Search results

Can only second this. Very coherent and moving.

Also goes after the effort preference bullshit propagated by Wallitt.

That FES organization looks a lot like the Dutch ME Stichting. The one helping out Rosmalen with her MELines project. I couldn't find any other organizations for FM patients in the Netherlands so far. Have emailed the ME/CVS Vereniging(good guys), if they know anything. But since that's run by...

https://fibromyalgie.nl/ found this website. https://www.fesinfo.nl/nieuws/gezondheidsraad-fibromyalgie-verdient-erkenning this apparently is the response of a Dutch FM organization. Their lukewarm response has me worried. They don't seem to recognize the danger of their disease being...

I've responded to their tweet. Does anyone in here know if FM patients are organized and if so, where? These guidelines have me worried for them, but they could also have implications for us as they are saying pain isn't the only thing they can treat in the BPS way.

Tramadol and cyclobenzaprine are contraindicated according to the summary because they have side effects and might lead to addiction. I don't know if this is sound advice, but it is followed by saying that non-medicinal interventions should be the first line of treatment. The way it's written...

The summary mentions that CSS is the dominant theory in the field. The theory might be able to explain other symptoms as well. The more I read, the more it enrages me. They mention that some interventions give some results. They also mentions that the reliability of the evidence is generally...

A sentence later they say that the BPS model is important to be able to provide good care. The Fibromyalgia patients are in for a very rough time if this continues to be the stance.

I think this might track with some of the slides Rob Wüst showed on Dutch TV after exercise. I thought a lot of the muscle cells pooped out after exercise as opposed to healthy controls. Would have to rewatch it though, and read this more clearly. Which I'm not up to atm.

I wonder if their posts merit an individual response where possible, or that it's better to look at the bigger picture and go after the flaws in BPS-research and the misconduct that occurred over the last 50 years or so.

Don't call us, we'll call you. *edit* in reaction to Gatchaman's latest quote.

It sorta reminds me of how well prepared the LC people were when it came to getting government funding in the Netherlands. They even went a bit further, they had reached out to researchers and put in joint applications I think. So that it would reflect very poorly on ZonMw if they would go into...

Including Nath is only fair. He can hardly claim innocence in this as he's been there for the entire process and dismissed our worries from the very start.

Any knowledgeable patient would've told them using the Chalder scale is bonkers. I wonder if they had any patient input.

The lexicographer on British gameshow Countdown and on the comedy version of that same show. Also the reason I have a vague understanding of what a lexicographer is, someone that knows a lot about words.

Some patients might be inclined to give them the benefit of the doubt if the term they chose for this "phenomenon" didn't sound like it came straight out of a GET-manual. For me, appointing Wallitt when they started this study removed any such inclination.

This is just pure evil, plain and simple.

The default state of the psychosomatic field.

That's a nice summary and echoes my sentiments. I don't understand half of this paper or any others, but I did feel that most of the things mentioned were already done and done better. The effort preference bit sounds very vague and unhelpful so I'd immediately attributed that to Walitt as his...

Someone who does his job, in short.