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Jim Faas comments on 'renowned' PACE trial

Grigor

Grigor

Senior Member
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462
Location
Amsterdam
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Solstice

Senior Member
Messages
641
The comment from the psychiatrist underneath it is good aswell. He's basically saying: "Tempers are flaring over CFS. Usually that implies we don't know yet and where we don't know beliefs come in to play. Beliefs are undermined by non-believers and therefore must be fought. Something like that looks at play here."
 
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unicorn7

Senior Member
Messages
180
Grigor said:
A new blog came out with Jim Faas responding to Jos van der Meer. Very good.

https://translate.googleusercontent...og.htm&usg=ALkJrhit7ld97_WNnvE30zSUiHSQhxr-Fw

I'd appreciate it if people could leave a thank you message at this tweet so the magazine knows we care. We need to make a lot of noise . Thank you for that.

https://twitter.com/i/web/status/911212247678042112
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This is sooo good!!

I was checking the comments on that horrible "stalker" story:eek: He means you, right? Now we know where the militant ME-patient stories come from:rolleyes: if you interpret your exemplary polite and well written (but critical of course) comments on his blog as "stalking"....:wide-eyed:

Why do they give that guy a place to write on that website? When you can speak that condescending about patients, you should not be practicing medicine, let alone write blogs about it...

Already a third blog of Jim Faas:D:D. Made my day:D I'm very excited about this!
 
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Solstice

Senior Member
Messages
641
unicorn7 said:
This is sooo good!!

I was checking the comments on that horrible "stalker" story:eek: He means you, right? Now we know where the militant ME-patient stories come from:rolleyes: if you interpret your exemplary polite and well written (but critical of course) comments on his blog as "stalking"....:wide-eyed:

Why do they give that guy a place to write on that website? When you can speak that condescending about patients, you should not be practicing medicine, let alone write blogs about it...

Already a third blog of Jim Faas:D:D. Made my day:D I'm very excited about this!
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Where can I read that stalker story? Nevermind, found it.

*edit*
Poor little fella.
 
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Esther12

Esther12

Senior Member
Messages
13,774
Solstice said:
https://www.medischcontact.nl/opinie/blogs-columns/blog/-nachtmerrie-.htm
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Thanks. Maybe I'm being unfair because of problems with the translation, but the Dutch defenders of PACE/BPS/etc seem noticably less bright than White/Crawley/Wessely/etc. My only hope for humanity was that Britain was unusually terrible... please don't let us be better than average!

I think it's a bad idea for @Mark Vink to promote his nomination for the Maddox Prize in the comments, when all it takes to be nominated is for one person to nominate you. It's like when people promote having being nominated for a Nobel prize, when a nomination doesn't really mean anything, and can be taken by some as a warning sign.
 
S

Solstice

Senior Member
Messages
641
Esther12 said:
Thanks. Maybe I'm being unfair because of problems with the translation, but the Dutch defenders of PACE/BPS/etc seem noticably less bright than White/Crawley/Wessely/etc. My only hope for humanity was that Britain was unusually terrible... please don't let us be better than average!

I think it's a bad idea for @Mark Vink to promote his nomination for the Maddox Prize in the comments, when all it takes to be nominated is for one person to nominate you. It's like when people promote having being nominated for a Nobel prize, when a nomination doesn't really mean anything, and can be taken by some as a warning sign.
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Oh no, it's just as bad here. Bleijenberg, v.d. Meer, Keuter are just as bad as their British counterparts.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
I was very happy when the team of Prof. Sch. at the Charite published a general article about CFS (they don't use the term ME) this year. But it turned out to be a translation of an article (or medical book chapter) by Bleijenberg and van der Meer. It's horrible (Fukuda criteria, Chalder fatigue scale, CBT (its evidence-base is mentioned), graded activity, less focus on symptoms etc). This is now one of two general articles on CFS on the website of the Charite.
I think van der Meer is quite popular in Germany (have read several times about him, of course mainly from his German PBS-colleagues).
 
Grigor

Grigor

Senior Member
Messages
462
Location
Amsterdam
Joh said:
I was very happy when the team of Prof. Sch. at the Charite published a general article about CFS (they don't use the term ME) this year. But it turned out to be a translation of an article (or medical book chapter) by Bleijenberg and van der Meer. It's horrible (Fukuda criteria, Chalder fatigue scale, CBT (its evidence-base is mentioned), graded activity, less focus on symptoms etc). This is now one of two general articles on CFS on the website of the Charite.
I think van der Meer is quite popular in Germany (have read several times about him, of course mainly from his German PBS-colleagues).
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I thought Scheibenbogen was very pro biomedical, what was the Blijenberg van der Meer doing there???
 
boombachi

boombachi

Senior Member
Messages
392
Location
Hampshire, UK
"intensively digitally plagued by a psychiatric patient" i love google translate.......

