M & ME (μι & ΜΕ)

ME/CFS sufferer

[M & ME (μι & ΜΕ) @Mar139477]

@FatigueMe92484 Chronic stress should be more researched, in context of ME. I don't know why it's not discussed enough and everything is attributed to viruses. Stress is not "in our heads", it's a biochemical process. And ADs are not the cure for everything.

[M & ME (μι & ΜΕ) @Mar139477]

@LucienDorman @liamsLCjourney Well, maybe it comes down to my texts but it always wants to combine EVERYTHING I say, instead of saying "nope, that sounds irrelevant, I'll leave it out". Anyway, I can't tolerate anything that raises serotonin, so, the most effective treatments are out of question for me.

[M & ME (μι & ΜΕ) @Mar139477]

@liamsLCjourney The problem is that I don't know my trigger or the exact onset date. It could have been 2025 but it could have been 2023, when I was diagnosed with "anxiety disorder". The AD I went on might have saved me from 2023-25 (cessation) OR distroyed me. AI hallucinates there. Anyway...

[M & ME (μι & ΜΕ) @Mar139477]

@liamsLCjourney Thanks for the heads up. I'll try again in a few days, if I ever get out of this pem.

[M & ME (μι & ΜΕ) @Mar139477]

@liamsLCjourney How? Because, whenever I feed AI my symptoms, reactions ect, the only answer I get is "*at your severity*, the best you can do is pacing". If I push it a bit for actual answers, it hallucinates.

[M & ME (μι & ΜΕ) @Mar139477]

@HealMEICC @MastcellMadness 1mg? Vielleicht meinst du 0.1mg?

[M & ME (μι & ΜΕ) @Mar139477]

@liamsLCjourney @MastcellMadness Yes please. It should be changed ASAP. It's a train wreck in slow motion. So much money and potential down the drain. Can we make a petition or a group mail? We have a week before she comes back and starts.

[M & ME (μι & ΜΕ) @Mar139477]

@PlzSolveCFS Well, THIS is a dancer with severe mecfs, with real representation of the horror of this illness.
https://t.co/CBgDi1W2Mm

[M & ME (μι & ΜΕ) @Mar139477]

@anamarz_amz @AntoineMECFS , Wow what kind of magic is that? Any speculations why?

[M & ME (μι & ΜΕ) @Mar139477]

@chydorina I've heard that taking melatonin often /high doses can desensitise your brain and make you not feel sleepy. Is it a real danger?

[M & ME (μι & ΜΕ) @Mar139477]

@RenegadeRes @FionaPWME @PlzSolveCFS I have the same question. Can EU be included?

[M & ME (μι & ΜΕ) @Mar139477]

@JackHadfield14 @farbeyondtired Reasonable. Do you have any suggestions?

[M & ME (μι & ΜΕ) @Mar139477]

@JackHadfield14 @farbeyondtired I'm extr. severe, 41, with serotonin and dopamine intolerance (thanks to antidepressants, they fried my receptors). Do you realistically think there will be treatments for this profile within the 2-3 years?

I'm not the only one. Actually I've found many people with this pattern.

[M & ME (μι & ΜΕ) @Mar139477]

@FatigueMe92484 Thank you for your insight. I had in mind a pwME with a sibling with schizophrenia. Not the person with schizophrenia itself. Would it be still dangerous?

[M & ME (μι & ΜΕ) @Mar139477]

@frausteinbock It threw me from severe to v severe. And it will take me more than a year to stop completely. Weaning off has terrible side effects. Stay away please, doctors prescribe it like skittles

[M & ME (μι & ΜΕ) @Mar139477]

@scott_scientist They're too severe to either reach them physically, and /or the treatment itself is too risky for their baseline. We're basically left with LDN, LDA and mestinon (for neuroinflammation).

[M & ME (μι & ΜΕ) @Mar139477]

@DeafVaxInjured If you mean mecfs, neither jab, nor covid. Antidepressant cessation. It's not talked about though

[M & ME (μι & ΜΕ) @Mar139477]

As a very severe pwME in Greece we're:
-excluded from effective treatments (IVIG, IA, SGB)
-denied basic rights because ME isn’t seen as a disability
-no access to safe, controlled euthanasia
Outcast by medicine and law.
We don't belong either among the living, nor dead #MECFS