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

Sarah94 said:
Maybe because there's a difference in the potential for patients to access it. Rituximab is a drug, and as such there's potential for anyone to get it (through a doctor prescribing, or through dodgy online pharmacies, or even through illegal methods). Whereas CCI surgery is something that really only a few surgeons will do. Less warning needed.
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With all due respect, this doesn't make sense at all.
Rituximab & surgery are not easily accessible treatments. They are both potentialy dangerous and none of them should be advertised as long as they have not been tested properly.
 
Sarah94 said:
Less warning needed.
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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.
 
Cheshire said:
With all due respect, this doesn't make sense at all.
Rituximab & surgery are not easily accessible treatments. They are both potentialy dangerous and none of them should be advertised as long as they have not been tested properly.
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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.
 
Sarah94 said:
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.
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So does that prevent to warn that surgery for CFS is not evidence based?

Edit: change for clarity
 
Sarah94 said:
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.
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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.

Sarah94 said:
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.
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No. There are thousands of neurosurgeons who could do the procedure. At least as many as there are quacks to prescribe rituximab off label.
 
From that translation it appears the surgeons have no idea what ME is. They give the Oxford definition of 6 months unexplained fatigue.

I don't know when they first started doing these operations, but shouldn't they give it a couple of years follow up before claiming cures? Some people do things like LP and think they are cured, go back to work, and months later crash to a worse state than before.
 
@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.
 
Trish said:
From that translation it appears the surgeons have no idea what ME is. They give the Oxford definition of 6 months unexplained fatigue.
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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.

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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
 
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Note from the moderation team:

The moderation team has been dealing with a large number of reports from this thread from members, both those supporting Jen Brea's stance on CCI and those critical of it.

Although Jen is nominally still a member here, she has declared herself no longer a participant on the forum, so Rule 1 is being interpreted more loosely in this case. It is her public role unrelated to posting on the forum that is the issue of concern to members in this discussion.

We have precedents for allowing criticism of public actions and statements of forum members who have a high public profile, for example AfME. We believe that it is in the interests of the ME community that the CCI issue and Jen's promotion of it are discussed in a similarly open fashion.

Of course, there is still a requirement that criticisms of anyone are factually based, relevant to the topic under discussion and not unduly personal.
 
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....
There will be subsets like CCI or postvural HHV6 or Enterovirus, until there is nothing left of ME.
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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.
 
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Jaybee00 said:
Secondly, unfortunately, this thread is also bringing out the "ME versus CFS" people.
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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.
 
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JES said:
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.
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I guess a trial of a surgery can never be blinded?
 
Sarah94 said:
I guess a trial of a surgery can never be blinded?
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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.
 
Another sort of trial might be to have three groups- 1. healthy controls, 2. people with diagnosed ME with self-reported high level of a list of CCI symptoms/neck trauma history, 3. people with diagnosed ME with self-reported low level of CCI symptoms and relevant history.

Give them all standing MRIs. Then, in a blinded assessment, see if anyone can find any differences.
 
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