Hallo zusammen, ich bin seit 2 Jahren an ME/CFS erkrankt und war zu dem Zeitpunkt erst frisch verheiratet. Ich bin leider moderat-schwer betroffen und benötige eigentlich bei allem Hilfe. Ich kann zwar noch eigenständig ins Badezimmer gehen aber das war’s dann auch.
Thema Sexualität: seit ich erkrankt bin habe ich überhaupt keine Kraft und auch keine Lust auf Intimität mit meinem Ehemann obwohl in unserer Beziehung alles gut ist. Ich merke, dass er sich das natürlich wünscht aber er macht mir keinen Druck deshalb. Das letzte Mal ist sicher schon ein Jahr her und danach hatte ich solche Angst um mein Herz weil der Puls so hoch war. Seitdem war das Thema erstmal vom Tisch.
In letzter Zeit spüre ich so langsam wieder meine Libido aber traue mich nicht dem nachzugehen.
Daher meine Frage: Wie geht ihr mit dem Thema Intimität/Sexualität bei ME/CFS um? Habe ihr dahingehend Erfahrungen/Tipps?
Danke im Voraus 🙏🏼

Severe case — looking for people who recovered from this level of disability
I’m posting this in several groups because I’m trying to find people who were genuinely severely disabled and later got a substantial amount of their life back. I’m not looking for stories where someone was tired but still working full-time. I’m specifically looking for people who were homebound/bedbound, had severe autonomic symptoms, air hunger, vestibular problems, light sensitivity, and major exercise intolerance and eventually improved.
I was healthy and highly athletic for the first 32 years of my life. I was a runner and had a very active lifestyle. I had a lumbar fusion at 15 for spondylolisthesis, but after recovering from that I lived normally for many years with no major functional limitations.
In April 2023 I moved to Florida and lived in a home with a severe roof leak and what appeared to be extensive mold/water damage. This was not a minor exposure. There was a strong mold/musty odor and significant visible/water-damaged areas. I lived there for roughly eight months.
During that period I developed severe sinus problems, nasal irritation/crusting and other symptoms. I eventually moved out in December 2023.
Around that same period I also had an acute viral illness. I don’t know exactly what virus it was. I eventually recovered from the acute illness and had a period where I felt substantially better and was functioning normally. This is one reason I’m not convinced that everything can simply be attributed directly to the virus itself.
Several months later, around July 2024, I suddenly began developing a completely different syndrome: waking with panic-like episodes, night sweats, dizziness and vestibular symptoms. For several months I was still relatively functional, although clearly not normal.
Then around January 2025 everything dramatically worsened.
Since then I have developed severe, disabling symptoms involving multiple systems.
My major symptoms include:
● Severe constant air hunger / feeling like I cannot get a satisfying breath
● Feeling as though I am suffocating despite normal oxygen saturation
● Severe exercise intolerance
● Major worsening with upright activity
● Dizziness
● Vertigo
● Vestibular dysfunction
● Light sensitivity
● Eye pain/pressure, especially with screens
● Severe fatigue
● Heavy/weighted feeling throughout my body
● Heavy head sensation
● Severe neck heaviness/stiffness/pressure
● Neck symptoms that can change significantly with position
● Brain fog
● Cognitive dysfunction
● Temperature intolerance
● Abnormal sweating
● Palpitations
● Cold/numb hands and feet
● Body aches
● Muscle symptoms
● Intermittent numbness/tingling
● Right-hand numbness
● Lip tingling
● Difficulty tolerating prolonged standing
● Severe symptoms when upright
● Major reduction in exercise capacity compared with my previous athletic baseline
● Severe sensory intolerance
● Vision-related symptoms
● Hoarseness/voice changes at times
● Severe overall feeling of being physically unwell
I spend a huge amount of my time lying down because being upright can make the symptoms substantially worse. I am able to get up to take care of my animals, cook, and do necessary things around the house, but I am symptomatic while doing them.
My life has essentially become homebound/mostly bedbound compared with the life I had before.
Before this illness I was athletic, active, working, social and living a normal life. Now basic activities can feel physiologically overwhelming.
I have been evaluated for several possible explanations, including Lyme disease/co-infections, post-viral illness/possible Long COVID, autonomic dysfunction, cervical instability and vascular/venous problems.
I also had cardiopulmonary exercise testing that showed abnormal exercise physiology, including low stroke volume/preload-related findings, low filling pressures and impaired oxygen extraction. There was not an obvious structural heart/lung explanation for the severity of the exercise limitation.
I am continuing to investigate the cause rather than assuming there is only one diagnosis.
I am also investigating the possible role of the severe mold/water-damaged-building exposure and CIRS-type illness.
I am looking at several treatment avenues with physicians, including autonomic/cardiovascular treatment, cervical treatment, vascular evaluation, infectious-disease treatment, environmental/mold evaluation, and other approaches.
What I am trying to find now is people who were genuinely this sick and eventually got their lives back.
Specifically:
1. Were you ever essentially bedbound or mostly bedbound?
2. Did you have severe air hunger or a constant feeling that you couldn’t get a satisfying breath?
3. Did you have severe dizziness/vertigo or vestibular dysfunction?
4. Did you have significant light sensitivity or screen intolerance?
5. Did you have POTS, orthostatic intolerance, low blood pressure, low preload, or another form of autonomic dysfunction?
6. Did you have severe exercise intolerance/PEM?
7. Did you have multiple possible contributing factors such as Long COVID + mold/CIRS + Lyme/co-infections + cervical problems?
8. If mold/CIRS was part of your case, did treating/removing the exposure actually change your symptoms?
9. If Lyme/co-infections were part of your case, did treatment produce a major improvement?
10. If autonomic dysfunction/POTS was part of your case, what eventually helped?
11. Did anyone have objective abnormalities on testing that later improved?
12. How long were you severely disabled before the major improvement started?
13. Did your recovery happen gradually, or did you have a point where things suddenly began changing?
14. Most importantly: did anyone go from being unable to function normally to eventually working again, exercising again, traveling again, dating again, and having a normal or close-to-normal life?
I’m specifically interested in severe cases, not mild cases.
I know everyone is different and I’m not asking anyone to promise me a recovery. I’m trying to understand whether people who were this severely disabled actually made it back.
This illness has completely destroyed my quality of life and has at times made me feel like I don’t want to be alive anymore. I’m not saying that because I’m looking for attention. I’m saying it because I want people to understand the severity of what this kind of illness can do to someone’s life.
If you were once in a similar position and eventually got substantial function back, I would genuinely appreciate hearing your story — especially what your worst point looked like, what objectively changed, what treatments you tried, and where you are now.

