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new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

Discussion in 'General ME/CFS News' started by TrixieStix, May 17, 2019.

  1. TrixieStix

    TrixieStix Senior Member (Voting Rights)

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  2. chrisb

    chrisb Senior Member (Voting Rights)

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    I think that her use of the term "wild goose chase" to describe apparently well conducted research is unfortunate.
     
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  3. Andy

    Andy Committee Member & Outreach

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    Seems to me a pretty reasonable article. It finishes
    Article appeared originally here, https://sciencebasedmedicine.org/chronic-fatigue-syndrome-and-rituximab/
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    What Dr Hall seems to have missed is that the Haukeland group rituximab programme is about the first piece of high quality clinical science in ME and has shown everyone else how things should be done.

    Hall clearly fails to understand that an apparent delayed response is expected in autoimmune disease and was a legitimate reason to proceed to phase 3.

    She does not appear to realise that, as she herself notes, the Haukeland group have consistently advised against use of rituximab outside adequately designed trials. The open study was a well designed follow on from phase 2, which is the right thing to do. The Haukeland group are not as far as I am aware calling for more research using rituximab.

    Like so many of these critics, the target agenda is narrowly squeezed into what is predefined as bad practice. She totally fails to mention that most of the other 'respectable' research is far worse.
     
  5. Trish

    Trish Moderator Staff Member

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    It's a very confusingly written article. If you pick your way through carefully you get the correct version, that Fluge and Mella went through all the correct steps culminating a large well conducted double blind trial with null results.

    By muddling that up in the article with the stories of misbehaviour of other doctors charging people lots of money to be treated with rituximab against the advice of Fluge and Mella, it leaves the reader with the impression that everyone involved in the rituximab for ME saga behaved badly.
     
  6. strategist

    strategist Senior Member (Voting Rights)

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    What about cyclophosphamide? It seems to me that a RCT of it was justified by the earlier Rituximab findings, which are now recognized as spurious. There no longer seems to be a reason to think cyclophosphamide could be effective.

    Edit: I agree that the article itself is a little confusing. It seems to be mainly a justified attack on that Norwegian quack, but it's not made clear that Fluge and Mella acted in an exemplary manner.
     
    Last edited: May 17, 2019
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  7. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I think their studies started with noting a remarkable improvement in approx 7 ME/CFS patients who received chemotherapy for cancer. I think cyclophosphamide and rituximab were both part of these treatments that seemed to cause a remarkable improvement and so both were researched.
     
  8. feeb

    feeb Established Member

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    The article was also posted on Science-Based Medicine last month (I thought it looked familiar!): https://sciencebasedmedicine.org/chronic-fatigue-syndrome-and-rituximab/

    I remember thinking at the time that it was a slightly odd angle of attack for all the same reasons stated up-thread - the researchers did a trial, they found null results, and then they reported those results honestly and accurately. I'm not sure what more we could possibly ask from them under the circumstances.
     
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    As someone who donated quite a lot of money in the quite desperate attempts to get funding going initially in that wonderful campaign led by the wonderful dr in Norway dr Maria something which preceded eventual extra funding by the Norway MRC, I quite resent this type of article. PwME would have loved well funded, wide ranging research unravelling the basics of our illness starting in 1990 to put us in the position of doing fully reasoned studies, but it didn’t happen, there were pilot and early phase rituximab studies supporting the larger ones and the hypothesis was reasonable enough so patients themselves decided that in the absence of anything else at the time it was worth supporting and participating in.
    The drs involved were some of the first to really recognise severe ME and try to help, their respect and compassion to patients was immensely encouraging, they seemed to try to do things very well professionally, ethically and scientifically and despite null results care enough to carry on in the field. They attended conferences and highly engaged with the world ME community. The final question, isn’t it time to look elsewhere, who exactly is still fixated on B cell therapy and ofcourse we should be looking everywhere
     
    Last edited: May 17, 2019
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    This is very confused. The trial was following unexpected evidence of benefits from an earlier trial, that's literally the process of medical research for pragmatic treatments in a nutshell. You find something that helps, you try to disprove it. Here it clearly showed that subjective improvement is common and thus makes even more dubious the subjective psychosocial fluff.

    "Time to look elsewhere" is absurd since it clearly means psychosocial fluff, which has been a thoroughly disastrous dead-end despite being the dominant paradigm for 3 decades. If anything, this was actually looking elsewhere, following up on actual leads, rather than gut feelings that have been thoroughly discredited. Most medical research in ME has been aimless, not part of any coherent strategy. This was a rare case of following a credible lead and it would have been unethical not to do so.

