Search results

Fund-raising is an art in it self and the amount of money raised doesn't correlate to the quality of work of a given charitable organization. I think we all have heard of multiple charitable organizations that are great at raising money, but are basically just squandering it. I believe in what...

Simon Wessely doing what he does best Anil and omar being social media savy as always :thumbup:

I agree. Really impressed by Emma. I'm always in awe when ME patients can be that outspoken. I also agree that it's important that we as a community start moving away from the physical vs. psychological debate entirely. It never has, and never will help us. Fight where we are strongest and...

Ah sorry! Worst part is that I have read the original article, but didn't even notice that this was just a translation x(!!! I was super confused as to why they would spend so much time interviewing Norwegian ME/CFS ''experts'' xD Honestly though, after reading the Danish translation this...

*EDIT* Seems like this is just a Danish translation of the original Norwegian article from forskning.no that videnskab.dk decided to bring. *EDIT* https://videnskab.dk/krop-sundhed/me-forskningen-er-fortsat-praeget-af-usikkerhed-og-uenighed Danish Article on ME/CFS I havn't been this angry...

Oh definitely. Guess who wrote this regarding a Lightning Process study? Yep. Sharpe. Sharpe clearly realises that relying on self-reported fatigue or functioning could be problematic due to potential bias. That being said he did also say that the Lightning Process study was... Setting...

Ah sorry! I did not know this. Thanks for clearing it up :)! Fukuda, ICC and CCC are though right? Also, bonus question. What about the original ME diagnosis by Ramsay? That was not a diagnosis of exclusion, right? Or was it :P?

I mean ME is criminally underdiagnosed, but if a lot PwME are actually false positives then that is really worrying. Would be really interested to hear more about this, because in the end ME/CFS is a diagnosis of exclusion, so how can they be certain that the patients don't really have ME/CFS...

The Danish recommendations for 'Funktionelle lidelser' by The Danish Health Authority which would also indirectly have included recommendations for ME/CFS have been delayed once again. They were supposed to have been released today the 22nd of May. Accompanied by a press release. The...

Thank you Emily and Solve ME/CFS Initiative for the amazing work you do for our illness. Really think you are going about things the right way.

Rigorous exercise does not halt dementia decline, study concludes Keeping active helps prevent the onset of dementia, but once the disease has taken hold, working out more does nothing to slow its progress Guardian article available @...

Wait, so Norway also treats patients according to the idea that patients suffer from false illness belief? Which Norwegian experts where they in touch with I wonder? Prof. Wyller lol?

Very true My annoyance was more with the ''CBT and GET may benefit some patients'' for which there is no evidence. No idea why I phrased it the way I did to be honest. Major brain fart.

Why is it always portrayed as if it's just a bunch of ME/CFS patients that believe these therapies to cause harm? The American CDC removed CBT and GET recommendations. Countless researchers, among them also psychiatrists, have also been critical of CBT and GET and assert that there is no...

I think we as a community have been treated so poorly that we just seem to be happy with whatever coverage comes. I hate to be a negative Nancy but I really feel like the coverage could and should have been so much better. ME/CFS isn't some completely uknown entity anymore. There have been...

Sadly, I have noticed this in the Norwegian debate as well which is a shame. The entire problem is the ''but some patients might benefit from CBT / GET myth''. Which sadly relies on the myth that PACE is able to show that some patients who have chronic fatigue, but not ME, might very well...

I am pretty sure that people who have been wrong about ME/CFS constantly for the last 20 years should not be considered experts...

Ah! I still tell people about that article when discussing the stigma of chronic illness because I thought it was such an interesting read. Good video!! She has over 200.000 subscribers, so definitely a good way to raise more awareness.

What Alem Matthees managed to pull off with his debilitating ME/CFS is truly an exceptional accomplishment. So incredibly sorry to hear about his deterioration, he deserves so much better.

While I agree that mistakes could be costly. I still feel that that it is best to be as aggressive as possible with advocacy. I feel the entire HIV-advocacy is a good example. Better to be obnoxious militant patients than to do nothing and worry about making mistakes. Especially because the...