Search results

I am sorry it hasn’t improved your OI, but good to hear it helped your heart valve.

@Arnie Pye I am sensitive to meds, so I plan to star low as well. The 1,25 mg pills cannot be broken into two (they don’t have a middle line), so I’m gonna have to use a pill cutter.

My doctor prescribed me Bisoprolol 1,25 mg for orthostatic intolerance. I have no problems with my blood pressure, no palpitations and no other issues with my heart. I’m bedbound 95% (I manage to walk to bathroom and fetch food from the kitchen on good days). Does anyone know why Bisoprolol...

I need to have many pillows to support my body and a duvet all the time, otherwise I feel like I am ”falling”. I use a light, very soft cotton duvet that has a little filling.

* Trigger warning - please don’t read if you find the subject of this thread distressing * I don’t consider it a ”kindness”, but a fundamental human right. Before I became ill with ME/CFS I had no strong opinions about suicide or assisted suicide. Since becoming this ill, I have thought a...

Congratulations! Thank you to everyone involved. I can’t wait to watch it.

Thank you for sharing this. ”Enduring” by Niko S was deeply moving and it resonated with my own experience. It never ceases to amaze me how alike we are in our suffering, although we all live inside our tiny bubbles, disconnected from each other.

I wish they had adressed PEM in the abstract. Since PEM is the most debilitating symtom it is very important to know how staying awake more impacts PEM. If I don’t rest/sleep enough I get PEM. So for me, a medication that keeps me awake and gives me more energy one day, is useless if I get PEM...

The sad part is that while the couple were heavily advertising brain retraining, I’ve had many people tell me I have to try this as well. However, no one said anything when the husband posted that he did not improve and the method didn’t work. It just slipped by unobserved. What got stuck in...

No, none.

In Sweden there is a fairly famous influencer who advertised brain retraining. Her husband has ME/CFS and her Instagram is full of posts about the disease. They both publicised his journey with brain retraining in very positive terms. She even wrote they believed ”We will now finally get rid of...

”new recommendations for diagnosis, assessment and treatment of ME in Denmark will be drawn up” Very good news. I am keeping my fingers crossed that the recommendations will not say patients need CBT and GET to get better.

I am living proof that fear, deconditioning and avoidance have nothing to do with ME/CFS. I have been assesed by 5 different psychologists throughout the years. They all concluded I have no psychological issues whatsoever, no fear, no phobias, no problems. At the beginning of my illness I did...

I loooove coffee, I used to drink 1-2 cups per day, but since becoming severe, I am histamine intolerant and coffee causes a big skin reaction. I also get jittery in an unpleasant way from even half a cup. This study is missleading. People like me who are severe don’t tolerate caffeine and...

Very well put!

This is extremely dangerous. It’s what leads to lives being destroyed.

I was diagnosed with ”utmattningssyndrom” (exhaustion/burn out syndrome) for 11 years, before finally coming to Bragée ME-center and receiving the correct diagnosis: ME/CFS. I received treatment for burn out (CBT and GET) and only got worse. It was, and still is, a trauma for me to have lived...

”We’re running clinical trials in the US, recruiting 1,000 ME and long COVID patients to clinically validate these new diagnostic & therapeutic options” Anyone has any idea where we could find information about these clinical trials?

Such amazing, absolutely amazing news! He’s been to hell and back for so many years. (Upon seeing this, my first thought was ”Maeve”. )

This is exactly my understanding… They forgot ME/CFS.