Matt

@lara64390 It's a bad nightmate that just never ends.

Everyday I’m in utter shock what happened to me.

I don't know what happens after we die, but I know one thing: if ME/CFS is still a problem at that time, I have no interest in being born again. I NEVER want to exist in the same world as ME/CFS again.

@32Sfc46582 💙🕊️

Nous avons la tristesse de vous faire part du décès de Pauline Hongnat, âgée de 34 ans, qui a mis fin à ses jours le 17 mars. Nous adressons nos pensées les plus douces à toutes les personnes qui l’ont connue et aimée. A la demande de ses parents, nous lui rendons hommage, pour que “ces morts servent les vivants”, selon les mots de sa mère qui est prête à témoigner sur “le parcours infernal de souffrances et d’indifférence médicale”. Pauline était sévèrement atteinte d’encéphalomyélite myalgique (EM) et d’un syndrome d’activation mastocytaire (SAMA) très aggravé depuis quelques mois. Elle témoigne de sa décision et de son quotidien dans une vidéo, que nous pourrons vous partager ultérieurement en commentaire sous ce post, dès sa publication par la famille. ⚠️ Contenu sensible : la vidéo de Pauline peut être difficile à regarder. Elle avait également écrit ce texte sur son profil Facebook le 25 janvier : facebook.com/pauline.hongna… Malgré un bon suivi médical et beaucoup de soutien, Pauline ne supportait plus les souffrances qu’elle vivait au quotidien. Nous sommes de tout cœur avec sa mère Emmanuelle, son père Patrick et tous ses proches. ❤️ Sans oublier ses animaux.

@BhupeshPrusty I feel like people were saying this same thing in 2022-2023

Science around #MECFS is moving faster than ever before. Across the world, serious efforts are accelerating to understand its biology, improve diagnosis, and open paths toward treatment. Please do not lose hope. Real progress is coming, and the future holds promise. #HopeForMECFS

Every day has to end eventually. That's the only positive thing living with ME/CFS

@de3dsoul Windows XP was the best

Windows XP backgrounds (2001)

ME is a disease that not only affects the people that have it, but everyone around them as well. Those lucky enough to have a support system while being sick with ME know how debilitating it can be for everyone involved. Family, friends, caretakers: it takes a toll on everyone.

@Dfrizz007 Definitely. I'd check out Things Fall Apart, How I Got Over, and Cheat Codes

@Dfrizz007 The Roots Lupe Fiasco

Non sickness related questions. I'm curious what everybody's musical taste is, so below in the comments post your favorite band/artist. Then for the bonus post your favorite rapper/rap group I'll start Pearl jam Rap-Three six mafia/Ice Cube tie

As I've stated before, my Myalgic Encephalomyelitis (ME) began after I did a strenuous workout when I was still recovering from a viral infection. Something in my body "broke" that day and I've never been the same since. Now, I'm homebound and severely disabled.

@mecfsskeptic Did they say what those compounds were?

The presentation by Dr. Baldomero Olivera also focused on the itaconate shunt theory. He said they found two compounds that affect the ACOD1 gene and could treat the problem.

How do people afford to live with ME/CFS for decades? The moment I don't have caretakers or a support system for food, money, and housing, I will be in trouble. I hope ME/CFS research progresses sooner rather than later.

@diannahaze It helped me at 4mg/week. When I increased to 5 mg/week or anything above that, it actually made me feel worst. Getting the dosage right is important🙏

ME/CFS is the worst case scenario. It's been 5 years since I fell ill to this disease, and it's been a nightmare every step of the way. I have no idea if I'm ever going to live a productive life again. All I can do is hope researchers find something that helps us.

@DafoeWhitney What is the volume in mL per dose of NAD? The scoop doesn't read in milligrams

Ok I figured it out. I was using WAAAAY too much. 😂 I was using the scoop from the NMN powder by Renue by Science, but that's a 500mg scoop and the dose for NAD is 40mg -Soooooo that would explain the burning that others don’t get! But also maybe why I feel so much better!💪

I just switched from NMN sublingual powder to NAD powder and have had the best 4 days in months! But it's chewing away the tissue under my tongue until it's completely raw, and it's not sustainable. Anyone have any ideas for how to keep taking it without damage? I tried adding 1/32 tspn baking soda to it to balance out the acidity, but that of course just turned it into a bubbling fizzing mess and I don't think any of it absorbed. I'm using "Bulk Supplements" brand NAD powder thanks! 💙

The problem with ME/CFS is that no one really gives a damn about it unless it affects them or someone they know. In today's world, how do you make people care about something that doesn't affect them? It's very difficult.

ME/CFS is a ridiculously relentless disease that gives you ZERO breaks. This disease doesn't care about you or your life. The only thing ME/CFS wants you to do is die. I don't want to die though. I want to be CURED, to be able to live again.

ME/CFS is one of the worst things a human can experience on this planet. In terms of long term suffering and despair, it's in a league of its own. I don't know the reason human souls come to Earth, but ME/CFS destroys any potential reason for being here.

@OpenMedF Thanks for responding 🤦🏻‍♂️🤦🏻‍♂️🤦🏻‍♂️

@OpenMedF Is it on youtube?

Ron Davis, PhD, presented on ‘Diagnostic Breakthroughs and Therapeutic Horizons for ME’ during the annual International ME Conference Week, hosted by the UK charity Invest in ME Research. #MECFS #MECFSresearch #IIMEC17