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

There are many proven treatments for a wide variety of illnesses. As a few examples, HIV, diabetes and a large number of cancers are now manageable if caught early enough and the proven treatments are used. Some illnesses have been wiped out through the use of a proven treatment. Just because there are illnesses that don't have proven treatments doesn't mean that there are no proven treatments at all.

 

This topic has drawn a lot of attention and rightly so. I believe all the questions it raises probably will do something good for patients in general. But I do think that this “thing” will “solve itself” (another naive assumption?). It will sort of all be out in the open, if that make any sense?

So just to get priorities right for my own sake. My point is there are far more important general concerns that patients should engage in, first and foremost thinking of LP. The work of Tuller here is absolutely vital and the community should help him in the best possible way. LP is probably the most dangerous thing of all!

 

Thanks. Do you mean that the definition of the consensus statement I quoted is different from what you have read elsewhere about cervical meduallary syndrome?
Or do you mean that the symptoms I listed are actually not so different from ME/CFS as I suggested in the text?

 

I’ve now managed to read through this and other threads.

I’m still a bit confused by some of the circular arguments being presented. I’m not picking on people particularly rather than trying to understand the validity of the points raised.

On one hand the prevalence of this is low in the general population (I don’t think that is in dispute) so the likelihood of it being a thing in pwme is really low in terms of numbers. On the other hand people are saying ‘but how do you know the prevalence is relevant to pwme?’ Well that is a circular argument. I’m not saying anyone here is doing this deliberately or with anything but good intentions but it is a circular argument unless more points are raised.

It does feel like an extreme case for a small minority ...given so far we only have a small number of cases being discussed? Again you could say, but people don’t know they have it? Well presumably at some point they will know as it progresses or discover it by chance? I would have expected from the large number of pwme that the number of cases we have seen discussed?

I find some of the counter arguments posed on risk seem a little shallow when you scratch the surface.

The risk of infection being reduced if you maintain personal hygiene before the op is a bit of a weak argument ...just having an open wound in hospital is a risk? This is the risk for any kind of invasive procedure along with several others not discussed. A better argumentbwould have been to discuss infection rates from operations generally?

Comparing the risk of the complications and side affects as worth it compared to being bed bound is also a worry for me. This is because surely the risk is about having the procedure with no improvement afterwards with the side effects. That could be countered with good diagnosis, but in the same breath we are talking about poor diagnosis because there aren’t enough experts. Again this is a circular argument. The true argument is about the likely success of diagnosis and surgery.

The money argument is also hollow for people with a national health service or inadequate insurance. This is remortgage your house money for many within what is a vulnerable population that in a lot of cases are struggling to make ends meet. I think there may be an argument that money is preventing surgery, but I don’t think this has come up yet? Certainly two of the cases are mostly not relevant to the majority of people due to them having good insurance or working for an employer that gives good insurance. This is more worrying because it gives people false hope unless you have the means.

So far the responses in the pro camp are not really showing anything other than ..isn’t this interesting? I also think there is a little bit of a campaign going on, which personally I find unhelpful to discussing the pros and cons. Kind of ‘over egging the pudding’ and ‘jumping the gun’ to mix idioms.

I’m open minded to this but so far there has been a lack of scientific rigour in the arguments and a lack of logic in the counter arguments.

This is probably because there isn’t much to go on. Perhaps there should be more calls for research and publications on this rather than try and work out what it’s all about from what is just a handful of testimonials.

 

Thanks Jeff. I appreciate you having a look at my concerns.

I'm glad that some neurosurgeons are trying to decrease the complications of this type of surgery for example by no longer using rib harvest. I do not think however that it's best to eliminate the information about these complications if we do not exactly know if the alternatives are safe, effective and used by all of the neurosurgeons you listed. When Henderson et al. reported this complication earlier this year (the surgeries reported on, date back to 2011-2012), he did not minimalize these negative outcomes by saying that this is an outdated technique that he and his team would no longer use.

