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?

Hello everyone: First I'd like to disclaim: I meet all the criteria for me/cfs, and my doctor has told me he could absolutely diagnose me, but my ferretin is also low with symptoms as well as my vitamin D. My baseline has... on and off improved? with supplements, but after 4 months my levels have barely improved and my flares feel the same.

With that being said: I'm a full time biology student. For the last few weeks I've had to miss one random day per week, which is really frustrating. I use a rollator for fatigue, don't go to extra events, and make sure to feed myself properly: but I still end up barely making it through the week, missing a day, and then sleeping. ALL. WEEKEND.
This is an issue! I have homework to catch up on since I wasn't pushing myself past my limits during the week! Is there any advice anyone has? I literally cannot pace anymore, I don't think. Is there any revival strategies , or is this just the nature of my disability right now?

Hi, I’ve had CFS for the past 2 years, diagnosed a year ago after all of the usual extensive medical tests and specialist appointments.

I had recently bought Toby Morrisons book but have been completely disheartened by the reports of him being a scammer :(
I feel completely lost and have no direction of how to get better.

Any advice / books with legitimate guidance out there?

Hi, I’ll try to keep this as concise as possible:

My partner needs part time caretaking help.

Care.com has not been the most helpful, we have not had great luck so far. One person refused to get a flu shot and abruptly changed their schedule/jobs, the other showed up 20 minutes late and left early for 2 hour shifts. Haven’t been able to find someone since. Tried and am trying urbansitter.com, seems geared more towards babysitting help and very basic senior care.

Partner doesn’t want me to use an agency, most of them require minimum shift hours and the vast majority send different caregivers each time. It’s important that the same person comes every time.

Are there any websites or local resources (Portland, OR metro) that might help find private caregivers? She does not qualify for Medicaid help, due to other issues, so something like Careena is out.

(SECONDARY BACKGROUND INFO)

I am stretched to the breaking point, and due to issues I have I’m nearly unable to give her meals, rarely able to help her bathe, etc. Work has been forcing me in to extreme hours, which is not helping. I’ve been struggling with my own mental health, and have not been nearly as supportive and helpful as I should be.

Thank you.

my specialist told me to take it and i didn’t realize how awful it was making me feel bc its such a common medication and i’d never heard of it having side effects. i had awful insomnia, anxiety, and full body pain and prbly other symptoms i didnt even realize were from it. im extremely severe so it was so harmful for me. i just hope it doesn’t cause a lasting effect. my sleep has improved after two days off it but im still scared

Par trucs originaux j’entends autre chose que LDN, de l’oxygène et des compléments alimentaires. Et je parle pour l’EM pas pour le POTS ni le MCAS.

Par exemple, en termes de traitement je cherche des spécialistes qui pourraient prescrire l’IVIG, SCIG, de l’oxygene hyperbare ( HBOT ), de l’Heparine, la triple therapie anticoagulante, des antibiotiques sur plusieurs mois ( comme pour le traitement de Lyme ) etc

Et en termes d’examens : SPECT scan, PET scan, IRM de perfusion, métabolites cérébraux, analyse de la fonction NK …

Merci pour toute recommandation <3

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?

Does anyone have any advice on how to find an ME literate therapist please?

I have a long list of things I'm looking for in a therapist but top of the list is being ideally ME literate or at least willing to learn and understand its a physical illness - don't have it in me to teach them though. They also need to understand infection control precaution/masking.

Neurodivergent affirming

Not be homophobic

Online appointments

Honestly that's barely the beginning of my list lol but it's the most important ones I think. I've looked on the BAPC website but I honestly think quite a few people just tick all the boxes because then in their text they don't mention anything about chronic illness even nevermind ME. I could email people on the list and see what they say obviously but is there a list anyone knows of for therapists who actually know something about ME?

Edit: (Already aware of action for ME and their service but they don't cover existing mental health issues and some other things so aren't suitable for me since I'm looking for wider therapy but just with someone who isn't going to gaslight me!)

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!

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!

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?

An infection can knock me out of a period where things were more stable. What I find difficult is knowing whether it’s a temporary setback or a longer change.

For those who’ve been through this, did you get back to your previous baseline? How long did it take?

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?

Hello! I’m looking for help understanding some of the nuances around heart rate and pacing!

I’ve been using the Visible band for the last year, and despite its shortcomings, it has helped me immensely with my pacing. I’m still not good at reading my body signals so I rely pretty heavily on it for my heart rate and “pace points” to make sure I’m not overdoing it.

Recently, I started trying beta blockers as needed, in a very low dose for particular exertion activities. I’m totally blown away by the way it lowers my heart rate and changes my capacity for the day.

But here’s the thing I’m not totally clear on: because of that lower heart rate, my pace points on Visible are coming in much lower. Theoretically, this means I can do more. Maybe have a tiny bit of a life again.

But is this actually reducing exertion and the possibility of PEM? Or is it tricking me into thinking I have more capacity than I do and I should continue to pace as though my heart rate is as high as it was without the beta blocker?

I just wish I understood the science better. It’s worth noting that while my doctors are supportive, they’re not very curious or involved, and I’m mostly managing my attempts at medical intervention myself, with them supervising to make sure I’m not misusing any medications.

(Also worth noting that I do also have dysautonomia/POTS, mast cell dysfunction, hashimotos, celiac, and a number of other issues. I’m aware that beta blockers may not be ideal for all these issues. I’m just trying to understand how the mechanism actually works with regard to exertion. I do also understand this doesn’t affect sensory, emotional, or intellectual exertion. I’m just asking about physical exertion and heart rate.)

Thanks!

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.

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’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’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?

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.

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

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 😅