New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Unexpected findings and promoting monocausal claims, a cautionary tale.

Discussion in 'General ME/CFS News' started by Kati, Jun 12, 2016.

  1. Kati

    Kati Patient in training

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    Note: I have hesitated to post in this category as opposed to the most recent research, because while this is a published article, it seems to me to be more a commentary and a warning than anything else. Perhaps a political warning coming from the wessely school.

    http://www.ncbi.nlm.nih.gov/pubmed/27283254

    J Eval Clin Pract. 2016 Jun 10. doi: 10.1111/jep.12584. [Epub ahead of print]
    Unexpected findings and promoting monocausal claims, a cautionary tale.
    Copeland SM1.
    Author information
    • 1CauseHealth Project, Norwegian University of Life Sciences, Ås, Norway.
    Abstract
    Stories of serendipitous discoveries in medicine incorrectly imply that the path from an unexpected observation to major discovery is straightforward or guaranteed. In this paper, I examine a case from the field of research about chronic fatigue syndrome (CFS). In Norway, an unexpected positive result during clinical care has led to the development of a research programme into the potential for the immunosuppressant drug rituximab to relieve the symptoms of CFS. The media and public have taken up researchers' speculations that their research results indicate a causal mechanism for CFS - consequently, patients now have great hope that 'tthe cause' of CFS has been found, and thus, a cure is sure to follow. I argue that a monocausal claim cannot be correctly asserted, either on the basis of the single case of an unexpected, although positive, result or on the basis of the empirical research that has followed up on that result. Further, assertion and promotion of this claim will have specific harmful effects: it threatens to inappropriately narrow the scope of research on CFS, might misdirect research altogether, and could directly and indirectly harm patients. Therefore, the CFS case presents a cautionary tale, illustrating the risks involved in drawing a theoretical hypothesis from an unexpected observation. Further, I draw attention to the tendency in contemporary clinical research with CFS to promote new research directions on the basis of reductive causal models of that syndrome. Particularly, in the case of CFS research, underdetermination and causal complexity undermine the potential value of a monocausal claim. In sum, when an unexpected finding occurs in clinical practice or medical research, the value of following up on that finding is to be found not in the projected value of a singular causal relationship inferred from the finding but rather in the process of research that follows
     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    This of course is only specific to Rituximab (which has so far caused no such narrowing) and has no relevance to psychiatric research over the last thirty years. Because that narrowing was all fine.
     
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  3. Cheshire

    Cheshire Senior Member

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    I don't know if it's the case for this guy, but generally those critical of the methodology of the biomedical research on ME/CFS suddenly lose all their scientific principles when confronted to psychobabbles.

    I'm really fed up of this double standart.
     
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  4. Kati

    Kati Patient in training

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    I wonder if anybody from northern Europe recognizes the author?
     
  5. hixxy

    hixxy Senior Member

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    It's really sad that they can't see the hypocrisy or even worse that they are being intentionally hypocritical.
     
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  6. Effi

    Effi Senior Member

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    @Kati this seems to be Samantha Copeland, specialized in philosophy of science, theory of knowledge, and applied philosophy.

    A few titles coming from her research project team:

    - Are physiotherapists the new philosophers?
    - Integrating philosophical perspectives into person-centered healthcare.
    - a Phd thesis on serendipity.

    Need I say more?
     
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  7. Valentijn

    Valentijn Senior Member

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    Samantha Marie Copeland
    Norwegian University of Life Sciences
    School of Business and Economics

    But I'm afraid we have to Blame Canada:

    Maybe next I'll ask my neighbor's fat orange rabbit what his expert opinion is on ME/CFS research :rolleyes: It'll probably have a firmer basis in reality.
     
    Last edited: Jun 12, 2016
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  8. halcyon

    halcyon Senior Member

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    This group seems benign on the surface, but there is a previous thread about them here.
     
  9. A.B.

    A.B. Senior Member

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    Sci hub doesn't have a copy of this yet so I can only comment on the abstract. I can agree with some of the sentiment expressed in it, but who knows what's written in the full article. It would be a mistake not to pursue all important leads. However a lot of stuff written on the topic is just nonsense and in the market of ideas, there are winners and losers. This is good. Holding onto bad ideas just slows down progress. Let's not get upset about this article, but rather watch in amusement as some try to save their sinking ship. ME/CFS is becoming a serious area of research and won't be a mental playground for the psychobabblers much longer.
     
    Last edited: Jun 12, 2016
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  10. user9876

    user9876 Senior Member

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    I'm not sure she understands what is really being claimed and what other research is going on. Fluge and Mella have been very careful not to over claim.

