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Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

Discussion in 'General ME/CFS News' started by Cheshire, Jan 19, 2016.

  1. Cheshire

    Cheshire Senior Member

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    https://www.sciencebasedmedicine.org/chronic-fatigue-syndrome-rituximab-revisited/

    Very weird and perplexing article, to say the least...

    FYI Harriet Hall also wrote this article: https://www.sciencebasedmedicine.org/iom-recommends-replacing-cfs-with-seid/
    Discussed here: http://forums.phoenixrising.me/inde...iom-recommends-replacing-cfs-with-seid.35963/

    Edit: she uses PR material and posts made by Whitney Dafoe.
     
    Last edited: Jan 19, 2016
  2. Gijs

    Gijs Senior Member

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    Maybe she can write an article about the PACE trial and CBT/GET as well. I hope she read this topic too. But i don't think so.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  4. A.B.

    A.B. Senior Member

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    Key information missing here:

    * There was a placebo control group and blinding. Omitting this will lead readers to the conclusion that the response may have merely been a placebo effect.

    * While the primary endpoint was negative, the delayed transient response is consistent with an autoimmune disease involving pathogenic B cells.

    * While I'm too tired to go over the study and various articles to find out how many patients in that trial had a sustained remission, I suspect there were at least some. Characterising the response to Rituximab as transient in general is inaccurate. The later open label trial (1) reported sustained remission even 3 years after treatment in 11 out of 18 responders. This is unlikely to be entirely due to regression to the mean. Again I'm too tired to dig out details but ME/CFS in a patient sample that has been sick for a while is unlikely to spontaneously go into remission like this.

    1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4488509/
     
    Last edited: Jan 19, 2016
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  5. chipmunk1

    chipmunk1 Senior Member

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    and CBT was never used before PACE.
     
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  6. user9876

    user9876 Senior Member

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    But wouldn't we expect the response to be transient in that as b cells build up again and start the production of antibodies then the effects would go if it were triggered by antibodies.
     
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  7. A.B.

    A.B. Senior Member

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    The theory is that wiping them out completely leads to remission, wiping them out partially leads to a transient improvement.
     
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  8. A.B.

    A.B. Senior Member

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    By the way I have no interest in defending Kogelnik, I just thought the parts aboutthe evidence to date was biased (there are some other parts which were probably also biased but I don't want to investigate further at the moment). A critique of Kogelnik would be more credible if the rest was unbiased.
     
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  9. snowathlete

    snowathlete having a NICE day for once

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    Interesting, but it's mainly speculation.
    Some ppl who may have MECFS may have been given Rituximab in the U.S. under an unknown protocol that wasn't part of a formal trial and some of them may have got worse as a result but we don't know.

    On the other hand, the formal trials we do know about and can base science on are very promising. Also failed to mention there is a UK trial starting and rumours of the NIH funding a U.S. trial.

    I also think the stuff about adverse effects was not as balanced as it should have been because fatalities from Ritux, although they can occur, are rare and there is no evidence to show its any higher in MECFS than anything else.

    Pleased to see coverage of MECFS. Why you wouldn't cover the currently bigger story about the dodgy PACE trial though I really don't know.
     
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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    What a balanced article - not.

    First off - exercise intolerance is not incompatible with an autoimmune theory.
    Also, if Whitney Dafoe had PML he would have been dead by now.
    Furthermore: There is a big study on PML incidence in RA, the conlusion was that 1 in 25000 got it approx. And they were on other chemo to if i remember correctly.
    And why is it not mentioned that infections due to rtx can be treated?
     
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  11. A.B.

    A.B. Senior Member

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    As far as I know the side effects also depend a lot on what disease patients have.

    Also the article conveniently doesn't mention how often progressive multifocal leukoencephalopathy actually occurs. From what I remember it's very rare.
     
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  12. Sidereal

    Sidereal Senior Member

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    Comment under the article:

     
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  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    It`s extremely rare http://www.ncbi.nlm.nih.gov/pubmed/21555606
     
  14. Nielk

    Nielk

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    Does every article about ME/CFS have to be about PACE to be of value? It is important to look at all the information that is available (or suppressed) so far about Rituximab for ME/CFS patients. The writer warns that because Dr. Kogelnik has not been forthright about his experience administrating Rituximab to patients in the US, we do not really know how many have been helped in a measurable way.

    I have taken Rituximab over a year ago for my new diagnosis of RA. It did not help me, but it didn't harm me either. I posted about my experience here. At the time, I was searching for stories from Dr. Kogelnik's patients but, found very little. I did find some patients who claimed their ME has declined since taking the drug. We should not discount these experience just because we desire the outcome to be different.

    I do hope that a percentage of patients will ultimately be helped by Rituximab because so far we have so little in successful treatments but, we should not jump the gun and put down those that report on the current state of knowledge.
     
  15. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Problem is she didn`t though, her representation of rtx adverse effects makes the drug sound more dangerous than it actually is.
     
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  16. greeneagledown

    greeneagledown Senior Member

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    Everything people have said about being cautious with using this drug experimentally in ME/CFS is reasonable. And if this disease weren't so debilitating, or if there were other treatments already available, it would be ridiculous for anyone to use Rituximab prior to publication of a successful phase 3 study. But this disease is wretched and there are no known effective treatments. That has to factor into the risk/reward calculus here. The phase 3 study probably isn't going to be published until 2018 and in the meantime, people are losing years of their lives.

    It may well be the case that Rituximab makes some patients permanently worse. But judging from the preliminary results from Norway, the likelihood of someone going into remission is FAR higher than the likelihood of someone getting permanently worse.
     
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  17. jimells

    jimells Senior Member

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    Assuming that the unknown patients did get worse, how does anyone "know' it was the Rituximab and not the natural progression of the patient's illness? No matter what I do or don't do, my illness is gradually getting worse. I can maybe affect the speed of the decline, but not stop or reverse it.

    I wonder just what clinical trials the author thinks these patients could've been enrolled in. And what about patient privacy? The author seems to think spreading acknowledged gossip is more important.
     
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  18. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    That is a very good point. A modest percentage of people with ME get worse every year, even though they keep their activity levels down. It then follows as likely that a certain percentage with ME who dont respond, will get worse.

    And what do we learn in school?
    Correlation does not imply causation.

    One thing we do know though: About 25 % of the patients taking rtx goes through a transient worsening, that can last weeks, even months.
     
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  19. jimells

    jimells Senior Member

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    @A.B. Great response to the essay. Thank you.
     
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  20. Nielk

    Nielk

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    This logic should apply as well to self reported results of improvements. Since this disease ebbs and flows, there are automatic periods of worsening and improvements.
     
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