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

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.

 

#MESpine is now being used on Twitter.☹️

 

Thanks for that, @Jonathan Edwards .

I think until now, the only 'high-profile' professional doing ME research who spoke out against these irresponsible claims was Todd Davenport, on Twitter some time ago?

Perhaps he would endorse your request if someone approached him?

https://twitter.com/sunsopeningband

https://www.pacific.edu/academics/s...-physical-therapy/faculty/todd-davenport.html

 

https://twitter.com/user/status/1298160428921638912

Code:

https://twitter.com/StenHelmfrid/status/1298160428921638912

 

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):

https://www.youtube.com/watch?v=j2UoegoyKzc

Bolding mine:

 

https://twitter.com/user/status/1298186713215512579

 

@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.

 

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).

 

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

 

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.

 

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

https://www.youtube.com/watch?v=pFWKo9sqAyM

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".

 

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

-Leighton Barnden
-Zack Shan

 

Out they come...

https://twitter.com/user/status/1298196199007117312

 

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!

 

any reason Chris Ponting is not on the list?

 

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.

 

I have asked:

https://twitter.com/user/status/1298258578944352257



I doubt very much I will receive an answer.