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

I am a vet so I developed and "medical way of thinking" . When I try to make an diagnoses that process looks in a way like an crime investigation. You have many suspects and than you eliminate one by one with expirience or some metods. In medicine we have expirience and tests. Than you say: " This is probably that." But you still have to prove it. Sometimes that prove is made by "treatment diagnosis" witch means: if you cure it with the treatment for that particular disease it was than that disease. Guessing and suspecting is nothing in medicine ( in crime solving too). I hope you can make some conclusions yourself what we have and what we haven't got proved in this case.

 

Yes. Our chiro trips are the one thing that gives some temporary relief.
Chiro is amazingly gentle, but not local.

 

FWIW i added published research regarding the Brainstem on the machine learning system i use and it got the second highest ranking :

The software therefore confirms a possible association of ME/CFS Symptoms with the Brainstem :

 

Hi @Jeff_w,

Thanks for responding.

This was a response to Stewart who wrote about the 'new' symptom cluster' neurosurgeons speculate is caused by brainstem compression, by which I assumed he meant cervical medullary syndrome. I mentioned Dr. Batzdorf presentation because Stewart linked it to me, saying that the symptom cluster Dr. Batzdorf describes looks like ME/CFS, I disagreed. This was a different blog post from the one that followed (that's why I wrote: "that brings me to another point...").

That's not exactly true. My wording was "Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS."

Right, but those were patients with EDS and Chiari, which both are known to cause fatigue. Also: a lot of people report fatigue. Studies show that up to 35% of the general population reports fatigue when asked about it. I assume you agree that their situation is clearly distinct from ME/CFS. Almost all medical condition will cause some fatigue, so that this symptoms is mentioned in a long list of other more noticeable symptoms doesn't mean that CCI looks like ME/CFS.

Take for example this case series I referred to in my previous post. Some of these patients reported fatigue but they also reported neurological symptoms that seem to distinguish them for ME/CFS patients such as loss of coordination, quadriparesis, visual changes, dizziness, vertigo, ringing in the ears etc. The most common symptoms in this study were those that I listed such as headache or neck pain, memory loss, hypoesthesias or paresthesias, clumsiness with frequent falls, imbalanced gait, and weakness in the upper or lower extremities. This looks quite different from ME/CFS. So it might be helpful to give that information. It would help readers figure out whether CCI might apply to them or not.

Come on Jeff. I never said that you, Jenn or Mattie are scaring people. And surely giving more precise information about what CCI looks like and how it differs from ME/CFS would not stoke people's fear but rather reassure most readers that this might not apply to them, while it would help patients who actually have these CCI symptoms to consider this diagnosis.

Yes, I do. I would like to emphasize that I merely suggested that extra information on the scientific background on CCI would be useful given the high stakes involved. I didn't say anything about the merits of your mechanical basis theory - it could be true and science always has to start somewhere. I hope that we get some decent research on this soon. I'm impressed by yours and Jens recovery story and take it very seriously. I hope that it will lead to a breakthrough in ME/CFS research. Rituximab didn't work out but it was a promising clue that started from a similar observation and the cyclophosphamide trial, also based on patients spontaneously improving, is still ongoing. I hope that something will be true for yours and Jenns case as well.

Perhaps I should add a little background: I and other skeptics here on the S4ME forum focus on exposing flaws in research on GET/CBT, the Lightning process and all sorts of biological treatments that have been proposed for ME/CFS. We do that to protect patients by getting clarity about what is and what isn't known about this condition and the proposed treatments. There have been many cases where this went wrong in the past in ME/CFS. Many ME/CFS patients are too sick to read much or to analyze scientific papers and are willing to take risks in the hope of relieving their suffering. So I think there's a need for people scrutinizing the information in the ME/CFS community. We do this with just about every paper that comes out, even of researchers who are championing our cause such as Ronald Davis. So the criticism I and others have given has not so much to do with the merits of your theory and our judgment of it but with the need to scrutinize all information about proposed ME/CFS treatments, certainly those that involve high risks. [EDIT: so the fact that other patients are improving after having CCI surgery isn't an argument against what I've been saying. It's certainly good news - but it doesn't change the fact that readers should best be provided with all information about CCI, fusion surgery and the possible risks involved].

I hope this makes things a little clearer.

Kind regards,

 

I think this discussion is very interesting and I am sorry if it feels like an attack on anyone. It is always good to hear of someone going into remission which can only move the research forward.

Now that we have more research and a forum like this where informed patients and others can finally examine this disease in depth it is time to look at the two big problems we face.

The first is what exactly are the symptoms of ME? The symptom list for neck problems have things like double vision, speech problems, balance problems and paralysis all of which I have and know that other people do too. While we were pushing for recognition for PEM and the immunological flare ups we have after exertion these other things just confused the issue but now they might give clues to what is actually going on.

