An initiative in India to spread awareness about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) by a severe patient
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Joined December 2024
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A reminder for people with #mecfs. PLEASE PACE MENTALLY. if you do not, you will end up in a dark room needing 24/7 care. I did not pace mentally and now I struggle to tolerate lights and sounds and am only getting worse. Take cognitive breaks in a dark room to give ur brain rest
Make ME Visible retweeted
I'm currently trialing a drug called "Trimetazidine" and it works!
My entire vascular system is damaged.
Each cell screams for oxygen,which also caused me to develop heart failure.
My entire body burns/hurts, it feels like I'm running a never ending marathon sprint.
I feel sick, feverish, hypoxic,
but my heart is quiet, it doesn't scream for oxygen right now.
It's keeping me alive, and out the ER.
Trimetazidine is a a metabolic modulator that is prescribed for Chest pains, and it works by shifting your cells from fatty oxidation, which costs more energy, to breaking down glucose.
The heart relies more on fatty oxidation, so the effects are greater there, but it works systemically.
It's also used as a doping agent by athletes and currently being trialed for ME in Australia (TRI-ME trial).
The majority of Long Covid patients have blood flow issues, because Covid primarily damages the microvasculature system.
This affects everything and perfectly explains a lot of our symptoms.
Maybe some others could benefit from TMZ as well ? I have to also add that it can cause Parkinson like symptoms. A lot of Long COVID patients also suffer from neurological symptoms, so it might worsen that.
That's why this drug is banned in a lot of countries, so your doctor might need to import it, if they think it could benefit you.
Make ME Visible retweeted
People Who have had significant improvement in cognitive energy that is, those who improved by half a baseline or more what treatments and drugs work for you. Not looking for pacing and rest stories. I'll go first - ketamine! Pls RT
People Who have had significant improvement in cognitive energy that is, those who improved by half a baseline or more what treatments and drugs work for you. Not looking for pacing and rest stories. I'll go first - ketamine! Pls RT
Things that have improved in my body, even though I am severe
- Lack of physical crashes
- No malaise
- No flu-like feeling
- No extra fatigue during periods
- No hot sensation in the body
Last week, I was able to listen to a few shows, and I was surprised that I was still able to tolerate the audio and even process the information in the show to a decent extent. Today, I tried playing a show, and man, I was struggling to process it. the audio is hurting my brain.
At this rate of cognitive incapacitation, I should ideally be bedbound, but physically, I am doing so well. It's so baffling. I think my physical body is taking time to catch up with my cognitive decline.
Healthy people only see us in pain and see us sleeping on the bed, and think of us as weak and lazy, but they don't know the enormous amount of fucking strength it takes to survive this monstrosity.
Make ME Visible retweeted
Last baseline increase that allowed me to do all that was an iron infusion (ferritin was 24, & iron 56) 2 months ago. Brain fog & migraines gone, fatigue better. Before that other baseline increases are LDA, immunosuppressant treatment, and midodrine. I am also on bisoprolol.
Guys. I'm terrified. How do I get out of this state. Or at least how do I stop the decline. I don't want to end up extremely severe. Today I've noticed an even further decline in physical energy. At least I was physically fine till now. The decline is happening slowly & steadily
I've decided to aggressively rest till December 31st and see how it goes. I can't think of any other solution.
@alexandrite113 @rhirhiarhii the reason I can't aggressively rest is I don't get sureshot signs of a crash. I have physical energy and I feel the need to use it. I need motivation to aggressively resting. Amy, I need your willpower. I've tried many times & failed
My mental fatigue is really bad I'm struggling to think. I cannot deal with this level of cognitive incapacitation. It's only gonna get worse from now. I'm keen on trying glp1 but can't find any doctor to prescribe it. What else can I try? My mental fatigue is very severe.