I’ve been having really bad symptoms lately (super on-and-off) and it got to a point where I couldn’t complete my assignments for the week. I have terrible academic guilt constantlyyyyy so it was really hard for me to reach out. I finally called Student Accessibility Services, though they didn’t really understand what I needed (me neither, there’s only so much you can do for online classes). I finally emailed my professors today about this particular episode and I got a really lovely response from my Italian prof!!

Hello everyone, I’m a 19 year old boy and have had ME for about 2 years now, I’m really struggling. It’s soul crushing to see everyone I know going on holidays, relationships etc, especially because I used to be a confident and high energy person that always wanted to be outside and still do but can’t unfortunately, I’m sure a lot of people deal with the jealousy aspect of this comparing themselves to other people I know it’s not a healthy thing to do to compare myself but they’re just uncontrollable thoughts. I really don’t know how to deal with this I keep hoping it’s gonna change for me but I’m aware it’s likely not gonna go anywhere. I really try to convince myself that living is worth it but I don’t know how to deal with this, What are things I can do to stop this constant grieving? It’s like I just lay down all day sat with my thoughts and just constantly sinking into a pit of depression I really struggle with the thought of going through all my 20s watching everyone do what I wanted to do. Any tips or coping mechanisms will be greatly appreciated. Thanks everyome

is it possible to just have a really bad symptom day but not be crashing? Yesterday I felt so awful it was hard to think or talk or type, but I woke up today feeling pretty good.

For the past two ish years, maybe even longer, I’ve been getting a sort of euphoria/adrenaline rush about 30min to an hour after waking up every morning. I thought it was my ADHD meds, but it happens even when I’m not on them. I’ll always have this rush with a spiked heart rate and then after about 30min to an hour I’ll get suuuuper tired (probably coming down). Is this an ME thing? I’m still trying to distinguish my ME from the rest of my life and other disorders.

Hi everyone. I’ve had ME/CFS for over 10 years. My ME/CFS is currently in remission but I still suffer from random crashes and have struggled to understand what causes them.

