Make ME Visible

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Make ME Visible

Make ME Visible

@makemevisible24

An initiative in India to spread awareness about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) by a severe patient

india Katılım Aralık 2024
347 Takip Edilen691 Takipçiler
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Make ME Visible
Make ME Visible@makemevisible24·
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
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Tamashīi 👻🖤
Tamashīi 👻🖤@Kaethihjaerta·
It should not be overlooked that lamotrigine tends to be stabilizing and has little effect on consciousness, whereas DXM can cause mild drowsiness and dissociation. Especially at higher doses, there are significant CNS effects.
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Tamashīi 👻🖤
Tamashīi 👻🖤@Kaethihjaerta·
Lamotrigine reduces glutamate release, meaning gentle attenuation, upstream. DXM blocks the NMDA receptors, so it acts directly, downstream. Both, therefore, dampen overexcitation in the brain, just at different points. In addition, DXM has a more noticeable effect on the brain.
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Tamashīi 👻🖤
Tamashīi 👻🖤@Kaethihjaerta·
Since Martin @pausedME is currently having such good results with Lamotrigine, and both Suza @suzatu and I are also seeing good benefits from dextromethorphan (DXM), I decided to take a closer look at both. Also because both act on the glutamate/NMDA system.
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Michael R Scoma MD
Michael R Scoma MD@DrMichaelScoma·
Exertion can also trigger immune activation, and metabolic disruption - elevated inflammatory signaling, buildup of lactate, and delayed recovery. The results is a prolonged, whole body "crash" we're even minimal physical or cognitive effort is impossible.
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Michael R Scoma MD
Michael R Scoma MD@DrMichaelScoma·
Autonomic dysfunction plays a major role. Impaired regulation of heart rate, blood pressure, and vascular tone reduces oxygen delivery to tissues. Blood pooling and hypo perfusion make extremities feel weak, heavy, and difficult to move.
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Michael R Scoma MD
Michael R Scoma MD@DrMichaelScoma·
The cell danger response (CDR) is the most unifying biologically plausible theory: following a stressor, cells remain in a defensive state, thereby altering signaling and metabolism. Energy is directed toward protection and muscles feel heavy, slow, and inefficient.
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Michael R Scoma MD
Michael R Scoma MD@DrMichaelScoma·
Why PEM Feels Like Being Weighted Down Post-exertional malaise is a systems level physiological crash. Following physical or cognitive exertion, multiple systems - autonomic, metabolic, neurological, immune - become dysregulated, producing that "lead body" sensation.
Michael R Scoma MD tweet media
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Martin
Martin@pausedME·
@TeichertManuel Not existing. At least now that I found out that Memantine wasn’t the best fit.
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Martin
Martin@pausedME·
No medical advice! At the beginning of February, I started Lamotrigine. Since then, so much has changed for the better. On February 14, I started tracking my steps. Since then: 364,771 steps. For me, that number means far more than distance. #MECFS
Martin tweet media
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Make ME Visible
Make ME Visible@makemevisible24·
@AdamB92_ Hey adam. Was wondering how you're doing. I hope you find some relief soon 🙏
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Jack | amatica health
Jack | amatica health@JackHadfield14·
A new brain scan study found widespread inflammation-related changes across the brain’s wiring in ME/CFS, and some matched worse mental health, more disability, and greater illness severity.
Jack | amatica health tweet media
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MECFS, MCAS and PTSD
MECFS, MCAS and PTSD@FatigueMe92484·
@makemevisible24 Do you have MCAS? It can be the mast cells aggravating the nerves. I have noticed it more often when I am overheated!
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Make ME Visible
Make ME Visible@makemevisible24·
Is eye throbbing/pulsating feeling and facial twitching a part of PEM?
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Make ME Visible
Make ME Visible@makemevisible24·
Or could it be side effect of lamotrigine? Any remedies?
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Stealthy Jess 🇨🇦 💜
Stealthy Jess 🇨🇦 💜@AdvancedTweaker·
Week 3: Final Maraviroc for LC Replacement Protocol Sanguisorba Officinalis (地榆) 6g/day decoction Sophora bud (槐花米) 6g/day decoction Notoginseng (三七) 1g/day powder Shikonin extract 30mg/day I'm also still on Raltegravir and Truvada. Some of these change the absorption of medications, so you need to be very careful with spacing out your doses. Too tired and too busy this week to break down the components & why. Will post something later once I have time. Verdict after 3 days of doing all four: Alive and kicking, no neuropathy so far, no more abdominal cramps, MCAS symptoms reduced. What remains: transient pressure from behind the eyes, a really dull neck tension that usually happens at night & quickly fades. Mood is ok now🤞
Stealthy Jess 🇨🇦 💜@AdvancedTweaker

