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So that was one horrible week. My daughter was ill & I had to set alarms trough the night to check her fever. The most interesting thing to report, is that I really went badly over my limits, and I’ve not had PEM that badly. Or at all. I was ill over the weekend, so that doesn’t count as PEM...

Well, I don’t know what else to tell you. It’s not good in my case and exercise makes it worse. Taking 10.000 steps isn’t within my options. I couldn’t walk 400 meter.

it’s very difficult to get here in Belgium too. Prof Comhaire is one of the only dokters who gets it. It’s nice to know others have tried taking it too. It seriously needs more research. It’s one of the reasons I’m sharing. I personally think (subjectively) that I made a 50% recover over time...

I decided to stand on scale.. Last time I weighed myself, (2-3 weeks ago) I was 83kg. I’m 170cm, so BMI was 28,7 Now I’m 77kg. BMI is now 26,6.

As far as I understand, yes, still same ingredients.

thank you ^^ She’s quite a joy but I really wish I could still breastfeed her. He does check up on me, every 3-4 months a blood check with some standard stuff. Every half year usually a echo of my thyroid, but that’s cause I’ve also got hasimotos. Last time when I took this stuff for 2 years...

i know he looks into heart & lung function... I’m not home now, but I can try to dig up those papers. I know he looks at heart rate and how my lungs are doing.. He wrote down on the papers what changes every year. This is what he does: (intended to reach your peak heart rate and oxygen...

400mgr today is Friday, now 4 days on the medicine again. I noticed I have less issues with stairs. I’d slow down before making 1 flight of stairs and need to stop to catch my breath. This morning, I noticed I just walked up without needing to stop to catch my breath. I still felt my legs hurt...

It was a doctor (separate one) who did the bike test with the mask and heart monitor ect.. I’m not sure how it’s called in English. So I would assume it’s objective as it is a standard medical test. Edit: I tried to find him, took me a while. Dr Lambrecht is the doc who I see who does the bike...

Hello. I’m not sure what the right category was, but I wanted to share my experience with Prof Comhaire’s sodium dichloroacetate treatment. I’ve been sick since I was 16. I had an (really bad) EBV infection. A year or 5-7 after that, a hospital specializing in CFS/Fibro checked me out and...

I saw him today, for anyone who’d enjoy an update. I’m starting that medication again tomorrow. (Stopped breastfeeding) He’s done researching (the guy’s in his 80’s) & pretty much just wants to see patients and continue helping us. I’m currently pretty weak so I’m curious to the effect once I...

the context is a parenting group who wanted to help out because I said I’m losing motivation to do stuff because I always run into my body being to ill to keep the house at a certain level of clean.

trousers. The stuff people see, the outer layer of clothes.

I’ve read through the whole tread, and if it’s alright, I’d like to cut into a new topic. Clothes. How, where do you get pretty and comfortable clothes? I’m from a tiny country & rarely buy my own cloths. I have tons & tons of hand downs from family. I have a bulking out closet that I’m trying...

Soo I wasn’t quite sure where to post this, but I figured here was the most appropriate? https://www.strugglecare.com/ this website was advised to me to use. What do you think about it? I’m not sure how I feel about it.

I loved reading this! in my own relationship, my partner has ptsd, and eating disorder, with me having cfs, & some more shit. He sees me as equal: I actually fix his emotional issues (mainly by not rejecting his emotions & giving him space to experience them) and he helps me psyically. It’s...

I would be curious to such a study. My grandfather couldn’t handle alcohol very well, and my mom has that red wine (is that histamine?) allergy. So me being giggly after half of glass of wine could be that, or related to CFS. Either way I couldn’t drink before I got sick, so no way to know the...

yes, he’s very well known for that still. I’m from the same country as him & saw him once. He’s mostly known for being expensive.

sorry forgot to adres part 2! Bainfog. No, as far as I know he’s trying to bring it out trough a pharmaceutical company. He doesn’t have the resources nor the large enough patient base. He would need resources and people. And he’s just met with too much resistance in general. He tried to get...

thank you! yes, it’s made a huge difference. I had to stop after a year bc I got pregnant and I haven’t been allowed to start up again till I stop breastfeeding (my daughter is 13 months now) It was the last doktor and treatment I was going to try. So I actually didn’t expect this to work. I...