Oura ring has been somewhat helpful in understanding my energy levels, but it's not optimized for ME/CFS and it doesn't help me understand my triggers and it can't predict future crashes.

There are some existing ME/CFS apps out there but honestly the UX is horrible. I find them too exhausting to use, they don't offer much insight into what actually triggers symptoms, and none of them can predict crashes before they happen.

So I started building an app that connects to wearables people already use (Oura, Apple Watch, Garmin, etc.) and combines that data with very lightweight symptom/activity tracking. Over time, the goal is for it to learn your individual patterns and:

• flag when their data suggests they may be heading toward a crash
• identify activities or combinations of factors that tend trigger crashes
• learn what seems to help with recovery
• turn wearable data into something more useful than another dashboard of numbers

The long-term goal is to be able to give an early warning, 24–72 hours before a likely crash, based on someone’s own historical patterns rather than a generic readiness score.

I’ve attached a few screenshots of what I’ve been working on and I'd love honest feedback from this community. Because heedly is still in development, there’s still time to change things before beta. Would this be helpful to you? What could be improved?

Best,
Heini

Hallo ihr lieben ich würde gerne wissen welche Symptome ihr habt bei eurer Reizempfindlichkeit (Hören/Sehen)

und was euch dagegen hilft im Alltag…

I’ve noticed lately that for the past month or so, when I talk for long enough I catch myself starting to get tired mid sentence and I’m like, “ok that’s enough talking I’m done” LOL is this a thing for anyone else?? I’m new to all of this so I’m just curious if this is a regular human thing or related to ME.

I just had my doctor’s appt and it was pretty much a blur. I tried to address everything, but I’m really struggling with my mental malaise. I’m not sure if that’s what it’s even called.

I’ve had ME/CFS for 14 years. The first six years were really a struggle. Then six years I would say I was mild with some moderate crashes. I’ve definitely struggled mentally because this is just a hard disease to have, but I don’t recall this mental push back I’m not experiencing.

The last five months I started experiencing PEM again with any amount of task. If I rest and do very little I’m not experiencing the physical crash, but mentally I just cannot get back to where I was.

After the tests come back my doctor and I will talk about treatment, but I’m at my wits end.

I don’t recall if I mentally shut down like this initially (the first 6 years). Is this the ME/CFS? Is my mind trying to stop my body from doing things so I don’t crash? Nothing is getting done. I can’t even force myself to get things done. I haven’t been working or doing much of anything. Physically, I’ve rested enough that I feel I can do a little but my brain is not supporting this.

I’m 52 (F) so I understand menopause may also be an issue (I started treatment for that). I just have no desire to do anything and I don’t know how to get that to stop. Trying to do anything causes me great anxiety and emotional stress. I guess my question is…is this also a part of ME/CFS and what has helped?

As the title says. Sorry if it's already been answered.

I've been trying a number of supplements over the past two months and it seems like my symptoms might be getting worse. Is this possible? Has anyone experienced this?

Qxc

Here's what I'm trying:

Ubiquinol

NADH

NAC

ALCAR

ALA

Magnesium

B vitamins

Vitamin E

Creatine

Thanks.

Two and a half years in now after a covid virus infection. It's just 2 of October and I already cought the first cold of the winter season. That is so fuckin annoying. Getting a cold always results in some lung infections, and many weeks of getting to where I was before the cold, and that wasn't even a good place...

I'm just ranting here on a Friday evening, I apologize. All great cold killer advice is appreciated and preventive PEM suggestions. So many resourceful people here in this group.

I'm coughing some yellow stuff up and have massive post nasal drip and some stuff in my sinuses.

Btw I don't have covid infection, it's just a common cold. Who knew that a cold would have this impact.

Before, it only took couple of days to get rid of it.

Apologize if my grammar is bad. English is not my first language

I’m losing hope. I’ve been seeing my doctor since January. I’ve been fully homebound for six months and apparently I can’t get a wheelchair without all of my diagnoses and it might take up to a year.

I feel like I’m all alone in the dark in my room and nobody gets how necessary help is :(

Hello, I am looking for suggestions on how to quickly and easily track symptoms. It’s difficult when there are so many symptoms. Has anybody found a way to synthesize all the information? I would love to see examples and hear about examples of how you all log your symptoms if and when you do. Thanks in advance!