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I had undiagnosed ME for three and a half years BEFORE I became convinced that the fatigue was partly psychological. I was convinced I was recovering when I was running and pushing myself to work full days (I am a writer and musician and didn't have to do it which makes it so much harder to...

My birthday is coming up and I'm wondering what you lot think the best charity would be to ask my loved ones to donate to - the ME association? Preferably one that funds biomed research.

What we need is physicians like this sticking their necks out and publically countering this narrative in the media and among their colleagues rather than worrying about the damage to their reputation.

Thank you. And I agree. More professionals need to challenge these narratives so the public can see it isn't a universal view.

My heart sank when I saw his name. Very disappointed in The Atlantic for publishing him. The worst thing is that every time I read something like this I start gaslighting myself.

https://www.theatlantic.com/ideas/archive/2022/10/long-post-covid-symptoms-mild-cases/670469/ The Atlantic hedging it's bets after the brilliant Ed Yong article from the other day...

Yes I worry about that. I could not tell the difference when mild and undiagnosed and jogged/worked myself into a moderate and largely housebound state, which declined to severe after Covid months later. I had had ME for over three years at that point so it concerns me when pwLC think they can...

I completed the study today and wasn't chosen to take part. It is quite disappointing on an emotional level even if intellectually I entirely agree with all that's been said. I guess it's just a consequence of years of uncertainty and gaslighting by docs. But other than that I am hopeful about...

Slow brain day here too!

Just to clarify I absolutely encourage everyone to take part, in case that wasn't clear.

My only concern is that by excluding people with common co morbidities (if that is indeed what is occuring), is there not a chance that Decode will end up not studying a significant cohort of ME patients and therefore exclude them from future biomarkers/treatments?

About bloody time!

Folk psychology becoming increasingly more deranged...

I agree with a lot of what you're saying here, but just to clarify I meant that we as ME patients might do better to counter the 'whiny negative attitude' narrative and use it to raise awareness of how awful ME can be, as opposed to getting sucked into the argument around this other character...

I wonder if this might not be approached as a teachable moment in regards to why people with ME tend to have a more bleak outlook than suffers of MS or amputees or what have you. Maybe explaining how ME takes away the ability to do basic things/hobbies, see family and friends and the low...

I found this article a little upsetting, as someone who had a similar quality of life to Khan Harris for nearly four years. I then became bedbound after being convinced my fatigue was partly psychological and trying to exercise my way out of it, then catching Covid a couple of months later. I...

https://www.bbc.co.uk/programmes/articles/3gxJbg6f1FDv4tzrbtfp1Y3/how-your-expectations-can-transform-your-life Steam came out of my ears when I read this. Literally magical thinking, as far as I can tell.

Unfortunately I think it was a closed conference (researchers only). I really want to know what he said (if anything)!

This happened to me after worsening to severe following Covid. Cardio recommended intense physio... The rehab team called me and said no way are we putting someone with LC through this.