By not mentioning these "strange" symptoms it makes it look as if they are not part of the ME constellation but they may be an important part. Other people may have things going on that I do not know.

Which brings us to the next problem. Do we actually have ME? The numbers rose every time a new definition came in and making fatigue the focus did not help, so there must be many people who have been told they have CFS or ME who do not. I may well be one of them. We all have the fear that a test will be found and everyone else will float away with a treatment and we will be left behind. We all know of people who have been rediagnosed after many years of suffering, tragically sometimes with a curable disease.

It makes it very difficult to discuss things without giving offence and I do not know the answer. All I can say is that we are all ill whether it is EBV, burn out, CCI or whatever and modern medical science is galloping away from helping with their MUPS, IAPPT and FND.

Also, for research we need to use the people who are most likely to have ME. They discovered HIV in the ones who definitely had AIDS and could then test everyone else. Maybe we could help by working out who is the best type of research subject.

 

I think the important thing to remember here is that a skilled neurologist does not simply tick boxes for speech or vision problems.

When I was a student I had a flatmate whose holiday job was checking potato fields for plants the wrong variety. After a week of intensive training he could tell if a field of Maris Piper was contaminated with examples of King Edward or Marabel or Vivaldi. The rest of us might be able to say that a plant had rather big leaves or a pinkish flower but would have no clue.

A skilled neurologist has that sort of power. It is not a matter of a speech problem but exactly what sort of speech problem - a bulbar dysarthria. It is not a matter of double vision but specific types of double vision in particular directions on particular eye movements. After six months specialist neurology training I got somewhere near to being able to recognise all the differences but I was still not able to make a precise diagnosis. But my teacher, from the National Hospital at Queen Square, would rarely make a mistake on a precise anatomical diagnosis. I have long since forgotten much of what I knew.

The average physician can sort common things but would not be competent to separate CCI symptoms from other causes reliably. A skilled neurologist is needed. But I believe a skilled neurologist is very unlikely to confuse symptoms from CCI with those from ME. As far as I am aware the neurological symptoms and signs reported in ME do not point to any specific structural neuropathology and have never turned out to be traceable to specific structural pathology. I realise that there are some isolated cases of autopsy findings in dorsal root ganglia but it is unclear to me what ME-like symptoms these might be thought to relate to.

 

I want to add something to my previous post. The way I get medical care I can say lead me to recovery ( witch was purely by itself). They tested me for so many things, among them HIV, cancer, even pre-cancer stage in organism, MS, lupus, autoimune thyroide diseasis, EBV infection, I really can't remember now... Than an neurologist said it could be CFS/ ME. But they didn't send me home with that uncurable illness. They continue looking ( of course I made them do that) . They found some little tings and solve them. That "beeing in good health" in other thing other than CFS/ME helped my organism to come out of CFS/ME symptoms ( but I am in recovery stage for 3th year now). But I never can say: I have had CFS/ME for sure. I have no proof. (Oh. If they add any name to this illness I will ignore them. Writting only this letters with / between is hard enough.)

 

Therefore, this article is supporting that people diagnosed with CCI experience fatigue and their fatigue is resolved by surgery. It does not include ME patients. Fatigue is a symptom of a huge number of illnesses/diseases, should we extrapolate that all conditions that cause fatigue overlap with CCI. Short and logical answer = no.

This involved 20 patients. Again, looks clinically like patients who get the fusion surgery experience symptom resolution.

Preoperative symptoms

I can think of quite a few conditions that overlapping symptoms with the above. Should we argue that all these conditions overlap with CCI. I think it’s a given that many illnesses have overlapping symptoms which is why diagnosis is difficult in some cases.

These symptoms are also compatible with other conditions.

What Michiel said was

As have already said many conditions have signs and symptoms that overlap with CCI and they also have symptoms that are clearly distinct from CCI which is why they are conditions with a different name that involve different treatments. Are you prepared to state that fusion surgery can resolve the symptoms of all the conditions that have overlapping symptoms or is just ME?

With all due respect does your “research” means that you have actually figured out something unique that will lead to a new clinical picture of ME or is it something else. Describing the three of you as a vanguard — “a group of people leading the way in new developments or ideas” is true that you have introduced that CCI and ME overlap and surgery for one will relieve the symptoms of other. Looking at the bigger clinical picture, it really doesn’t make sense and this what all the discussion is all about.

Thinking back to the days of XMRV, Mikovits was the vanguard leading patients into getting testing based on her word of what caused XMRV. Many wasted money on useless testing and treatment. I think, scepticism is warranted especially when it flys in the face of present research. So, at the end of the day, questions should be explored, and no matter what happens, you, Jen, and the others are better. This is what we all want, but to insist that ME is resolved/cured/put into remission by fusion surgery is premature and perhaps a bit reckless.

Jen is a huge presence in the ME community which is why I think some are asking her to be a more careful with her statements.