    The argument against testing treatments just because some people appear to get better invalidates the failed psychosocial paradigm despite it being the clear "look elsewhere". Yet no doubt the author thinks PACE is great science even though she unwittingly discredits it and the whole psychosocial body of research.

    Great example of anti-scientific thinking. The author has a steadfast belief in a psychosomatic model and awkwardly tries to argue that without saying it plainly. She clearly wants a psychological explanation to be true, to the point of implying anything else is a waste of time. This approach has failed miserably yet the belief remains as strong as ever.

    As is tradition, "skeptics" tend to be the most gullible and prone to magical thinking. It's like this disease creates a rational vacuum where critical thinking simply shuts down.
     
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  11. Peter

    Peter Senior Member (Voting Rights)

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    You could probably argue, especially if you don’t know anything about ME at all and/or have prejudiced attitudes, that the hypothesis was quite bold, but it is based on clinical observations and the studies done in a proper way. Fluge and Mella have been acting very cautious all along. Been saying numerous times that rituximab not should be used outside a clinical trial, informing early results already autumn 2017 if remembering correct, to avoid that patients entered into private clinics, the controversial doctor mentioned and maybe others?

    Agree to the important point that the author miss the fact that they have done a very rigorous study in three phases of quality. That’s unlike so much else in this field. The quality of the studies should be mentioned.

    No matter of result, the hypothesis was worth testing, it was ethical to do so, and the work should be of inspiration to others, especially the ones opposing the study from the get-go solely on ideological basis.
     
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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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  13. EzzieD

    EzzieD Senior Member (Voting Rights)

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  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    To be fair, this assumption has a 99% success rate :)

    But now I'm curious what "looking elsewhere" means then. I can hardly think of anything that fits that description better than a trial that showed unexpected benefits and was followed through diligently with objective measures and honest conclusions that note the discrepancy between subjective and objective measures.
     
  16. feeb

    feeb Established Member

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    I interpret it as being a more general "stop obsessing over Rituximab!", which isn't really something that anybody is actually doing. Perhaps she feels that Øgreid has a great deal of influence in the domain of ME/CFS treatment? I don't know. Hall's writing is generally aimed at the demolition of quack treatments, so I think that's her main angle, and it's just a bit unfortunate that she's (accidentally, I hope) also traduced Fluge and Mella in the process.
     
    Last edited: May 18, 2019
  17. Mfairma

    Mfairma Established Member (Voting Rights)

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    I dislike "skeptics." While I am generally not supportive of many of the alternative remedies they like to attack, I find skeptics to be arrogant, dismissive, and incurious and, above all, to lack empathy. I don't at all see a desire to advance knowledge in the articles these folk write, but rather a desire to demonstrate superiority and enforce a certain cultural dogma, without regard for nuance.

    I first heard of Hall through the first Rituxan article she references in her current article. It's not unreasonable to take the position that patients shouldn't be trying drugs that haven't been approved for their disease, but Hall goes much further, stoking disdain for terribly ill patients, devoting little energy to trying to understand the conditions under which desperately ill patients might jump to spend absurd amounts of money to try risky, untested treatments. The article itself is titled "Jumping the Gun," and all you need to know about what she thinks of patients, at least at the time she wrote the article, is reflected in the first two sentences:

    "Now that the XMRV myth has been put to rest, patients with Chronic Fatigue Syndrome (CFS) are no longer jumping the gun to demand anti-retroviral treatments. But they are jumping the gun in new ways, based on very preliminary data coming out of Norway."


    Her next article on "CFS" is a mess. Through most of the article, she suggests respect for and agreement with the IOM report and the desire to diagnose "CFS" by definitions more exacting than Fukuda. By the end, however, she switches more overtly to editorial mode and, parroting completely the BPS line, effectively tells us that everything she's just reviewed is a bunch of bullshit:

    "Unexplained symptoms are common and frustrating. Doctors have always been puzzled by patients who complained of fatigue and a variety of associated symptoms without any identifiable pathological cause. Today’s CFS patients would once have been diagnosed with neurasthenia, a diagnosis that has been abandoned. “Fad” diagnoses wax and wane in popularity as both patients and doctors strive to give unexplained symptoms a satisfying name.

    The same constellation of symptoms might be variously diagnosed by different mainstream and alternative medical providers as CFS, fibromyalgia, chronic Lyme disease, Gulf War syndrome, post-traumatic stress disorder (PTSD), multiple chemical sensitivity, environmental sensitivity, candidiasis, and any number of fake diseases. However the symptoms start, they quickly become complicated by deconditioning. As patients exercise less, they become less able to exercise. Muscles atrophy with disuse, endurance declines. Confirmation bias sets in. The sick role becomes a self-fulfilling prophecy. Whatever the underlying pathology, the degree of suffering is affected by psychological factors. It is devilishly difficult to sort out the physical from the psychological and to know how best to help these sufferers. Current treatments are not very effective." (My bolding).