Week 2 off Maraviroc - I got hit. Just the night after my last post, I started feeling dizzy, uncoordinated, and buzzy all over my body in a way I couldn’t control. The day after, I was feeling full-foot spasms again. They used to happen every day, but I haven’t noticed a single one since I got fully adjusted to Maraviroc. I knew something was up, and it wasn’t any chemical exposure this time. My dysautonomia was getting worse. On Tuesday, I woke up completely disoriented, shaky, nervous, and dreading that errand I was just about to go out and do. It’s like this electric current constantly permeated everything in my body now, no matter how I tried to stretch and move. Taking a beta blocker barely touched it. I left home hours later. Got on the bus and did a search for Maraviroc alternatives. Some people are born with genetic CCR5 inhibition, the same mechanism that makes Maraviroc anti-inflammatory. Surely there should be a natural compound that does the same? A forum thread popped out at me. There it was. A full paper! The herb is called Sanguisorba Officinalis and it seems to do something very similar to Maraviroc – possibly as an antagonist for the CCR5 receptor and virus bound to these receptors: sciencedirect.com/science/articl… Its other benefits include: (source: frontiersin.org/journals/pharm…) - Anti-inflammatory via reducing the production of cytokines - Reduces tumors via toxicity to cancer cells - Modulates neuroimmune signaling and neuroplasticity - Antioxidant effects - Antibacterial and antiviral effects across a broad range of species, including viruses such as Hepatitis B and coronavirus (and HIV) - Reduces chemokine inflammation, linked to neurodegenerative conditions such as Alzheimer’s, via CCR5 inhibition - Promotes blood clotting - Increases white blood cells - Lowers lipids and blood sugar levels Some of these are very Maraviroc-coded, but some are extra goodies. Its potency is not as great as that of Maraviroc, but better than most other herbs that have been in-vitro tested for their antiviral properties. After my errand, and not having regressed enough to stop being able to walk much like before, I hit Chinatown. At least here, it seems that most herb shops have it – I snatched up about 10 days’ worth for $5 on my first try. I also picked up a herb grinder, then dug out my slow cooker at home, and let it do its thing for a few hours. I held my breath, crossed my fingers, and drank my first cup of the 3g decoction (a starter dose, on the lower end). It worked. Within two hours, I felt like I could control my body again. I could breathe, relax, and think clearly like I did just a few days ago. I would rate it as slightly less effective as half-dose/150mg Maraviroc. Same dosing schedule, likely a very similar half-life. Caveat: I’m using this as maintenance after the main repair was done. I’m not sure how good it would be for doing the intial Maraviroc protocol for Long Covid. I say it’s always best to go with something that has more research evidence, but when this is the best you can get... Just a heads-up: As an antimicrobial, it did give me SIBO die-off. It will be a lot of work, but I’m now feeling inspired to buy more herbs I take as supplements and prepare them myself instead of collecting plastic bottles. For me, there’s a beauty to this connecting with what heals you this way. P. S. I’m feeling very N=1 here. I can’t find a single account of anyone trying this – maybe someone else can try it, too, and share?

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star@onbeing_ill·
i really need help getting my GFM out there pls pls pls help me i could see a good doctor in JUNE but i need to raise like $2k to do that. i have no income and my family cant help me financially this is rlly my only chance of getting help
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Stealthy Jess 🇨🇦 💜
Stealthy Jess 🇨🇦 💜@AdvancedTweaker·
This is incredible. I've struggled with hydrogen sulfide SIBO since mid-November. Diarrhea, extreme fatigue, dizziness, dehydration, brain fog, etc. every single day for months. Tried all kinds of often expensive things - oregano oil, berberine, Rifaximin, pepto bismol with molybdenum, alone or in combination. Rifaximin is the only one that sort of moved the needle. I'm not the only one - this type of SIBO is notoriously hard to treat and can take even a year. That Traditional Chinese Medicine herb combo I started taking because I ran out of Maraviroc - the things I did not take for SIBO at all - nuked it. A week after starting, my diarrhea blew up and then completely disappeared. No more rumbling, no sulfur burps for at least a week now. I still can't believe this.
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Liam's LC/ME Journey
Liam's LC/ME Journey@liamsLCjourney·
I've been talking to a lot of patients from other countries recently and noticed that that certain treatments seem to be disproportionately used in specific countries: Immunoadsorption - Germany Neuromodulation - Spain HBOT - UK/Ireland LDA - US (?) Inhaling hydrogen - Japan
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Ginny
Ginny@MsGinnyGirl·
#longcovid update: 4yrs of bad vision/sensitive to light. 3 USA opthamologists claimed “just dry eye”. In Paris, saw Dr bc eye was so irritated from the flight…bam a real diagnosis. Band keratopathy (Calcium build up across the cornea) & $100 treatment. Took a week to recover.
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