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

Adequate controls for surgery always present difficulties. However, a control does not have to be a simple 'placebo'. It needs tone some alternative scenario such that comparison with the test treatment reliably indicates that outcomes following test treatment are actually due to that specific intervention. The best control in any given situation will depend on all sorts of different factors.

At the very least historical controls can be used. Sham procedures can be used. But very often the best option is to compare a range of procedures all of which might be effective, but which differ in objectively measurable components (such as the angle of fixation, the number of levels of fixation...) and see if there is any reliable difference between them. For drugs the equivalent is a dose response curve - which is a much better to get convincing evidence of efficacy than just a placebo control.

 

I wanted to express my gratitude to the signatories of the position statement re. spinal surgery.

 

Ok, thank you! Still it seems difficult to find something suitable in regards to this type of surgery? Instead of fixating C0-C2 a C0-C1?

 

This sounds rather worrying as well?

"Newly occurring severe headaches can occur in 18% of patients after PSF from C2 distally. The patients with newly occurring severe headaches had significantly higher preoperative NDI score (neck pain)."
Is this the same as CCF surgery?

https://t.co/TF7JJvYagy

 

Thank you Trish. Clear answer. Although the fusion with the skull seems rather unnatural as well.

 

I believe my C1 is fused to the skull, from birth. I remember this from chiropractor xrays, a long while ago. Go figure, i save myself a surgery I would not know if this causes me any restrictions, as i do not know otherwise. Maybe head extension is restricted.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5535332/

 

If you can nod without bending your neck forward (just bob your chin down) your C1 is not fused to your skull.

 

I don’t think i can do that

 

This showed up on my twitter stream:

https://twitter.com/user/status/1323334727298940928


Moderator note:
This has been posted and is discussed here:
https://www.s4me.info/threads/forwa...ad-july-2020-onwards.16000/page-2#post-298803

 

In this video http://www.blendedconnect.nl/events/zonmw/ the thread is here https://s4me.info/threads/news-from-the-netherlands-next-event-19-november-2020.15014/#post-303668 Michael VanElzakker begins at 0:41:30.

At 0:48:53 Mike in his gentle compassionate way filled with empathy explains that structural spinal problems should be ruled out when making an ME diagnosis.

At 1:05:00 during a Q&A after Mike's presentation, he is asked a question by a Professor, "Do you agree CCI surgery should be done in a study surrounding?" The short answer is yes. The answer includes a prominent patient who had instability and symptoms remitted in her case. Mike does not think CCI and ME are the same thing, certainly not in everyone. Because ME is a syndrome there is a subgroup where instability is driving most of the symptoms. The vast majority of ME patients should not look for the CCI option. In Mike's kind gentle way, I think he is telling us some instability patients have been misdiagnosed as ME.

I listened to the English speakers twice, I didn't hear any say that ME is damaging tissues and creating spinal instability.

 

Dr V E may have a gentle way of talking but does this make any sense?
If a subgroup of ME have instability (i.e. CCI) driving symptoms then presumably ME is nota misdiagnosis - because we are saying they are a subset of ME. Either instability is part of ME or it is not. It cannot be both.

Does Dr v E have any reliable evidence for instability being relevant to ME? There is nothing published. The clinical anecdotes do not add up. I am all in favour of people being filled with empathy but misleading statements about serious disease are not justified by sounding empathetic.

 

https://www.youtube.com/watch?v=quUTD4v-9lc

At 26:00 Donna Felsenstein included CCI/AAI near the end of her presentation. Donna said they are learning more about it. As you can see on the slide, Donna has CCI listed as something to rule out when making an MECFS diagnosis.

 

I wasn't able to listen to it myself so I'm happy to hear he actually said yes.

 

"A surgery that is not possible here, is also not possible abroad."

By professor Wilco Peul in one of the leading newspapers in the Netherlands who will be conducting a CCI study. Google translated.

Source: https://www.telegraaf.nl/watuzegt/2015214658/operatie-die-hier-niet-kan-kan-in-buitenland-ook-niet

Wilco Peul is professor of neurosurgery Leiden-The Hague, LUMC, HMC & HAGA

Patients who undergo surgery in another country, on the assumption that an ailment cannot be treated in the Netherlands; it taunts Ronald Bartels and Wilco Peul.

“All treatments that are possible can be carried out in our country. Without deception and exploitation."

"What is not possible here, is also not possible abroad"

Good quality goes hand in hand with responsible use of resources, say Bartels and Peul. "Exploitation of people in a hopeless situation is the order of the day abroad."

OPINION Professors Ronald Bartels and Wilco Peul

Dutch health care is very high on international rankings. Although the course of the pandemic suggests otherwise, the quality is particularly good, as is accessibility and efficiency. The latter means that good quality goes hand in hand with responsible use of resources.
The high quality of Dutch health care is related to a number of factors. Very important are the great motivation and the high level of education of the people who work in healthcare.
All treatments that are possible can be carried out in the Netherlands. However, there is a restriction: the treatment must have scientifically demonstrated its added value. Scientific support is essential in Dutch health care. This applies to any therapy that is used, but also to the indication for which it is used.
On the basis of scientific research, for example, an operation for back pain without a clearly defined cause is not performed in the Netherlands. This is different in neighboring countries. Recent international literature confirms our Dutch policy on the treatment of back pain without a demonstrable cause.
However, people with back pain can be at their wits' end. Their whole life is dominated by back pain. They are willing to believe any therapist who creates good expectations. If necessary, they travel abroad.

Standing like a house.

A similar condition has been current for a number of years. It's called CCI / AAI, where instability should be present in the joint connecting the skull to the neck. The presence of instability in this joint or the joint between the first and second cervical vertebrae in various conditions is well known. This operation takes place in different hospitals.
The consequences for the patient are enormous. Fastening the head to the neck means no longer being able to look forward or turn the head properly. The indication for this type of mutilating intervention must be solid. The patient must know what the limitations are afterwards. This is only possible if we speak from experience that is based on scientific substantiation.
Now it appears that a new indication has emerged for this drastic operation. Patients with complaints such as neck pain, headache, tingling, hypersensitivity to loud sounds and light, loss of concentration, shaking muscles, blurred vision, which cannot be explained by consulted doctors, undergo an MRI. This would show increased mobility. It is remarkable that this is not seen by Dutch experts and an operative treatment is not offered either, because everything falls within normal limits. Only in Barcelona is there a surgeon who does operate for this indication at a multiple of the price that this treatment would cost in the Netherlands. Crowdfunding is sometimes necessary.

Unacceptable

This is an unacceptable situation that must be stopped. People in desperate situations, even children, are being exploited and made false promises. The operation creates a new handicap. We do not claim to have the right to wisdom, but then let's find out together the value of the alleged hypermobility and find a solution to the complaints of these people.

Ronald Bartels (right) is professor of neurosurgery Nijmegen, Radboudumc & CWZ;

Wilco Peul is professor of neurosurgery Leiden-The Hague, LUMC, HMC & HAGA

 

It isn't very clear why they are doing a study if they are. The fact that someone elsewhere is operating does not seem to be a justification on its own. There is no reference to the methodological difficulties they will need to overcome.