Make ME Visible

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

[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

[Andrew Green @AndrewG76201347]

@julia_doubleday Since I started rapamycin last year I’ve only had one PEM episode — which was triggered by singing 😬

[Make ME Visible @makemevisible24]

Of course I'm resting now because I don't want to overdo it, because I know that Ativan gives fake energy as well. It's crazy how one medication can make so much of a difference. I wish I could take it every day.

[Make ME Visible @makemevisible24]

Woke up with very low energy, so I had to take an Ativan because I had to go out, and it moved me to physically moderate or at least moderate-severe. I have been physically active almost the whole day and been upright almost the whole day because of Ativan. 😱😱

[Rebecca Ryan @DrRebeccaRyan]

@bryce That was the initial thought. But evidence shows benefits above and beyond simple weight loss. Reduction in inflammation. Improvement in vagal signaling.

[Make ME Visible @makemevisible24]

Thyroid med gave me an improved mental baseline three days ago. Just like the cgrp drug. Obviously, I got excited and overdid it for three days. But I was able to manage three days without ativan. However, my mental baseline decreased drastically after that. NOW HAVE TO PACE.

[Rebecca Ryan @DrRebeccaRyan]

@gemoscatelli It is because it stabilized your overactive mast cells in your gut. Dried out your faeces and this faecal loading causes severe diarrhoea, h2s SIBO and all the upper GI symptoms
Make sure the gut is moving properly Before starting these drugs and you don’t get side effects

[aniuska @anallinaresg]

he is literally a violent man who did this in public, but people don't want to believe that he assaulted two of his exes in private...

[Make ME Visible @makemevisible24]

@anna_reise87030 Amitriptyline moved me from extremely severe to moderate ten years ago. But 50 mg and then slowly it was reduced. Currently on 10 mg. I'm severe now tho

[Make ME Visible @makemevisible24]

@Dfrizz007 So weird cos I wake up with a hot head. I just don't understand cos I thought sleep and no stimulation would've cooled my head down but clearly not

[Make ME Visible @makemevisible24]

@pausedME daryna is is Berlin and she's very severe. She just travelled from Ukraine. Can you help??

[TamaraDnomad @TamaraDNomad]

Daryna’s update: she is going to be homeless tomorrow unless we find an accommodation. All accessible places are booked. We’re waiting for an NGO to answer but still no news. This is very stressful. We need to book an ambulance, with no destination is not possible #MECFS #pwME

[Arf-PEM-Jansen 🪫 @dokter_Arf]

@sanilrege Patients with BIG response almost all took intermittent (!)

I’m wondering how ALL symptoms improve : what exact mechanism @sanilrege ?
- apart from reducing glutamate excitotoxicity
- and limiting tolerance ?

WHY is this subgroup responding ?

Would y know why so effective ?

[Arf-PEM-Jansen 🪫 @dokter_Arf]

@sanilrege Specifically interested Pregabalin, cause when I take it intermittently every other day it 1) helps sleep deeper + All MECFS symptoms improve. For about 20 hours.

So I collected data 1) online polls +2) anecdotal reports

- 22% ME/LC ptnts ➜ big positive response
👇🏻

[Rheuma Doc @LastManStand85]

#Sjogrens treatments on the Horizon, Phase 2. They are coming, not long now…
#EULAR2025 #MedTwitter

[Make ME Visible @makemevisible24]

@rolandgarros And an abuser.

[val @visceralfeel]

i think it’s important now more than ever to circulate this story once again. it’s a tough read but we can’t let a trophy erase what a horrid human being he is. https://t.co/1l5vdGoOfT

[Memorial ME Victims R.I.P. @MemorialME]

🖤#RIP Christine Cotton 1970 - 2026 🖤

Die mutige Wissenschaftlerin litt an #LongCovid, unerträglichen SFN Schmerzen, EBV-Reaktivierung, CD8-Lymphopenie...

⚠️Eine schwerkranke Pharma-Insiderin nahm sich das Leben, weil sie die Chancen auf wirksame Medikamente besser kannte...💔

[Make ME Visible @makemevisible24]

@dorm_ammu Hahahahahaha, I used to love this video and song.

[Rebecca Ryan @DrRebeccaRyan]

@thegarybrecka And eat a piece of corn. If it takes longer than 24 hours to come out you are full of old poo which is driving dysbiosis, gut inflammation and “leaky gut”. Yet may be completely asymptomatic

[Make ME Visible @makemevisible24]

@IsabelRamirezRD @tessfalor @KatBoniface @TaraFotiPhD @doc4care Yeah I couldn't fo Enrique s tonight I'm loving you the other day 😂

[Dr. Gee @askgodswill]

GLP-1 drugs were designed to lower blood sugar. The surprise is what else they do. In people with autoimmune disease, users had lower mortality, fewer strokes, fewer ER visits. Why? These drugs calm inflammation. And inflammation is the engine behind most chronic disease.