I don't know who this man is. I imagine he is a psychiatrist. I have also been intensively digitally plagued by people in my job as well as verbally plagued and occaisionally physically plagued, but I recognise that those responsible are vulnerable and experiencing considerable distress. Perhaps I am just a little less delicate than this man but if I blogged publicly about them like this I would be sacked!!!
 
Grigor

Grigor

Senior Member
Messages
462
Location
Amsterdam
boombachi said:
"intensively digitally plagued by a psychiatric patient" i love google translate.......

I don't know who this man is. I imagine he is a psychiatrist. I have also been intensively digitally plagued by people in my job as well as verbally plagued and occaisionally physically plagued, but I recognise that those responsible are vulnerable and experiencing considerable distress. Perhaps I am just a little less delicate than this man but if I blogged publicly about them like this I would be sacked!!!
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Yeah, he's exaggerating like crazy. I am very critical of his CBT GET MUPS stories. No stalking or whatever. It's BS. He's trying to distract from the actual criticism.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
Grigor said:
I thought Scheibenbogen was very pro biomedical, what was the Blijenberg van der Meer doing there???
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Hi @Grigor, sorry this got so long, relevant part is the last paragraph. :)
First I'd like to say that I'm extremely grateful to the little CFS team at the Charite. So even when I criticise them, I appreciate them very much.
I'm sure Prof. Sch. is pro biomedical, but to me personally it also seems like she doesn't want to get involved in ME politics. The other article on the website of the Charite mentions some good PACE results. The team hasn't spoken out against PACE and not signed the open letter. And they generally don't speak out loudly and don't challenge the German "guideline tiredness" (that sounds like it was written by Edward Shorter) or the recommendations of the Robert Koch Institut and some stuff in interviews can be a little irritating (they never speak of severe patients and recommend staying active and e.g. this year Prof. Sch. said that every third patient gets healthy again). But of course I don't know what they are doing behind the scenes and how they maybe advocate in closed meetings. Maybe they're not able to speak out against official guidelines or PACE and need to keep out of the politics to be able to do at least a little ME research, I don't know, pure speculation (I like to imagine "excuses" like this).

The van der Meer translation - I heard that he wrote the chapter on ME/CFS in a popular medical book. And it was either the Charite team who could translate it into German or someone else would have done it. And they thought that it would do the least harm if they translated it and had the possibility to at least soften the edges a little (vs a translation by a PBS proponent). But that's only a story I heard. And even if I accept the reason, it's still very irritating to have it on the Charite website and to read stuff like this from the Charite. The Charite provides the only official information in German and it all includes some PBS stuff (what doesn't help with insurance and disability).
 
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boombachi

boombachi

Senior Member
Messages
392
Location
Hampshire, UK
Grigor

Grigor

Senior Member
Messages
462
Location
Amsterdam
boombachi said:
Very well written blog. I am assuming it's your own translation from Dutch. Google translate doesn't cope well with Dutch normally. How could anyone consider your blog militant or even criticism? It is polite and eloquent.
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It was, well I'm not always that polite but I think he just doesn't like people talking back. He is convinced we need some CBT and GET and that's it. It's our own choice that we are still (as) ill
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
Grigor said:
That's surprising indeed. The interviews I did read seemed very good. Not anti-PACE, but rather advising patient not to push etc.
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That's true, they always speak of PEM. But there are still also some other recommendations mixed in like staying active, CBT, not staying in bed etc. I have no doubt that they are purely biomedical in their research, just the treatment/management stuff sounds sometimes a little too mainstream. When I got my diagnosis at the Charite, I didn't know anything about ME, so missed the opportunity to ask them about their views (it's only possible to go there once).
Also I think from listening to Prof. Sch. talk in interviews, it's just not her personal style to challenge people. When I saw an interview with Dr. Fluge, it struck me how different they are, he told the moderator directly that his repeatedly asking about psychological factors was unfounded.

boombachi said:
Very well written blog. I am assuming it's your own translation from Dutch. Google translate doesn't cope well with Dutch normally. How could anyone consider your blog militant or even criticism? It is polite and eloquent.
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I agree. And I had a look at the blog from this guy and saw your comments @Grigor and they were also polite. That stalking stuff is crazy. And how he talked about your website (the pictures) is unbelievable.
 
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