 

Dorsal, my mistake. Will correct my previous.

 

If i understand correctly multiple patients have improved with this surgery, while no one was cured of XMRV. I would call that a big difference.

 

A number of people have claimed to have improved with anti-virals, including anti-retrovirals.

 

Well, it is certainly possible that patients with CCI have symptoms that patients with ME/CFS also have. Such overlap is probably possible in all medical conditions. The thing is that the symptoms that are characteristic of a disorder and that clinicians use to recognize and diagnose the condition are clearly distinct in ME/CFS and in ICC. I suspect that almost no neurologist will consider the diagnosis of CCI based on symptom complaints such as fatigue, PEM etc.

Jeffs website currently explains in the FAQ: 'you could have CCI/AAI even if you have "only" the typical ME symptoms: POTS, Post-Exertional Malaise (PEM), etc.'

Later on, the website responds to the question: "I have ME. What symptoms should I be aware of that would suggest CCI/AAI? as follows: "Consider that PEM itself can be caused by CCI/AAI. Therefore, if you have ME, it would be worthwhile to be evaluated for CCI/AAI."


So this is the sort of thing I was responding to that deviates from the scientific literature and which I hope could be amended to provide some background on what CCI normally looks like. If really wanted you could still add: "my own experience and that of others was that ICC caused my ME/CFS symptoms such as PEM so I think that ME/CFS patients could have ICC even without having these characteristic ICC symptoms. So I advise..." Etc.

 

This comment by a person with ME on an ME forum exemplifies the impact of Jeff’s, Mattie’s, and Jen’s statements

So now most patients are going to be diagnosed with CCI based on the statements made by three people. I do think some care should be taken here. Words have power. I know they mean well but scepticism is truly warranted. If this were true, “most” will be diagnosed with CCI, then what does that mean for ME being a condition in it’s own right? Does ME become a symptom of CCI? What about all present and past research into ME, is it all meaningless. Just being the devil’s advocate. So if most have something that is treated successfully with fusion surgery, what about the rest who have an ME diagnosis who have no success with surgery? The ramifications of all of this are mind boggling.

 

I think there has been an upsurge in research and acceptance.

I also come across this Jo with a few children not even being given tests for this in the first instance and this is causing a big issue for them in later life. I was aware there was an outbreak in the USA but NHS has issued warnings and an update
https://www.gov.uk/government/publications/acute-flaccid-paralysis-protocol-for-the-case-note-review

Public Health England (PHE) has seen an increase in reports of unexplained acute neurological symptoms, particularly AFP, in 2018 in England. The majority of cases have been in children.

There is also this connection which I found interesting due to the upsurge in respiratory problems and they have mentioned ME in this article. We know this age range suffers an upturn in CFS at this age

https://www.theeagleonline.com/article/2019/04/aus-poor-handling-of-mold-threatens-student-health


How much is this all connected and how it all comes together is where we will get some answers? That and they cycle of PEM how the body fights to keep at an even balance ?

 

That is the sort of improbable scenario I was trying to imagine in this post:

To me, it seems possible that anything which is capable of aggravating symptoms is also capable or perpetuating them. However, if the improbable scenario Jonathan considers above were true, the question would still remain as to why it had not been picked up by CCI specialists. To me, it seems at least possible that most people with both CCI and ME would never see a CCI specialist (because of their ME diagnosis and/or symptoms) and it also seems possible that if there was only a very small number of people with ME and CCI who have seen CCI specialists, any improvement in ME symptoms following surgery might be overlooked or assumed to be coincidental.

[edit - typo]

 

In response to Jeff, Jen and Mattie, I echo what others have said. We must not conflate scepticism about the science with hostility towards individuals. Neither must we conflate scepticism about the science with scepticism about individuals’ experiences. I am puzzled by the science but I do not doubt the truth of anybody’s personal experience, and I am delighted for anybody whose ME has gone into remission, regardless of how uncertain and confused I may be about what caused it.

In order to understand ME it is likely that it will be necessary to generate many, many hypotheses, nearly all of which will prove to be wrong. The only way to ascertain the truth we are all seeking is to try as hard as we can to disprove every hypothesis that is generated. Only if we fail in our attempts to disprove a hypothesis should we begin to consider that it might be true. If treating any hypothesis with scepticism is considered unhelpful we are never going to get anywhere – and we are also going to risk undermining our credibility when arguing against CBT, GET etc.

FWIW, as I’ve written before, I welcome your decisions to write about your experiences. But I think it is important to emphasise all the unknowns, uncertainties and risks, as suggested (not demanded) by Michiel and others. Even if there was found to be a causal relationship between CCI and ME symptoms in some patients, I still believe that advice would be valid – just as it is not wrong to have worn a seatbelt just because one has not had an accident.

