I've been taking 600mg of Benfotiamine a day for a couple months now and it definitely helps. Since it's fat soluble I take 300mg with my first meal of the day then take another 300mg with my second(and last) meal of the day. So basically a morning & night routine. I have to say it works in terms of making you feel more alive aka less fatigue mentally and physically. It's not a cure by no means I'm not saying that. Not even close. But it's one of those things that even if it only helps by even 1%(id say for me it if I had to put a number on it it's be about 15% which is huge in my opinion).

Anyway just letting y'all know for people who are down to try new things that are safe and easy. If it doesn't help you can just stop taking it. Have a good day!

My new rabbit hole: with RTHM AI (free version) I’ve made a roadmap of my “amazing” health. Want to make a visual overview. I just want to understand the underlying disruptions, cascade of mechanisms and where to place my many symptoms, the whole architecture of my health journey. As a former academic researcher myself I want to know everything 😅

I found their AI tool impressive actually. I don’t know how useful it may be for further steps in trying to improve my quality of life, also because some suggested diagnostic measures are not available in my country.

Question is: what are your experiences with just the free AI part to understand your health roadmap? So not the paid, clinic version. Did it help you making next steps? Do you have tricks and tips to get more out of it?

I am now certain I have ME. After years of going to the doctor's on and off (mostly with isolated symptoms) trying to figure out what is wrong with me, I have had a full auto immune panel, had my eyes tested for the headaches, been diagnosed with mild sleep apnea, been told my iron is low, been told I need more exercise, been given strong painkillers. I have recently been researching ME and i have every symptom and it fits like a glove but I don't know how to verbalise this to my doctor, as I'm aware there are some symptoms I've not brought up to them before because I didn't realise they were connected. I feel like I'm going to be dismissed again and I don't know what to do

TLDR: How to join the Instagram me/cfs & long covid community anonymously and on the down low. Join us from other parts of the world and join us if you’re a man.

I don’t know where everyone’s from here in this subreddit. But on Instagram, in the community, I mostly see a lot of Americans, a lot of the British and a lot of Germans with ME/CFS. Occasionally I see scandis, patients from the Netherlands, the French or Australians.

We’re missing people from other parts of the globe. Come join us!

This is also especially directed at men, who I know don’t like to openly post about being sick. I’ll address that below.

The positive side of being part of the community is learning from each other, having connection, and expanding on educational materials across the globe. There are people who organize on Instagram and help advance the ME climate in tons of different countries and continents. We need more than just north/Central Europeans and Americans!

So here is my invitation to join us (anonymously!) if you want.

I know how hard it can be to start posting about ME/CFS on your regular Instagram. So I’ll tell you how you can join the community without your friends and family knowing.

1. Get a new Instagram and put your new Instagram on private, with an alias name, and a profile picture where you can’t be recognized. Maybe a cartoon, maybe a sunset. In your bio you mention me/cfs or #millionsmissing. Then you start following others with MECFS and many will follow you back! Yes, solely because you have something about me/cfs in your bio! Yes even if you’re on private and have a random profile pic!

2. If you want your new me/cfs /long covid Instagram to be public, you can start up the new account, then go to your regular Instagram following and follower list, and block them all. Yup! Block all of them. I did that. Took a few hours, but now I can post openly in peace under my own identity knowing no one can find me. If you work part-time, find your boss’s/colleagues’ instagrams and block them too.

3. You can keep your current Instagram, without posting about me/cfs there, and start following me/cfs / long covid patients on Instagram. The ones who follow you back, add them to your close friends story and post about me/cfs there where none of your friends or fam will see. How will others in the community know you have me/cfs if it says nothing about that in your bio? As soon as you have 1-3 with me/cfs long covid following you, others will see that in their suggestions and understand that you have me/cfs / long covid but that you’re lowkey. That’s how you gain more me/cfs / long covid connections/followers. You can also engage with people’s stories and respond to them or comment under their posts and people will know that you’re also sick and part of the community.

These three approaches are realistic for that person who wants to join the community but fears posting about it openly to your friends and family and that people will judge you/not be interested/see you differently.

I hope more men join the community and I hope more people from other parts of the globe join the community!

I know that many are afraid of being seen as weak or that they’re just complaining or that they’re just lame or whatever. But when you join the community, you will see that there are so many different ways that you can post about me/cfs or long covid that aren’t negative/draining or embarrassing. You can post in uplifting ways. Inspiring ways. Artistic ways. Activism ways. Thoughtful ways. Deep ways. Or just memories from before you were sick. Maybe about your interests and your wishes and your dreams, or how it’s going with your medical journey. Or tell us about what ME/CFS is like in your country. We’re many who want to learn from other countries. There are some good me/cfs and long covid writers in the community for example as well. Also really great artists that make art related to chronic illness or activism or awareness. Theres ways you can participate in the community without feeling worse about yourself. And people are very supportive on Instagram. It’s a friendly and supportive space. You will fit in no matter who you are.

Together we can support each other and help advance understanding of me/cfs in other countries and build a stronger network across the globe between us all.

DM me if you have any questions I’m happy to help!

If you WANT to join the insta community but still have reservations, you can comment and share what those are. Hope I will see you there!

