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"Rituximab in CFS: More research needed" letter in PlosOne

Discussion in 'Rituximab: News and Research' started by Sasha, Oct 28, 2011.

  1. redo

    redo Senior Member

    I hope you'll weigh in there Eric.

    Combined with the fact, already mentioned here, that symptoms during and after infusion was pretty much similar in both groups, and that "All patients were given oral cetirizine 10 mg, paracetamol 1 g, and dexamethasone 8 mg prior to infusion." really indicates patients had no idea. The fact that all patients where given such a cortisol dose would really indicate that the placebo patients could just as easily have felt "something" during the infusion. The Rituximab doesn't do anything until long after the infusion anyway (even in RA and other syndromes), unless there's an infusion related emergency (of which there wasn't in the study).
  2. Sing

    Sing Senior Member

    New England
    KFG, you are too funny! "Scientists abhor emotional language. When things get heated they can go to substantial lengths not to show emotion but still give their opponent an intellectual slap, as it were. Handbags at dawn."

    I noticed that "astonishing" too immediately. It is a snobbish British type of put down..."And the Princesses Eugenie and Beatrice appeared in the most astonishing hats!"

    I share your view of psychiatrists. They are constantly looking for someone else's business to mind, to take over, actually (another British snobbism). This makes them feel important and useful, which they are not.

  3. Dolphin

    Dolphin Senior Member

    I thought I'd point out, in case anyone posted anywhere, that none of these authors are psychiatrists.

    I think this might be a deliberate thing: I wouldn't at all be surprised if Peter White was involved. For example, he co-wrote a letter with Alastair Miller (one of the authors) to the BMJ during the summer complaining about the Canadian criteria (sounded like the sort of letter Peter White wrote); he was the lead author of a letter to Science when XMRV first came out - and Andrew Lloyd and Dedra Buchwald were co-authors. He is also based in Barts and is doing research on CFS with Matthew Buckland; he and Van der Meer co-wrote:
    and Brian Argus was one of the people who praised the PACE Trial in a press release when it came out (along with Alastair Miller) (see below).

    Peter White is very inclined to write letters in recent years - not alone to medical journals, but also newspapers, sometimes even to the letters pages of patient organisations.

    Anyway, who knows what happened. Van der Meer, Buchwald and Lloyd all wrote in letters when XMRV came out in Science trying to pour cold water on the theory. I don't know much about Buckland (White's colleague) but all the others are into CBT/GET (not sure the extent of this with Buchwald). Anyway, it is interesting to see the willingness of some to pour cold water on research that may lead to drug treatment.

    Alastair Miller and Brian Argus on the PACE Trial:


  4. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    thanks to everyone for posting good comments! I posted:

  5. Dolphin

    Dolphin Senior Member

    Thanks KFG. No problem.

    Some doctors can change into different "creatures" when talking about/dealing with CFS.
  6. Holmsey

    Holmsey Senior Member

    Scotland, UK
    Between the lines

    Glad Im not the only one reading the spaces and not the words, I was somewhat taken aback by the first few posts which appeared overly generous to the authors of this letter.
    Myself, I was so angry after reading it late Friday last that I pretty much lost a nights sleep pouring over what it really meant.
    As pointed out it pretty much sets out as a high brow trashing of the study just by calling it astonishing. But it goes way beyond that, it suggests that Mella and Fluge were taken in by a cohort who immediately realised which test group they were in and planned around that to deliberately deceive them. Stupid scientists, if only theyd brought on board some of those Psychologists who have our number.
    But planned what? Well its obvious isnt it, because were all so conspiratorial and desperate to remove the psychological label at any cost we colluded to show that Rituximub can cure us, not in the slightest put off by the fact it can in extreme cases kill, were obviously all out to fool then into thinking its going to make us better? Obviously Mella and Fluge have no idea how committed we are to this cause when two of our number continue to selflessly feign wellness to this day just to keep them off the scent.
    And almost as if to prove just how twisted we are we instructed the whole cohort to report feeling better not straight away but months later, at a point in time which would keep the mystery upon which weve built our illness well and truly alive, again back footing not only Mella and Fluge but even the authors of this letter who will no doubt be racking their brains right now trying to figure out just what were all up to this time.

    Of course theres always the possibility everyone is just telling the truth, and that maybe one or two of those who felt better only months later almost reluctantly mentioned it for fear of being doubted again, while wishing it had happened earlier in the study when it would have made more sense.
    But thats just me being fiendishly cleaver again, keep them guessing troops it wont be long before we have the psychiatrists needing psychiatry.
    Wonko and dsdmom like this.
  7. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    It's because we're not just sick people; we're scapegoats.
  8. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    It's because were the current...black, Jew, Moslem, Christian, rich, poor, untouchable or whatever scapegoat for weakminded, bigotted incompetant SOBs in the medical profession:
    slap someone into the "untermensch" box, and thus, you are superior and can do ANY damn thing you like ot them because you are superior and they are weaklings, deserving of your sadism!
    Blech :/

    it's the ugly reality many simple won't accept. See contemptous way ME patients have been described, never mind TORTURED etc.

    if this happened ot ANY other group the psychobabblers would be in JAIL, not merely out of a job, and that is a *fact*

    Replace "ME/CFS" for any other group in their bigotted speech, and think about it...?

    You have two choices: they are mentally disturbed or cold bloodedly, deliberately evil.
    justinreilly likes this.
  9. paddygirl

    paddygirl Senior Member

    There is a post in Plos One from the Ass. Editor admonishing people for inappropriate comments and reminding them of the forum rules.

    I can't for the life of me see anything wrong with them, except of course for the not so subtle Van der Meer put downs.

    One thing that always strikes me about those who look to help us, and for once it's something that works in our favour. The abuse, subtle or not, heaped on anyone who steps up to seek genuine answers for us makes for fierce advocates.

    Mella and Fluge for example, working in well respected relative anonymity. They find a thread of hope that must be followed, not to do so would almost be a crime. What happens? The knives are out and these researchers get a taste of what is flung at us.

    Not too smart of the other lot, as it makes very committed friends for us.
    Roy S likes this.
  10. Dolphin

    Dolphin Senior Member

    BTW, Brian Argus' name is on the PACE Trial paper (Lancet).

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