u/nome_dane

Is ME/CFS actually treatable or even curable?
I’ve recently been reading more and more posts where doctors and researchers seem to suggest that ME/CFS may be treatable, and that some people may even be able to recover.
Honestly, I’m feeling a bit overwhelmed and confused by all the different information.
For those of you living with ME/CFS: What are you currently doing to improve your condition, and what treatments or approaches have genuinely helped you?
I’d also love to hear from people who have improved significantly or consider themselves recovered. What do you think made the biggest difference for you?
I’m especially interested in what is actually supported by current research, rather than miracle cures or unproven treatments.
What can we realistically do to give ourselves the best chance of improving or recovering from ME/CFS?

Can it be possible to have both ME/CFS and FND?
I was diagnosed with ME/CFS after a viral infection. About 6–8 months later, I started developing neurological symptoms that eventually led to an FND diagnosis.
I’m wondering if it’s possible to have both ME/CFS and FND, and whether ME/CFS or the prolonged physical stress on the nervous system could potentially contribute to developing FND.
Has anyone here been diagnosed with both ME/CFS and FND? If so, which one came first, and how did you distinguish between the symptoms?
What can help? Please let me know your experience.

I’m wondering if anyone with ME/CFS has experienced symptoms that look very similar to a stroke.
The first time this happened to me, the ambulance crew thought I was having a stroke and took me to the hospital immediately.
For me, these episodes usually happen after physical or cognitive exertion, during what feels like a crash/PEM. It feels as if my muscles suddenly stop working properly. I still have the intention to move them and I try to move them, but I seem to lose control over them. Instead of the movement I’m trying to make, I may only get twitching or involuntary movements.
During these episodes:
My right eye closes and I completely lose control over it. I can try to open it, but it just won’t open.
The right corner of my mouth becomes stiff and pulls upward, and I have difficulty controlling the muscles on that side.
I can’t speak properly. I know what I want to say, but when I try to speak, only unintelligible sounds or “baby talk” come out.
My arms and legs can also suddenly become extremely heavy, almost like they’re made of lead, and they can start twitching as well.
I’ve noticed that when I get upset, stressed, or angry, the symptoms become much worse. Over time, I’ve learned that the best thing I can do is stay quiet, calm down, and reduce stimulation until it passes.
Has anyone with ME/CFS experienced something similar? Especially the combination of one-sided facial/eye symptoms, temporary inability to speak, heavy limbs and loss of muscle control during a crash/PEM, where the symptoms improve again after calming down?
I’d really appreciate hearing about other people’s experiences.

I have 10,000 shares of Plug Power with an average price of $1.20.
Would it make sense to sell half of my position now to secure some profit and cover my initial costs, and then let the rest run long term?
Curious what you guys would do in this situation.
Thx

I’m dealing with severe gastrointestinal issues alongside ME/CFS and I honestly don’t know what to do anymore.

I’ve tried quite a lot already, but nothing really helps long-term. Every day I have significant abdominal discomfort, mainly on the right side, and frequent diarrhea. It’s exhausting and is draining what little energy I have left.

I feel like this is really worsening my overall ME/CFS symptoms because the constant gut pain and urgency just add another layer of stress and fatigue.

Has anyone found anything that actually helps with similar symptoms (diet changes, medications, supplements, gut testing, anything)? I’d really appreciate any experiences or advice.

31 y / 📍 🇨🇭
I had the Mirena IUD inserted in 2022 for suspected endometriosis.
After insertion I had severe daily pain for ~7 months and was repeatedly told to “wait it out.” Eventually it improved somewhat, but I was never fully symptom-free.
After ~2 years I developed new symptoms:
severe acne (face)
increased facial hair (chin, cheeks, neck)
strong mood swings
I still have the Mirena in after 4 years because I feel overwhelmed about removing it and dealing with hormonal changes.
I was also diagnosed with ME/CFS.

I now experience severe crash/PEM episodes that feel neurological. They often start with flashing in my right eye, followed by:
one-sided facial tingling/numbness/heat
eyelid partially closing
slurred or “baby-like” speech
stiffness / feeling like my system shuts down
Resting usually helps it resolve.

Has anyone experienced Mirena together with ME/CFS or similar hormonal + neurological symptoms?
I’m trying to understand what might be causing what in my case.
Thx

F / 31 y - Switzerland 📍
I was diagnosed with ME/CFS 2 years ago. During crashes, I sometimes get symptoms that look stroke-like, which is very frightening.

When I overexert myself, my right eye starts flickering and can partially close on its own. After that, I get facial numbness, warmth, tingling, and sometimes involuntary muscle movements around my mouth. My speech can also become slurred or “baby-like” for a while.

These episodes always resolve with complete rest, but they have previously been severe enough that emergency services suspected a stroke (CT/MRI were normal).

Has anyone else with ME/CFS experienced similar neurological symptoms during crashes? Is this something others recognize, or should I be looking beyond ME/CFS?