    As I see it Rituximab suggests an autoimmune mechanism for at least some ME patients. However that does not suggest a single cause as there could be a number of different antibodies that could lead to different subgroups. The autoimmune mechanism isn't just proposed because Rituximab works with some patients but also because of the way the timings work which suggest that it is not the b-cells themselves or infected b-cells. I think the work looking at blood filtering (sorry can't remember the technical term) may also help in understanding this. But the use of Rituximab is not suggesting a causal mechanism or even a single causal mechanism but just pointing at one link within a causal chain.

    But there are other important clues in things like Microglia activation showing up in brain scans that should be investigated. There are also projects to look more widely such as the NIH trial and Ron Davis's work. So there are other things being looked at.

    I can see from outside there may be concern that there is a lack of research work but this is not due to Rituximab trails suggesting a possible set of mechanisms but rather due to the complete lack of funding. I think a look at studies over time would show the diversity of research in ME is increasing not decreasing over the last few years. And given the NIH seem to be taking ME seriously now I think the diversity will increase further.
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Well Sam, you are so right on cue there!

    There was also this crazy naive guy who suggested that rituximab might be useful for rheumatoid arthritis which everyone knew was a multifactorial mostly T cell disease. He even did a trial of five cases and the editor of Rheumatology just said 'Huh, only five cases, you can't be serious you want to publish this? The same editor remarked at a meeting later that year that we should not be thinking about curing rheumatoid arthritis - a silly idea.

    Can't remember what happened to the guy or rituxiwatsit or whatever. So simplistic!!

    If dear Sam had any idea of the discussions of the multifactorial aetiology of ME I have had with my friends Oystein and Olav she might realise she is talking through her a***. I don't think she knows what reductive means either.

    Oh and that other guy, I gather he became a philosopher. Writes on Leibnizian non-reductive dynamism. Another mad venture I guess. And it might not net 10 billion dollars this time.

    Edit: i have anew spellchecker that is putting Gremlins in, hopefully now sorted.
     
    Last edited: Jun 12, 2016
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  12. Ben H

    Ben H OMF Correspondent

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    :rofl:

    Well that was a waste of a PhD......

    The irony is strong with this one. Whether intentional or not.


    The reality is we have the least 'narrowing', and the widest scope ever in M.E research right now. Odd that the author cannot see that.


    B
     
    Last edited: Jun 12, 2016
  13. MEMum

    MEMum Senior Member

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    Some unexpected findings have transformed medicine, mould on bread....?
    I am hopeful that rituximab and research into managing autoimmunity could transform many people's lives.
     
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  14. Esther12

    Esther12 Senior Member

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    Pretty much all the coverage I've seen on rituximab has been about how it may be helpful for some patients. Just from the abstract, this looks like an attack on a straw man.
     
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  15. Mark

    Mark Former CEO

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    As so often, PatJ's quote of the day seems most apt:

     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    You should be careful @Esther12 because Sam might not be sure what a straw man is and she is bound to get around to reading this thread in time.

    What concerns me more is that this is an attack on two very real men who have brought proper methodology to ME/CFS research. She is effectively saying 'what you are doing is unethical, it is bad for ME research and you should not be doing it'. She seems to want 'non-reductive' approaches - by which I think she means not invoking any physical mechanisms or using proper methodology like blinding and proper controls but doing research the way physiotherapists like doing it - more touchy feely (the PACE trial always seemed to me to be the sort of thing physics used to design).

    This piece is actually a personal insult to Oystein and Olav and an apology is due. We won't get one but maybe Sam will get the message to stop being an ignorant busybody.
     
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  17. A.B.

    A.B. Senior Member

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    Maybe this is the beginning of a new trend: proponents of psychosocial explanations smearing biomedical research because they are, apparently, afraid of losing funding, influence, and prestige.

    PS: the "videogaming as treatment for CFS" trial from Australia also gave a rather unfair account of recent biomedical research, using the adjective "unsuccessful".
     
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  18. chipmunk1

    chipmunk1 Senior Member

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    She thinks Rituximab is potentially harmful while she is endorsing heavy neuro/psychosurgery stuff such as Deep Brain Stimulation.

    http://www.jemh.ca/issues/v6/documents/JEMH_Vol6_SupplementArticle-PsychiatricApplicationsforDBS.pdf

    Basically it's OK to experiment on patients brains despite the horrible history of psychosurgery and the poor understanding of the nervous system but Rituximab should not be researched because it could harm patients.

    She seems to argue basically anything goes because it is believed to help and treatment options have been exhausted. Not true for ME/CFS of course.

    :bang-head:
     
  19. A.B.

    A.B. Senior Member

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    Last edited: Jun 12, 2016
  20. chipmunk1

    chipmunk1 Senior Member

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