The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

Jim Faas comments on 'renowned' PACE trial

Discussion in 'General ME/CFS News' started by MeSci, Jul 15, 2017.

  1. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
    I'm very happy it was discussed and added this sentence to the blog , please correct my english if you see any mistkes:

    "My only question is whether it was actually the CBT that was the reason for the progress, as you mentioned in your blog. Of course, the GET (AET) group did exercises, but also the CBT group. So was it really just a CBT body & mind thing, or was it really just because of the exercises ???"
     
    Solstice likes this.
  2. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    Sounds allright to me. But as I said I don't see the point in trying to discredit CBT in other diseases. Imo that's just a distraction-tactic from their side. There is ample ammo to shoot at their suggestions about ME.
     
  3. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
    I agree, and I'm not against CBT. It's just the recovery aspect that bothers me. And he is suggesting this in this disease as well. Or at least objective improvements and uses it to smear us at the end.
     
    Solstice likes this.
  4. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
  5. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    Hey @Grigor, I see you've left some more comments. I was going to chime in, but apparently you've gotta take a subscription to do that? Anyway, keep up the good work.
     
    MeSci and Grigor like this.
  6. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
    Yes you do, I took one for 10 week. It was well worth it to respond to him.
     
    MeSci likes this.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,178
    https://www.facebook.com/photo.php?fbid=10155652433784770&set=a.496586774769.272981.798244769&type=3

    Anil van der Zee is with David Tuller and James C. Coyne.

    September 8 at 3:25pm ·
    Jim Faas is @ it again!!!

    Former president of the association of insurance physicians (NVVG) and Senior Staff Officer at the Dutch unemployment office (UWV bezwaar en beroep) he's in charge of 700 insurance physicians has written his second blog about PACE and ME/cvs in "Medisch Contact". Medisch Contact is the leading (online) medical news magazine in the Netherlands.

    It's again a little teamwork together with dr. Mark Vink and Anil van der Zee. It's so exciting to see this happening in the Netherlands. Things are slowly changing. Amazing. Let's keep pushing people.

    Please share!!!

    Nederlands: https://www.medischcontact.nl/opini...vsme-nog-meer-ongemakkelijke-onwaarheden-.htm

    English (Google translate): http://bit.ly/2vSKnn0

    Please leave a thank you Tweet underneath the blog on Twitter.

    https://twitter.com/medischcontact/status/906157672600363008
     
  8. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,178
     
    Invisible Woman, ukxmrv and Barry53 like this.
  9. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    Fingers itching to write a response to v.d. Meer. He's out in the open now, ready to be taken down. Van der Meer is one of the people that has made this disease so horrible for people in the Netherlands.
     
  10. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
    Indeed this deserves a good answer.
     
    HowToEscape?, Marc_NL and AndyPR like this.
  11. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    There doesn't seem to be much of substance to van der Meer's comment. Maybe I'm missing something in the translation?
     
    Invisible Woman likes this.
  12. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    You're not. As we all know it's pretty impossible to defend the indefensible. I don't have an account on medisch contact and can't pay to get one right now. But it would be very easy to just counter him by saying:

    those other trials you mention were they all open-label with subjective outcomes too? I know only of 3 trials that used actometer data and they turned up nothing. All the other trials, like f.e. Fitnet used subjective criteria in an open-label trial, a surefire way to get biased results. Allthough at long term follow-up even Fitnet turned up empty.

    For as far as the rituximab trials are concerned, could you outline their flaws?
     
    Last edited: Sep 14, 2017
  13. thijs

    thijs

    Messages:
    30
    Likes:
    160
    Don't allow them to change the subject, just stick to the CBT stuff.

    Even if the Norwegian trials would be biased, that would be no excuse for the PACE/CBT research to be biased as well.
     
  14. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    You're absolutely right there.
     
  15. thijs

    thijs

    Messages:
    30
    Likes:
    160
    Side note, this is a quote from Van der Meer, about his CFS hypothesis:
    (Rough translation)
    Source: https://www.volkskrant.nl/archief/chronische-zoektocht~a3250965/

    I think a patient with objective lactic acid increase like @Mark Vink would like to have a word with him?
     
    Invisible Woman likes this.
  16. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,812
    Yeah, I also get elevated lactate. Doesn't particularly correlate with muscle use or burn ... but then again, neither does "fatigue" :p
     
    Invisible Woman likes this.
  17. Lou Corsius

    Lou Corsius

    Messages:
    34
    Likes:
    470
    The Netherlands
    Jim Faas keeps pushing with a second blog and he got a reaction from fatigue professor Jos van der Meer. You can find that reaction here. The translation Anil made with the help of Googletranslate is not totally accurate. https://corsius.wordpress.com/2017/09/15/1190/
     
  18. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,806
    Cornwall, UK
    I have small amounts of vegan sugar-free chocolate each day. (2-4 squares) It's sweetened with xylitol. It's made by Plamil or another firm - quite a lot are acceptable now.
     
    AndyPR likes this.
  20. Grigor

    Grigor Senior Member

    Messages:
    404
    Likes:
    857
    Amsterdam
    According to van der Meer we have "fatigue" popping up in our brain in quite big chocolate letters so you can take all the sugar out as much as you want. The only thing that will cure you is stop eating chocolate and do CBT.
     
    Invisible Woman and AndyPR like this.

See more popular forum discussions.

Share This Page