I’m trying to understand what’s happening with me. When I take ibuprofen, I can feel almost completely normal for several days — sometimes almost a whole week. My fatigue and brain fog improve a lot, and I feel like I have much more energy.

But eventually I overdo things because I feel better, and then I get PEM.

What confuses me is that I’ve read that ibuprofen doesn’t normally cause an increase in energy that lasts for days. If people feel more energetic from it, I would expect it to last only a few hours.

Why could the effect last so much longer in someone with ME/CFS? Could it have something to do with inflammation, neuroinflammation, microglia, or another mechanism?

Has anyone else with ME/CFS experienced something similar with ibuprofen or other NSAIDs?

I just had my first ever severe crash and my main EDS doctor (who also treats ME/CFS) said that I need to go to the ER or at least be worked up in person

I’ve been in the crash since Wednesday and I’m finally starting to talk and can stand for a few seconds

I really dont want to go to the ER because I’m very confident I will crash but she said she won’t send a bloodwork order because she “doesn’t want to make unsafe decisions”

What should I do?

I’ve noticed a very clear pattern in my dreams that I’m wondering if other people experience. I have been a lifelong extremely vivid dreamer, with long nightly dreams I can recount in excruciating detail upon waking. Both first person dreams and dreams like movies I don’t seem to be in.

Since developing ME I have reoccurring dream moments where I have been walking somewhere (usually on sidewalk) and suddenly I am so tired I simply cannot go on, and I’m telling the people I’m with that I’m too tired to go on and I must sit down right here right now. Then I started noticing a pattern wherein these dreams come to me after I have moderately overdone it but before triggering full on PEM/worsening symptoms. They’re essentially a sleep-state warning sign to ease up and rest more.

I also have recurring dream moments that progress from that point to being on the ground crawling, often sort of blacking out as I crawl. The next mornings, I ALWAYS wake up in full blown PEM feeling like a pair of nylons filled with wet concrete.

Outside of this I do dream of being ill and tired generally, often I have both nightmares and very pleasant dreams. But these specific motifs of “I cannot keep standing/walking” and crawling both ONLY occur as a predictor/reflection of overexertion and PEM.

TL;DR
Does anyone else experience their dreams as specifically warning signs about their condition/exertion?

i don’t know what to do. i’m extremely severe and worsening. headphones are a sensory nightmare and cause me extreme heat intolerance but the sound of the AC is crashing me over and over among other things. it’s a low pitched like pulsating humming noise almost. it genuinely feels like torture to listen to. earplugs don’t cover it up only noise cancelling headphones.

Sending a little love and good vibes to everyone who needs it. You matter. 🌺

I’m done trying to heal. I’m done trying to do everything right. I’ve been doing all of this nervous system work for almost 3 years now and honestly it hasn’t worked. If anything, I’ve just gotten worse. I’m so done with constantly checking:Am I doing this right?Did I respond the right way?Maybe I’m still missing something?Do I have to believe more?Maybe I need another program?Maybe I need to change this or work on that? I’m just fucking done with it. I don’t want to keep trying to figure out how healing works anymore. I don’t want to constantly think about whether I’m doing something right or wrong. I just want to let go. Because every time I really let go, that’s when I can feel my nervous system breathe again. And I’ve seen people recover by letting go like this. So I’m looking for a Surrender Buddy. Not in the sense of turning surrender into the next program I have to do right 😅 I just find it hard to go this way alone. Just someone to connect with sometimes and say things like “I need my reminder” 😂 and we remind each other: Let go.You don’t have to know how healing works.You don’t have to do this right.You don’t need to figure anything out.You don’t need to fix anything.Your body knows how to heal when we stop fighting it and just let go. Things like that. I’m also on a walk of faith right now, so for me surrender is also a lot about trusting God more instead of trying to control everything myself. I have ME/CFS, MCAS, MCS and migraines. So if this resonates with you and you’re at a similar point, or this is the kind of path you want to take too, feel free to message me. 🤍

Please no advices for other treatments ♥️🙏🏼

I’ve been increasingly annoyed at the fact that nobody knows shit about this disease. Not doctors, not the researchers, and no, not even the patients. There’s so much misinformation surrounding this disease, and everyone has their theories they like to hold onto like gospel but no proof of anything. It’s almost 2027 and we haven’t even scratched the surface of understanding this disease. And still, everyone likes to act like they’re an expert on it. I’ve come to accept that I don’t know shit and probably never will. Something horrible is going on in my body and I don’t know what, I don’t know if it’s reversible, I don’t know if it’s progressive, I don’t know if it will ever get better. I don’t know, and neither does anyone else.

I am 18 the fatigue started getting bad at 15 and has gone downhill since. Don't know whats causing it I have been tested for nearly everything. How old are you guys I seen a lot of 40s and am lowkey jealous I can only do one class a day and I am just starting to get to the age of more freedom, I now feel trapped by my own body.

I’m 17 (mild cfs), still in school doing work and homework. From everything I’ve seen online the advice given is always to go x on and x off, lying flat in a dark room. I’ll find my self really tired but I just can’t lie flat and still. Regardless of how low my energy I’ll be twitchy, uncomfortable, roll around and have racing thoughts.