I seemed to have shorted the quote (sorry if that was misleading- I will adjust this in the text). The actual quote is: 'One to four years after the craniocervical fusion, some subjects developed pain over the suboccipital instrumentation (the "screw saddles") due to tissue thinning, and requested hardware removal (8/20 subjects).' So it were the screw saddles that were causing the pain. I'm not sure if this was due to plate instrumentation and that such complications do not occur with condylar screw fusions.

I focused on the Henderson study because this is often referred to, but the rate and type of complications are similar in other studies. So I don't think these concerns should be eliminated. In my text, I didn't quote from Ashafai et al. who published an updated review on occipitocervical fusion this year. So this is recent information. The reason I didn't quote it is because the segment is a bit long: but here is what it says:

 

My text is not focussed on whether CCI/AAI could cause ME/CFS symptoms or not, but on what the current evidence says; what is known and written down in scientific publications. This is not a matter of belief. So unless one provides scientific literature that suggests otherwise, one will have to accept that current evidence does indeed suggest the conclusions I've listed.

The disclaimer could be adjusted to emphasize that this is only current understanding in the scientific literature. So you could say: "The current literature says ME/CFS and CCI/AAI cause symptoms that are quite different but I think there might be an overlooked connection because of reasons A or B..." Or: "There is currently no scientific evidence to suggest that CCI/AAI surgery relieves ME/CFS symptoms, but researchers have only just started to look at this possibility and some EDS-researchers think it might be that this type of surgery also helps to relieve other symptoms such as fatigue or POTS."

 

the need to repeatedly ask for basic information is odd.
basics should be provided without interested patients asking every piss.
as previous patients they should know that and what is of interest.

more weird, that those questions are evaded.

if you read the related threads you will find, that almost nobody dares to ask anymore.

 

I think we are finally getting the vocabulary to describe what happens in people with ME after exercise. With many diseases people experience post exertional fatigue but ME is the only one where you get post exertional malaise which involves a reaction from the immune system. (It is not common to hear "I dug the garden yesterday and now I feel as if I have marbles in my armpits"

Unless immune flare ups are common we can't say that PEM is usual in other diseases. CFS like symptoms are more likely to be fatigue and lack of stamina, bad enough but not ME.

Having said that, the list of symptoms for CCI has more in common with ME that you would think. I am sure I am not alone in having many of them. Neurogenic bladder for one; inability to urinate was one of the symptoms during the Royal Free epidemic and was a nightmare for me for the first few years of my illness. After that I developed techniques which helped but it is still a problem.

Likewise double vision, bulbar involvement, paralysis, neck pains and especially balance problems. I had more skinned knees in my thirties than in my school days. Having to use a wheelchair and handles throughout the house have helped with that, a silver lining

Though I do think that the overlap is due to ME being a neurological disease, rather than a spine problem in most cases.

 

Perhaps this was in the back of my mind when I posted the above.

https://www.youtube.com/watch?v=afdciYez3M0

Briefly discussed here, https://www.s4me.info/threads/news-from-scandinavia.647/page-28#post-156571

 

Thank you @Michiel Tack for documenting some of your research thoughts on this. Very helpful, and I especially appreciate that you included sources

I too do see some overlap, however... Early on in this thread someone mentioned out of ME patients who had this checked, 90% qualified. This will be a skewed number, because only those with the most obvious issues in this direction will have had this screening.

Additionally, I worry a bit about the hammer & nail possibility. Surely there is a range of abnormalities that can be observed in this imagery, with some being 'clearly a problem' and others more to a degree of 'hmmm we cant be sure, but given all the issues the patient has, this could be a thing'. I imagine these people are among those figures with partial improvement: the specific instability improved a bit, but it may fairly often not be the full story.

I do think this is a good thing to get more attention, as it underlines the problems with concepts like MUS etc. As long as we don't know what exactly is wrong, it is important to keep looking (while not going on an expensive wild goose chase, obviously).

 

No, you have hit the nail on the head.

Physicians and surgeons have been dealing with tens of thousands of cases of CCI, of known cause, over many decades. They do not have symptoms of ME.

Moreover, for any disease process we always see milder and more severe cases. If ME was associated with CCI there should be some severe cases with physical signs attributable to CCI. As far as I know there are none.