 

@Tilly I don't want to take the thread too far off topic but I read the article at The Eagle online (university newspaper staffed by students) which as you quoted says

I followed the links - the one embedded in the word 'suspect' leads to The Washington City online newspaper article titled 'The Mold War' in which I can't see any mention of ME or anything about mould in connection with it, and doesn't contain any evidence of it.

The other link is to the CDC website page for ME/CFS info.

It really doesn't support your concerns; I suspect it's a student who doesn't know very much (eta) about ME and hasn't done much research.

(eta first clause 'I don't want to take the thread too far off topic but')

 

There’s one more thing I would like to say before I retreat from this subject to rest.

Jen, on Twitter you said one of the reasons a disclaimer was not necessary was that “CCI is primarily based on objective testing.” Yet as I understand it, the imaging isn’t like a test that univocally says you have it or not. Like most imaging, the diagnosis of CCI requires interpretation of neurosurgeons and these may differ in some cases. The neurosurgeons Jeff lists on his website also require different imaging techniques to make their diagnosis. So procedures differ in making the diagnosis and that might lead to different outcomes. One patient on the Phoenix Rising forum said that he had sent his scans to two of the four neurosurgeons on Jeffs website and that one told him he had cranial settling while to other said his scans show no sign of instability. Something similar is true for the decision to recommend surgery or not. You said it wasn’t necessary to add a disclaimer because “No surgeon on Jeff’s list is going to operate on a patient without: imaging diagnostic of CCI, symptoms that indicate CCI is a problem, low Karaonfsky score (so good risk/reward ratio), informed consent.” That leaves it down to the judgment of the four neurosurgeons on Jeff’s lists. And I have some concerns about that.

I understand that such a list might be a good idea so that patients aren’t getting surgery from local doctors with little experiences with such complex procedures. But I have my doubts that this list was formed because these doctors are the most reliable and trustworthy with this procedure. Jeff said that he spent thousands of hours of research into choosing a neurosurgeon, but in the end, he chose Bolognese, a doctor who has been sued by several of his patients. To me, that suggests that Bolognese wasn’t chosen because he’s known to be more trustworthy but that other factors such as availability and willingness to do the surgery were of more importance. If I understand correctly another neurosurgeon called Jeffrey Greenfield is known to be an expert in craniocervical instability with a good reputation, but he didn’t make the list because he’s more conservative in making these diagnoses and surgeries.

Jeff advised patients to send their CT scans to the 4 surgeons listed on his website and told them not to bother with any other neurosurgeons because these might think of another diagnosis. That could mean that ME/CFS patients who suspect they might have CCI are directed to the neurosurgeons that are more inclined to make the CCI diagnosis and the decision to do surgery than other neurosurgeons. In fact, if you look at the list of ME/CFS patients who have come forward to have been diagnosed with CCI on forums such as Phoenix Rising, the names of Henderson and Sandu - who seem more respectable - or rarely mentioned. The vast majority seem to be going to Gilete and Bolognese and in several cases these two neurosurgeons also made the diagnosis of CCI.

As already mentioned, Bolognese is controversial because several patients with Chiari malformation have sued him for doing “unnecessary and experimental” surgery. Back in 2010, the hospital of Bolognese admitted that he would do surgeries were other neurosurgeons would choose not to (they claimed the success rate justified his method). Gilete seems less controversial but I find it strange that I can hardly find any publications of him. As a renowned neurosurgeon pioneering in this field, one would expect that he publishes once in a while. The patient on phoenix rising who had sent his scans to both Bolognese and Gilete was surprised that only the latter said he had CCI, suggesting that Gilete "may be overdiagnosing". He or she wrote: “What is concerning me though is that every single person I have come across online (now a substantial number since I began researching) who has been in contact with Dr G has been diagnosed with something structural and offered surgery.”

So it might be good to calculate for this in the risk/benefit analysis: that neurosurgeons like Bolognese seem more prone to do surgery than others. In doubt, maybe a second opinion could be sought for. I hope this information I've collated in this thread helps others to decide whether they should consider CCI or not.

[EDIT: Perhaps one last thing I should mention is that the outcome for fusion surgery in patients with CCI is generally good. Complications, although serious, happen only in a minority of cases. As my original blog post was a response to more optimistic accounts of CCI, it focused on the possible risks that were not always mentioned. That CCI surgery generally has a good outcome has now been added in the first post of this thread (EDIT 4).]

 

Yes, perhaps I should repeat this one more time as I'm signing off from this subject.

The discussion I've been having was NOT about whether CCI can cause ME/CFS symptoms, whether CCI surgery can alleviate ME/CFS symptoms or what the recovery stories of Jeff, Jen and others mean for the rest of us, etc. It was merely about providing accurate information on what is currently known about CCI and fusion surgery in the scientific literature.

I wish @JenB , @Jeff_w and @Mattie the best and hope they make a full recovery.