The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

How is a doctor prescribing any different from a surgeon operating? Both involve a medical decision not based on good evidence.

Before the surgeons do anything more in the way of a 'trial' I think it would be good for them to publish the images that they based their treatment on, co-authorihg with some radiologists who know what they are doing.

 

I mean, I had a look just now on one of those online pharmacies, and they were selling rituximab. So yeah. Much more easily obtainable than surgery.

And my other point is, the number of doctors who theoretically could (irresponsibly, yes) prescribe rituximab, is much higher than the number of surgeons who could theoretically carry out CCI surgery.

 

I am sure you can get scalpels and forceps on line too - it is exactly the same. All the people who accessed rituximab did so through a medical professional.

No. There are thousands of neurosurgeons who could do the procedure. At least as many as there are quacks to prescribe rituximab off label.

 

It may be worth pondering that there are good reasons for thinking that certain physicians in California are involved in both the off label use of rituximab and referral for neck surgery.

 

Translation from the link:

 

Sorry I'm probably being thick but I don't understand the phrase "prevent to warn"?

 

Another relevant point is that drugs require licensing, Operations do not. Irresponsible use of surgery is 100 times easier than irresponsible use of drugs.

 

No worries I suspect you mean "preclude from warning"?

If so, my answer is: no, I am not saying that that precludes from making a warning.

 

@Trish yes, exactly. The article also doesn't mention POTS, active viruses or any other comorbid conditions that Jeff and Jen recovered from.

Or previous surgeries such as thyroid cancer or dental surgery that may have brought on their underlying 'instability' issues.

 

Interestingly, the surgeon who assessed Jennifer was unaware of ‘concept of PEM’ when he was first evaluating her for CCI, so I am assuming, at that time, he was also unaware of ME?

Though I do not at all think J’s surgeon was trying to resolve ME with surgery. I understand he was more resolving CCI (which, in turn, of course, Jen is certain was cause of her own ME).



I highlighted the PEM quote here.



I do wonder what the Spanish neurosurgeons' understanding of ME/its different criteria is? And do all their fifteen patients also have EDS?

*Edited to add last sentence

 

In general, to me, this thread does not seem to be very useful or rewarding. It seems to be degenerating into some type of tribal dispute.

If you don't want the CCI operation, then please, by all means, don't have one. If people want the operation with INFORMED CONSENT, then power to them. Sure, it's possible that people are being misled by ignorant rapacious surgeons, but some people have also mysteriously improved.

With respect to Jen Brea, I have better things to do with my somewhat reduced life than police her twitter threads. Can you think of another person who has done as much to bring attention to this disease?

Secondly, unfortunately, this thread is also bringing out the "ME versus CFS" people.

As mentioned earlier....

If you keep dividing this disease until the only people who really have "it" are the people who have had enteroviral infections, then I wish you good luck with your fundraising efforts.

I just spent some time on twitter and the "ME vs. CFS" thing is popping up again, where of course, anyone doesn't have the classic "ME", is a wastebasket. The larger you make your "wastebasket", the more political support you will engender.

 

Yeah, agreed. I'm more interested in what are going to be the next steps in this CCI thing. A trial sounds good at first, but I presume there are no blinded trials with placebo surgeries. If so, wouldn't a trial for CCI surgery carry the same weakness as the unblinded smaller rituximab trial? It seems to me a trial would in any case not give a definite answer in this case.

 

I guess a trial of a surgery can never be blinded?

 

Surgical trials can be blinded using sham procedures. That has practical difficulties and major ethical difficulties but it has been done in the past in some situations.

But I am not sure that a trial of surgery is needed. If the surgical immobilisation goes ahead on the basis of there being a relief of symptoms with traction, which I understand is the routine here, then the obvious ting to do is a blinded trial of traction and sham traction - which could include dose response features with partial traction. There are devices that ensure traction 24/7 for extended periods I believe.

Before there is any talk of a trial the clinical and radiological evidence of CCI should be made public in a publication. In fact that evidence should have been public long ago and there should have been a trial of prolonged traction, not surgery.

If an ethical review board (IRB) had ever been involved in this we should have the relevant information now. It looks as if it never was. Why not?

A worrying question is why other neurosurgeons have not called this out. I fear the answer is because neurosurgeons operate without good reasons all the time. I have had one neurosurgical operation that in hindsight I realise I should never have had. Recently I was offered another one but I concluded that there was no good justification for that either. And this was in area of routine surgery of the sort done by the tens of thousands.