It is totally implausible that there is any substantial relationship between ME and CCI.

 

@Stuart, I think there is a problem with the concept of 'cervical medullary syndrome' as used by the neurosurgeon Peterson.

I don't think most neurologists would recognise his 'syndrome' as a good guide to the clinical picture of CCI. Maybe the term is more widely used, but if it is I don't know whether it is described the way he does.

The problem is that his list is unhelpful.

If neck pain or headache are present they are not part of a 'medullary' problem. They are due to whatever bony or joint problem is associated with the CCI. Moreover, since a high proportion of people have neck problems and headaches these symptoms are too non-specific to be helpful.

Several of the other symptoms are much too vague to be useful - visual and hearing problems for instance - lots of people have those.

To put it crudely, a broken arm and a broken leg both cause pain but nobody confuses a broken arm with a broken leg, or with ME or fibromyalgia for that matter.

The clinical presentations of CCI and ME are completely unrelated, as Michiel indicates. If you attend to basic detail for each symptom in a real case you will find it either points one way or another, not both.

I agree with Michiel that Jeff would do well to add disclaimers to his comments. There is no similarity and there is no evidence for CCI being related to ME. To suggest otherwise is to put vulnerable people, particularly children, in grave danger.

 

One further thing that has not been mentioned is that the complications of upper cervical surgery may develop over many decades. Once the mechanics of the spine have been altered secondary changes tend to occur over many years. Bony overgrowth commonly occurs, and that may cause nerve damage. Bone overgrowth as a late result of altered spinal mechanics is probably the most common cause of neurological problems in the spine - although the initial insult is more often a disc herniation than surgery.

 

At present PEM is subjective, we don't understand the physiopathology/mechanism. The autonomic system is affected for some but not all for pwME. I'm a little puzzled that JB knew when she woke up from surgery that she no longer had PEM.

 

This is what is puzzling me also...and if it’s only been 5 months .

Either way anyone that’s had ME for a while knows that PEM is fluctuating and the condition can have periods of spontaneous remission that last years? There are far more testimonials of this than neck surgery?

 

@Andy

Good point about practitioners jumping on the band wagon due to increased demand.

I saw this in another field of health care. In one instance the practitioner appeared to expand their practice regarding a new demand, solely for the money. Unfortunately their ethics left a lot to be desired, as did their skills. This person harmed several people, and I understand was sued by a number. Eventually they lost their license. This was no alternative-one-weekend-workshop practitioner. This was someone who had spent several years becoming trained. In the end, this person was incompetent, unethical, and harmed several.

I learned as many do when young that medical professionals and others similar are to be trusted, and almost revered. They only do things for the best of reasons. Not so in some cases.

It would be a concern to see surgeons new to this work gravitate to it due to an increased demand - especially for the money.

 

As regards pwME being well informed - there are likely hundreds of thousands who are not due to their severity, finances etc. Being well informed is not a vaccination against desperation. One can research till the cows come home, and still pick a harmful treatment.

 

I'm so glad you pointed this out Michiel Tack. Beeing with CFS/ME for 30 years now ( 70% recovered at the moment). So glad for Jen, but her blog made such an distress in my CFS/ME group. People bound for bed 20, 30, 40 years or more see hope in her story and ask around how much it costs, etc. It is such an positive shock for them but it can be fake positive. I would write to her myself if I could, but I am not native English speaker and this is not any easy task. So thank you for writting to her.

 

There is no scientifically demonstrated "placebo effect" besides transient pain reduction due to conditioning of the "endorphin" system. Everything else is regression to the mean (inevitable natural healing) or reporting biases.

Undergoing very expensive, risky surgery very much is a major problem if patients are misdiagnosed and don't actually have the disorder that the surgery is supposed to treat.

 

Jen B.

.

Why not

There are many illnesses where the symptoms overlap with another illness and you don’t actually have both diseases. The important thing is that Jen has found what was causing her symptoms and found relief but does she need to claim CCI caused her her ME symptoms and with what authority does she actually get to claim that. It’s a pretty bold statement that might cause a lot of unnecessary testing and expense to patients.