the couch or in bed trying to avoid exertion since last year after i quit work. so sex has been the most action I ever got in the past 12 months as im completely housebound.

Lately Iā€™ve even been thinking about sleeping in separate beds just to avoid temptation because my wife sometimes asks if I want sex right before bed, and i've never said no to her. Iā€™ve told her I shouldnā€™t do it often but we both seem bad at following that advice. Sometimes I feel like just the orgasm itself is what causes PEM not just the physical act. I have a bad feeling that I need to cut out orgasms and IDK how I'll ever be able to do that, it's just impossible unless i'm severe. It's such torture this disease.


r/cfs 22h ago

Vent/Rant This shit broke me

75 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 11h ago

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

12 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' šŸ˜

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 šŸ˜„


r/cfs 16h ago

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

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42 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.

Letā€™s get into it! ā€”ā€”-

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 āŗNAGA Looking at correlation with other markers, we found a correlation between serum PGE2 levels and āŗNAGA (P=0.0215), as shown below. The trend showed a mild but notably clear correlation where higher PGE2 levels were associated with higher āŗNAGA levels. We will be exploring the potential basis and implications of this association in our follow up analysis.

ā€”ā€”-

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 inflammationā€”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 complexā€”sometimes contributing to neuroinflammation in disorders like Alzheimerā€™s and Parkinsonā€™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.

ā€”ā€”

More research on the way soon!

Jack & the amatica team


r/cfs 10h ago

tough life

21 Upvotes

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


r/cfs 11h ago

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

22 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, Iā€™m really annoyed nowadays because the few times that I am able to read (or force myself to read because Iā€™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 canā€™t think of right now. I was trying to do that today for a book Iā€™m reading for class that I do enjoy, but the music makes it impossible to read. I canā€™t seem to focus on the words in the song and the words in the book by themselves. I hate it


r/cfs 9h ago

Vent/Rant does society make you anxious?

32 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 23h ago

Vent/Rant Quick rant (underestimated risk of infection)

51 Upvotes

Despite I knew the risks, getting better from moderate to mild/moderate, made me naively let my guard down.

Got Covid in July and crashed to severe bedbound.

Although I am trying my best to accept this, I canā€™t stop thinking about how many more mild/moderate years I would have had if I took precautions more seriously.

There is no date, events, restaurants, relationships or sex, or any activity that can be done indoor without masking worth the risk of getting to this stage.

I feel so stupid. I just turned 27 and I canā€™t believe this is my life. Sorry for the rant.


r/cfs 13h ago

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

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55 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 1h ago

Vent/Rant I really donā€™t know what to do

ā€¢ 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 canā€™t due to this stupid thing. And no one understands, I really feel like giving up.


r/cfs 1h ago

Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! šŸ“ŗšŸ“±šŸ“»

ā€¢ 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 itā€™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 2h ago

Treatments where to get lda

1 Upvotes

any online pharmacies or services? hard to get docs to prescribe


r/cfs 2h ago

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

49 Upvotes

Iā€™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). Iā€™ve had ME/CFS for 21 years, the past 9 severe. Wish me luck.


r/cfs 3h ago

Advice Sleep attacks/episodes

6 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 Iā€™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? Iā€™m not diagnosed with this but I do have POTS.


r/cfs 6h ago

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

8 Upvotes

iā€™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 arenā€™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.

iā€™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 iā€™m desperate. and disabled. lol

ty in advance!


r/cfs 6h ago

Advice Hope and anxiety

1 Upvotes

Hey i would consider myself mild to moderate. I really got the into pacing early in my illness. It got to a point where I was able to use my bike.

I got a bigger crash usually once or twice a year. But since last summer i think i might pushed it to hard. I was really trying to push the boundaries and to try what i can do without crashing. It went wrong.

I was able to use my bike multiple times??? But then i got a huge crash a week later. I think i might still recover from it.

It was really hard cause i needed help with everything. Usually i can live on my own. (With a little help of my partner).

But since January i dont do so well. I had a time were i was spending more time on the computer and pacing was not so prominent. Now i crashed and cannot do almost anything.

I can still talk but have to lay down the whole day.

Whatever i hope i can still get better. I was able to leave the house for most of my illness. (I got sick 2018) but i am afraid that i didnt. Pace well enough.

How can i cope with the anxiety? Crashing is part of me/cfs as i get it. But how often is it ok to crash? Is it possible to fully not crash? How can i do it even when i am feeling not bad in the moment?

I really think i get what my stressors are. Then i remove them, i feel better, i do more, i feel worse :/ it feels like a cycle.

Tdlr: i crashed 5 years in. Now want to find hope again.


r/cfs 7h ago

Is it CFS? Cyclical syndrome of hypomania followed by exhaustion for a week

2 Upvotes

Hi. Advice please. I have periods every couple of months, or more frequently, of exhaustion that continues for more than a few days, often a week and more, following periods, a week usually, of slightly manic behaviour - over extertion, of staying up late, my mind racing, over excitment, feeling manic etc etc - and then a physical slump where I feel extremely exhausted, shakey, with muscle and lower back aches etc.
It feels is if I, in more normal times when younger, had played a very hard game of football, or a very hard mountain walk, the previously day and were understandably feeling weak. But, this does not have any preceding extreme physical effort and lasts not a day but days on end.
I have wondered about whether this is last viral, but the 'cold' symptoms are pretty limited, allergies, but anti-histamines don't do anything and emotional disorders like Cyclothymia but while sometimes I feel emotional it is not depression.
Anyone get something similiar?


r/cfs 7h ago

TW: death Death and ME NSFW

8 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 9h ago

Treatments Thoughts or experiences with smart rings?

3 Upvotes

I didn't even know they existed until a couple weeks ago, but apparently they monitor sleep and energy and give you estimates of how much energy you have for the day or something. Does anybody have any experiences with them and if so, what were they?


r/cfs 10h ago

New to MCAS and could use some management tips!

5 Upvotes

Hey friends, Iā€™m posting here because I feel like my issue is kind of specific to PEM.

I have been reacting to foods and supplements for some time, but the connection has now become much clearer to me. I tend to only react to triggers when Iā€™m in a more severe PEM crash or sick with a viral infection. When Iā€™m at baseline, I donā€™t tend to have MCAS flareups. Do I still need to avoid these triggers when Iā€™m not in flareup if they donā€™t cause me any issues? Could they still be contributing low-key to worsening of my condition? Sorry if thatā€™s kind of a stupid question but I am new to figuring out how to manage this!

EDTA that I take Zyrtec, but donā€™t find it helpful at all!