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This is such an interesting question. I had a very weird experience once, which made me wonder if there is an off switch. Two years ago I had major surgery to remove a benign breast tumor. A couple of hours after the surgery, I was in my hospital room, resting in the bed and SUDDENLY all my...

I was misdiagnosed for a decade, until I finally got a referral to an ME-specialist, who immediatedly recognized what I had. Until we have some sort of objective test for the disease, there will always be people like me who have ME/CFS but get bounced around with incorrect diagnoses, and people...

I think the same will probably turn out to be the case for people with bona fide ME/CFS. They will have a common underlying mechanism, but with some variations.

At the ME-clinic where I received my diagnosis before it was closed down, they gave patients B12 shots on prescription. I know several people who say the shots help them tremendously. I could not take B12 shots as they caused me severe palpitations. But the first time I took a shot, I had an...

That’s a very good point.

Maybe DecodeME will shed some light on the matter. But so far, from what I’m reading, it is clear nobody really knows.

That’s the part I struggle with. How can different biological mechanisms create the same unique characteristic, namely PEM? To me it makes more sense that we all have the same underlying problem, but added to that, we also have more ”personalized” symptoms. But yeah… we can only assume things...

This conclusion shows that ME/CFS is a huge burden for families and society, who become responsible for supporting the individual financially. This alone should make politicians understand how urgent it is to invest into research.

I am wondering if someone here would be kind enough to explain what ”subgroups” means in the context of ME/CFS. I hear the word mentioned very often, but I don’t get it. I understand that patients fall into categories depending on what triggered the disease, but what I don’t understand is why...

Sad news.

Sasly, I think all ME/CFS patients suffer some trauma due to disbelief and gaslighting by doctors. I remember vividly during the first years of my illness, waiting at the doctor’s office and shaking because I was so stressed by the fact that, once again, I’d have to talk about my symptoms...

I might be cynical, but I don’t believe CBT helps at all. Not even in coping with the disease. I did CBT for 4 years when I first got ill in 2011. I did one on one therapy with a psychologist, I did group therapy, I did a course on stress management and one on mindfulness. I had a brilliant...

I hope it’s ok to post this, if not, please mods be so kind as to delete it. I saw this on Twitter.

The 1177 healthcare page for my municipality states something like ”a few studies show patients improve with physical exercise”. This is never going to end, is it?

As someone who has been slowly and steadily deteriorating for 14 years I voted ”no”. I think the effects of not being able to recover are very obvious once you become severe. Something as simple as a shower sitting down can permanently lower the baseline. To me that’s evidence that something is...

I did not meet another patient with ME/CFS for more than a decade after becoming ill. I was shocked to discover other people characterized that feeling as ”poisoned”. That’s how I had described it to my friends and family for years. It says something about this disease that people who’ve never...

The article is a disgrace. I can’t believe how tone-deaf he is. He obviously hasn’t bothered to read and understand the criticism. This guy should get fired.

They did an amazing job! I really can’t praise them enough.

I had no pain for the first 10 years. When I became severe, overnight, from two very big consecutive crashes, I also started getting pain. My pain is exactly how you describe it: a burning sensation in the muscles. During PEM I get bad muscle pain all over my body, but the thighs and arms are...

I look forward to seeing this paper published. I listened to an interview with Prof Bergquist and he said something interesting: they are not only trying to find out if LDN and Mestinon work for some patients, but also why. I think that’s exactly what we need, seeing that there are such...