    I've read her current article and the article on PACE and there are other problems with these. I could elaborate, but why bother? From the few articles I've read, she has an angle, one that generally is deferential to the culturally dominant position and dismissive of already marginalized patients, and she has an analysis, which is generally pretty half-baked and incurious.
     
  18. TiredSam

    TiredSam Moderator Staff Member

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    Quite right, I'm glad to see doctors who were offering rituximab being called out, they should have waited until the trials had determined whether it really worked or not instead of jumping on a lucrative bandwagon and taking large amounts of money selling false hope to desperate sufferers.

    I didn't see the article as being critical of Fluge and Mella, just describing their clinical trial as a background to criticizing the doctors who jumped on the bandwagon as above. I also didn't see it as supporting the BPS view - "time to look elsewhere" could mean anything. And it is time to look elsewhere, it's no more than a statement of the bleedin' obvious.

    But then I'm unaware (or don't recall) Dr Hall's previous writings on CFS, so I wasn't reading it in that context. As a stand-alone article, it seemed fair enough to me. Subsequently having read the excerpts provided by @Mfairma above, Dr Hall does seem to have been disappointingly gullible and full of horse shit on previous occasions. Self-proclaimed skeptics and their blindspots - maybe someone should write a paper?
     
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The giveaway is that she refers to the delayed response as if it was clear evidence that the phase 2 study could have been seen to be a fluke. Which is a more or less direct lift from a comment from a Dutch BPS proponent in the comments section of PLOSONE when the paper came out. Below that comment you will see one from me pointing out that delayed response is the norm for rituximab (something the Dutchman was embarrassingly unaware of) and that the mention of the six month analysis was very sensible. Moreover the paper is not presented as positive in the way Hall claims (at least not as I remember it). The fact that the six month analysis was not the primary outcome is explicit, unlike some other trials.
     
  20. inox

    inox Senior Member (Voting Rights)

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    Bet I could guess who she "the correrespondent in Norway" who is invested in the skeptic community and very skeptic to both ME as a diagnosis and research into rituximab is... (but not going to, of course)

    In general, the skeptic community here have been very dissapointing - think how much more helpful it could have been if someone wrote something like this about the BPS-litterature, the PACE-study - or even the SMILE/LP-study.....? Not even a little peep about LP from the norwegian skeptics.

    Knowing what I know from the debate here, I'm absolutly reading this as an attempt to say that even doing the resarch on rituximab was based on to weak foundation, and sholdn't have been done. It's downplayed how it really got started - they didn't just observe this in one, single patient. And they did lots of groundwork before even doing the first, pilot attempt.

    Remember, there even was an attempt to stop the rituximab-study, from within the medical community and known "ME-deniers".

    The point about Øgreid shouldn't have offered the treatment is fair enough. But that section is also written as negativly as possible, to me. And I notice this "correspondent from Norway" in this context have no problems with patients surveys. It's written as if patients didn't know both the economic burden and the risks they were taking. This is absolutly untrue.

    Rituximab was one of the most discussed subjects in norwegin facebook-groups. Any patient concidering buying the experimental treatment would have known the earlier studies, the results and that there was absolutly no guarantee that they would get any better.

    It's true some patients protested stopping the treatment at Øgreid. But they were in the middle of an already started treatment, and just wanted the chance to finnish it. At this point the results from the main rituximab-study wasn't known yet.

    End then she ended it with confirming my impression:

    NB - the quote is taken slightly out of context.


    It feels very much as an attempt to paint the whole research into rituximab, the researchers and the situation with norwegian ME-patients in a negative light. Leaving out details that would have added nuance and a less crititcal tone to it.

    Nowhere is it mentioned that the whole international ME-research community was following Fluge and Mellas work. I would guess the most in detail read research in years? In focus of attention of top academics from several corners of the world, that I have no doubt wouldn't hesitate to point out any weakness.

    No mentioning of all the interessting knowledge and results the rituximab-study have produced, that are now generating new studies - that wouldn't have happened without the rituximab-trial. No mentioning of the biobank, the new reseach groups on genes, metabolism etc.

    Only mentioning the one other medical study on cyclo. - leaving out the reasoning as to why attempt it, that of course is based on more than just observing improvment in two cancer patients. Written this way, making it sound as if Fluge/Mella is just picking one medication after the other based on noting more then a loose hunch.

    From reasons I find hard to understand, leading voices in the norwegian skeptic community is very much not into Fluge and Mella, but outspoken about how ME-patients should try LP.....
     
    Last edited: May 20, 2019 at 12:28 AM
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