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A request to those involved in ME research to indicate their position on spinal surgery

Discussion in 'Moderated Threads' started by Jonathan Edwards, Aug 25, 2020.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think the spreading and endorsing of pseudoscience has gone far enough.

    I would like to make a personal request here to the following people to publicly declare that they agree that disseminating claims linking ME/CFS to spinal problems requiring surgery is unwarranted and irresponsible.

    I hope that one way or another this will come to their attention:

    Dr Ron Davis
    Dr Nancy Klimas
    Dr Jonas Bergquist
    Dr Lucinda Bateman
    Dr James Baraniuk
    Dr Luis Nacul
    Dr Anthony Komaroff
    Dr Suzanne Vernon
    Dr Oysten Fluge
    Dr Olav Mella
    Dr Mady Hornig
    Dr Ian Lipkin
    Dr Avi Nath
    Dr Björn Bragee
    Dr Bo Bertilson
    Dr Carmen Scheibenbogen
    Dr Don Staines
    Dr Sonia Marshall-Gradisnik
    Dr Charles Shepherd
    Dr Nigel Speight
    Dr Maureen Hansen
    Dr Derya Unutmaz
    Dr Dan Peterson
    Dr Elisa Oltra
    Dr Emma Rheinhold
    Dr Alan Hakim
    Dr Stephen Holgate
    Dr Neil Harrison
    Dr Carmine Pariente
    Dr Julia Newton

    It is something that responsible physicians and scientists need to say.
     
  2. obeat

    obeat Senior Member (Voting Rights)

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    #MESpine is now being used on Twitter.☹️
     
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  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Last edited: Aug 25, 2020
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  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Code:
    https://twitter.com/StenHelmfrid/status/1298160428921638912
     
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  5. cassava7

    cassava7 Senior Member (Voting Rights)

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    Drs Nancy Klimas and Michael VanElzakker's positions, from the Invest in ME Research 2019 conference (starts from the question about Jen Brea's remission from decompressive surgery at 2:00):


    Bolding mine:
     
    Last edited: Aug 25, 2020
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  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  7. strategist

    strategist Senior Member (Voting Rights)

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    @Jonathan Edwards may I suggest editing the post and adding some additional information? I am not sure that everyone on the list even knows what claims are being made.
     
  8. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Dr Van Elzakker seemed to completely change his mind later on, in another talk (I think it was the one hosted by Andy from this forum).
     
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  9. cassava7

    cassava7 Senior Member (Voting Rights)

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    Oops, did he? Could you please link to a resource where he mentions his new position? I haven't been following his work closely.

    EDIT: I found @Dx Revision Watch's post about a few of Dr VanElzakker's tweets this February and the subsequent discussion in the other thread on CCI/AAI. In these tweets, he talks about being in contact with Dr Bolognese, wanting to do a structural study with high-resolution MRI, and observing (a) Facebook patient group(s), possibly Jen Brea's current ME/CFS Brain and Spine group.
    https://www.s4me.info/threads/conce...ty-surgery-in-me-cfs.9638/page-62#post-234186
     
    Last edited: Aug 25, 2020
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  10. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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  11. cassava7

    cassava7 Senior Member (Voting Rights)

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    Thank you. Dr VanElzakker specifically addresses structural issues and CCI from 43:08 to 48:26 here:

    He acknowledges -- with no caveat about either the N=1 or invasive surgery, unlike at the IIME conference -- that issues with the brainstem can cause ME symptoms. Though interestingly, he views structural problems such as compression as only one mechanism out of multiple ones (pathogens, inflammation...) that can affect the brainstem and trigger this pathway/these symptoms. He refers to this as "equifinality".
     
    Last edited: Aug 25, 2020
  12. Simone

    Simone Senior Member (Voting Rights)

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    Two Australian ME/CFS neuroimaging researchers to add to the list:

    -Leighton Barnden
    -Zack Shan
     
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  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Out they come...

     
  14. Peter

    Peter Senior Member (Voting Rights)

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    Great initiative.

    Early on it was an interesting anecdotal story by a prominent patient, but nothing more than that. Then it developed to something very worrisome non-cautious speculation, and I admit I just lost interest. That’s not a adequate response, but some kind of personal protection from pseudoscience. But clearly this must be addressed in a proper way, and much appreciated!
     
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  15. Trish

    Trish Moderator Staff Member

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  16. Hutan

    Hutan Moderator Staff Member

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    This thread has been made fully moderated for now due to the speed and nature of the posting.

    Please keep on the topic of the title and original post.
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    any reason Chris Ponting is not on the list?
     
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  18. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Thank you. Asking for caution versus overexcitment is not much to ask for.

    Authoritative holding statements of "the work hasn't been done for us to know, so I don't have opinion yet/I doubt it/maybe some people will turn out to be helped while others are harmed, but regardless it's not worth anyone seeking extremely risky surgery outwith formal trials" are not much to ask for from the scientifically trained.

    The only position that takes is that the rigourous science hasn't been done yet and slicing up your neck is not as risk free as experimenting with vitamins.........

    (The overexcitment in this topic can be exhausting for us. I know it was for me and I stopped looking at the furore).
     
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  19. cassava7

    cassava7 Senior Member (Voting Rights)

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    @Jonathan Edwards: in a similar vein as @strategist's question, could you please clarify your request?

    Specifically, which of these points would you like the cited MDs to warn against:

    1. the risk of harm over invasive spinal surgery
    2. the hypothetical links between ME/CFS and brainstem compression
    3. the promotion of these hypothetical links into claims of possible recovery by some patients, in particular those who have undergone surgery

    The combination of points 1 and 3 is a concerning, ongoing problem given the current absence of evidence (let alone rigorous RCTs). But some researchers and MDs are interested into 2. -- investigating this hypothesis to gather evidence might identify a subset of ME patients, or dispel it altogether.

    This clarification is all the more important as some patients have already tweeted that you would like research into 2) to be dismissed.
     
  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I have asked:




    I doubt very much I will receive an answer.
     
    Last edited: Aug 25, 2020
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