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Donated :thumbup: So relieved and grateful that you’re continuing to work on this @dave30th

@Hutan Thank you so much for that post. I set some of my best times in swimming competitions a year or two after I got ill, even catching up to some of my healthy team mates at events they had always been better than me at. I guess my ME would be considered mild at the time, but my burden of...

"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience." I think it's weird to highlight what you did not do, if the only point your trying...

Recovery Norway always repeat the mantra "Listen to those that got better", while undermining those patients that share their negative experiences with LP by saying we didn't want to get better, or weren't commited enough. I had a psychologist, which had a collegue that was a Lightning Process...

@Samuel I thought this thread was very interesting, because ME patients often have many symptoms that doctors and researchers are not interested in, and therefore might not get recorded anywhere. If it weren’t for patient forums like this, I wouldn’t know that many other patients also get a...

Taking that metaphor that ME/CFS patients have been using for ages to explain our illness, and then saying it doesn't apply to us. I can't believe it. If they are going to use our ways of explaining our experiences, why can't they also believe our experiences? Explaining the experience of...

Thank you for making this topic @Andy . It’s something I’ve been thinking about lately. I’m not sure which of these might be mentioned in litterature, but it's symptoms medical professionals seem very puzzled by when I mention I have them, so they seem to be less talked about symptoms I think...

I haven’t found any workaround, just wanted to say you’re not the only one. Mindfulness meditaiton is unbearable for me. Brainfog is my most severe symptom, and the effort it takes cognitively to be that engaged with my thoughts is the fastest way to make myself crash. It’s like a work out for...

Thank you, that makes sense. I think ME nurses would make an incredible difference. Great submission from S4ME :thumbup:

Same here. And difficulty breathing because my muscles feel to weak and fatigued. I think it’s strange how there’s so many symptoms I have with ME, that other patients talk about too, but no doctor ever talks about and just seem confused when I bring up. Not even the «specialists» or the...

I hope I can start laughing instead of crying next time. Somehow this thought made encounters with medical professionals seem a lot less scary.

I think LP being endorsed by doctors and people in posistions as Helland, Fattorp and now Garner, is the reason the fad has been able to stick around for so long. It makes it so hard for patients to escape this mistreatment. Parents will want to send their children on LP because of these high...

Same. It was impossible for me to take myself seriously when saying things like "I'm a genius" and "I'm as energic as a gazelle running over the savannah" (examples from the instrucutional CD we were given). I know I'm not a genius and I think that self awareness is a good thing

People are resistant to subject patients to LP because it is a really weird, nonsensical self help course, because the practitioners have no compentence for treating sick people, the practitionners are abusive to the patients (even children), because patients report becoming suicidal because of...

That's the saddest part

Thank you so much to the people that helped make this happen. This is so many steps forward, I couldn't have dared hope for this (after all we've been through). I'm so relieved by seeing Lightning Process mentioned as something that shouldn't be offered. I read the 2007 guidelines to compare...

Shaming, mistreatment, prejudice and abuse has been the defining experience for me of having ME. It has always been a heavier burden to bear than the illness itself, and the illness is already a heavy burden. If I were to tell an alien about what having ME is like, I might forget to talk about...

same here. i always get burning in my legs with PEM, even from mental exertion. in my calf and thigh muscles and the bones it feels like, especially the knees and ankles. but not anything in my arms or uper body that I notice. extra brainfog and burning legs are a consistent duo for my PEM, no...

Donated. It means so much that you are doing this @dave30th. Seeing your work and knowing that we have someone like you that cares about our situation has been such a comfort for many years now.

In the beginning when I was still working out, and still was in good physical shape from before I got ill, I was surprised by how extremely out of breath I got from walking the stairs at my school, along with lactic acid building up very quickly. I still get out of breath like that, and while...