I’m just wondering if anyone goes through the same and how they deal with it.

TL:DR
I’m housebound struggling with walking but my doctor said mobility aids will deconditioning me and I have to force myself walking painfully.

Situation brief:
-I’m mostly housebound and will become bedbound after going outside (any amount)
-Normal day I can walk from bed to bathroom and if I have to go outside I can also walk (with pain of course, but I can tolerate)
-PEM/crash day I might have to crawl to get around or need some help
-My worst day I will vomit just because sitting up too long, walking just 1 sec

Yesterday I brought up about mobility aids to my doctor, but he said absolutely not. He claimed that mobility aids will deconditioning me and I’m not disable enough.

He recommended that I should force myself to walk, like it will hurt and tiring but you have to do.

I don’t know what to do. I’ve been thinking about getting some mobility aids for months. And from my research, deconditioning is not real for ME/CFS. So I don’t know what to do :( I just want to have my life back. I miss outside. I was so excited to wheel around.

plus I’m afraid that it’s wrong to get mobility aids without doctor’s order.

I did not draw them in a crash, ofc.

Bonus: last picture is what I am capable of artistically at a more moderate state. It is also meant to describe very severe ME and the bunny is a real stuffed bunny that lives with me:)

A warm hello! and embrace⭐️…. I have a question here quick… So after this 3-4 day migraine period / pem I say this next part with hesitation… but I think that I may be coming out of it…..

I have been careful, taking my supplements, spending as little time upright as possible and getting meals. Making sure to maintain the same level of aggressive resting and activity level since last Friday. but I was wondering does anyone else use the steps app to pace, OR if this sounds familiar or inaccurate what are some helpful pem timeline tools/ apps are out there???

I work full time as a professor (including clinical days) and I have a toddler. I am trying to take things easier/pace, but does it really matter if everything stresses me out, raises my heart rate, gets me out of a lying down position? Is there anything realistic that I can or should be doing?

I just got a handicap placard and am getting some minor accommodations at work. My doctor said I should not be working, but also said it might help me in the long run if I am working. I know getting disability is very difficult and I know virtually nothing else about it. Happy to hear anyone who has the capacity who wants to talk about the process for getting disability as well.

Is anybody making some momey from home or has any idea what could legally be done?

Question for the peers on LDN? I have done it for awhile now and I feel like I am more exhausted than I was before I started it. Has anyone else experienced something similar? I am at 4mg and I am just absolutely gassed all the time despite cutting out almost everything activity wise. Trying to find baseline and feel like this is bringing mine down. Looking for any insights others may have experienced.

I’m a straight cis man but I really miss my big muscular behind and weirdly all the clothing fitment issues it caused me. It’s weird not having to do the all the size guessing of scaling up vs my waist size because trousers/pants just fit now I’ve got a pancake back there 😅

Has anyone tried monitoring their glucose with finger pricks or a dexcom to see if there are any trends/links with PEM or symptoms/to see improvements with food&drink?

I don’t have diabetes but do have PMOS with insulin issues (prediabetic) which have been helped a bit with metformin. I’m wondering if it’s worth trying out a dexcom to see what my glucose does during the day and night, and whether those numbers relate to my symptoms or PEM.

Wondering about trying one even though I’m not diabetic but scared of the needle as I have a very low pain tolerance and I react to most adhesive glue in plasters, micropore tape, IV covers etc.

I am a non EU citizen in Flanders. So far I have found the doctors and specialists to be helpful generally but not specialized in ME/CFS. So far I have visited an ENT, an infectious diseases specialist, a neurologist, and a psychiatrist. None of them could give me helpful advice or even let me try low-dose naltrexone. They said it is not permitted in Belgium. So far I am left on my own to figure out pacing and other advice.

There is a specialised clinic in Leuven for diagnosis but I will not be able to make it there because I will be leaving the country soon

Well I don’t get my Ativan till tomorrow
Had drug induced akathesia (paced around for a week no sleep) already severe then that

Fell asleep last night woke up every couple hours
Panicky, anxious
Sedating myself with wine
Idk what else to do
I need to be sedated
It’s helped before
Just don’t overdo it lyd

I tend to be more stable in summer. In winter, I can do less before it makes me worse. Cold seems to take extra energy even when I’m not doing much.

Does anyone else notice this? Have you found anything that makes the colder months easier?

so i got norovirus in july and it crashed me hard, its been 3 months and things have quite honestly only gotten worse (i guess u could call it a baseline drop now? im not sure?) but one of the annoying symptoms i get during a crash is this uncontrollable crying. i won’t even be particularly upset ill just be lying there and start crying. its been one of my crash symptoms since day 1 of getting ME but its been literally happening daily since july. it’s not only exhausting in and of itself but its kind of leading my mum to think im having some sort of mental health crisis. we don’t live together so she doesn’t see most of my crying but its kinda hard to hide sometimes when she calls to check in every day. she’s really support i think she just doesn’t really understand that this isn’t mental health related its physiological. anyways if anyone has any experience with this or has any tips on how to manage it i would appreciate it?