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

Jonathan Edwards

Jonathan Edwards

Senior Member (Voting Rights)
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.
 
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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:
MB VanElzakker: I guess part of the issue is a question of, sort of, nosology and diagnosis. Does this mean that she actually didn't have the condition [ME] that we're all talking about, or does it mean that the definition of the condition that we're talking about captures a lot of other things? That's what I personally think it is. There's a lot of things that can look this way [ME] and it's not all the same thing unfortunately. I personally think that is the reality and it makes it hard.

But for me, the fact that that area of the brain being compressed leads to the similar symptoms is an argument that that area of the brain is really important. Assuming that this is what really happened, it's an N of one, it's not like [Jen Brea] was only doing one thing, you know, we have to be really careful about inferring causation from that sort of thing. But assuming that it is, it does seem like compression of that area was causing this, at least a lot of the symptoms she was having.

N Klimas: Because people ask this all the time, how does that work up happen? Because [brain compression]'s always missed.

MB VanElzakker: This is a little controversial, but apparently most people argue that it takes an upright MRI to properly diagnose because when you're in a supine position you've relieved [compression] [...].

I mean, I think you have to be really careful because this is not a mild surgery. And I think there are -- and I sort of want to say this kindly -- doctors who, sort of, this is their thing, and with someone holding a hammer sees a nail everywhere analogy I think they're going to be seeing a lot of nails. I think you just really have to be careful to go and have this very invasive surgery with the assumption that it's just all going to make it all go away. Just get second, third opinions and be careful.

N Klimas: Now I remember the Chiari malformation thing was what -- 5, 10 years ago --. Everyone was supposed to have Chiari malformation. And there were some, you know, but they were rare. So be careful that we don't assume it's been the main thing all along.

MB VanElzakker: I guess one of the things they ought to do is see if traction makes the symptoms go away, and then taking the traction away makes the symptoms go back. It's a simple sort of A-B-A-B design.
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lunarainbows said:
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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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
 
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lunarainbows said:
Yes - here https://www.s4me.info/threads/video-science-for-me-q-a-with-dr-michael-vanelzakker-oct-2019.11791/

michiel tack has posted a summary later down the thread too. I haven’t watched the talk for a while but I remember being surprised at the change.
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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".
 
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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!
 
Jonathan Edwards said:
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.
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any reason Chris Ponting is not on the list?
 
Jonathan Edwards said:
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.
Click to expand...

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).
 
@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.
 
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