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

Tilly said:
I think there has been an upsurge in research and acceptance.
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I can't work out what your post is about @Tilly. You mention neurology and lungs but you quote me mentioning mast cells in arthritis. Mast cells have nothing of interest to do with arthritis.

There is an upsurge of blather about all sorts of things these days, and an acceptance of blather too - but I am not sure which upsurge you were referring to.
 
@Jonathan Edwards could you take a look at this video sometime and see if there is anything of relevance.

Dr. Fraser Henderson describes the results of his ongoing, long-term study following patients who received craniocervical fusions to correct instability as a treatment method for "cervical medullary syndrome", which includes syndromes such as Chiari, dysautonomia and more. These results are reported five-years out of initial fusion surgery and prove very promising as a means of treatment in patients whose symptoms stem specifically from cranial instability.
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it does also cover to what extent the patients improved but also any negatives; the extensive testing before they are considered for surgery etc etc also mentions MCA POTS, and improving CSF flow.
symptoms for diagnosis are around 21:00 .



eta:
altho Raymond Perrins hypothesis is dodgy to say the least, is there anything in these procedures that correlate to the 'Perrin technique' that may have a bearing on pwME given the more recent research findings.? (people diagnosed with ME also claim to have been cured using the Perrin technique therapy).
 
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Interesting video @Sly Saint.

Henderson comes across as a typical surgeon of a reasonably cautious type. His account of hEDS and the spine problems is very much parroted from the books and old school style. There is a conspicuous absence of a 'fresh critical eye' in his presentation but that may simply reflect talking to an audience that expects a conservative style. Unfortunately, his joke about men not getting trouble because of having bigger brains met with stony silence.

His presentation is very much about significant structural instability plus Chiari in EDS. He shows obviously abnormal scans. He confirms my belief that all you need is a flexion view because extension always reduces the threat to the brainstem, and also that ordinary x-rays will show most relevant slips because the measurements are done on bone outlines.

Another point is that surgery is not indicated unless there are 'neurological deficits' by which I presume he means objective signs specifically referrable to the CC junction. This to me is important. Without these specific diagnostic signs surgery seems to me to be very hard to justify.

He talks about CSF flow. However, I think this specifically relates to Chiari and syrinx problems. Chiari can be associated with hydrocephalus by squashing the fourth ventricle. This stops CSF getting out of the forebrain. Pressure on the upper cord may aggravate syringomyelia by increasing pressure in the abnormal cavity present in the cord. But in the absence of Chiari or syrinx, with just CCI I doubt CSF flux is relevant. It is not relevant for RA CCI as far as I know. I cannot see any relevance to cervical stenosis at a level like C6, which seemed to be implied by the Swedish guy in the video a while back.

Sorry, I am half way through and pressed post but no problem, I can do another post if needed.
 
Just a few more comments.

My take on the assessment of outcome is that it is very surgical and likely to be over-optimistic about some things. I note that several patients had further surgery - probably as a knock on effect of immobilisation affecting levels further down. He finishes off with what sounds like clever science but seems a rag bag of not very relevant findings. He brings in mast cells for no reason I can see.

But I guess the overall impression is that this is a series of cases with very obvious structural problems for whom surgery seems very reasonable. I suspect he is a good person to go and see if you have severe complications of EDS.

What I find a bit confusing is his reference to this 'cervical medullary syndrome' which includes so many non-specific symptoms that could easily encourage less cautious surgeons to operate without hard justification.
 
When in the midst of the hell that is ME, all we tend to think about is how much better it could be if we just got treatment. How much we just want to get our lives back -- lives that were so much better than they are now with all of its myriad sufferings. But it can be hard to remember that it can also get worse. Sometimes, a lot worse.

In 1998, I had surgery on my knee and ankle as I was spraining my ankle every 2-3 months and my patella was constantly slipping out of the patellar-femoral groove. Prior to that, I had what was probably undiagnosed ME. I couldn't work full-time due to frequent flu-like illnesses, IBS, pain, sleep issues, etc. So, basically, PEM. But my life was practically normal compared to what it became after that surgery. My surgeon didn't necessarily do anything wrong -- except, perhaps, do surgery in the first place. Within 3 years I could no longer work even part-time. In the twenty years since, several things I've tried with the hope that they would improve my symptoms have actually made them even worse and from which I've never fully recovered (or did after a few years).

But hey, I don't sprain my ankle anymore. I can't leave my home and spend most of my days in bed but no more ankle sprains!

Even healthy people can do poorly from surgery. In a population as sick and fragile as we are, there must be extraordinary evidence to merit something with such potential for harm.
 
I've mostly kept out of this conversation, largely because @Michiel Tack and @Jonathan Edwards have expressed my thoughts far more eloquently than I would, but I feel compelled to point out that I am amazed that we are still giving so much attention to what are, at the end of the day, small numbers of anecdotal reports of, variously, improvement, remission and recovery.

Let me be clear, again - I'm delighted for anybody who sees any kind of improvement from this collection of symptoms that we currently call ME (or any other variant of that name).

However, I would not, currently, want anybody to have surgery on their neck in the belief that this would affect their ME in anyway as we don't have the objective proof that this is the case - in the same way that I wouldn't want any person with ME to get their gallbladder removed, solely in the belief that it would improve their ME symptoms, just because I had mine removed recently due to gallstones and bile duct issues and my overall condition has improved.

If somebody is found to have CCI, or any other medical complaint that justifies surgery as an appropriate solution, then by all means they should have the surgery to address that complaint. In my opinion, if (the generic) you were to see improvement afterwards but still have symptoms of ME, as is the case with myself, then logic says you had ME as well as the other condition, and if your ME symptoms disappear then, logically, it is likely that you had something that looked like ME but actually wasn't (and congratulations, you've won the health lottery, you got your life back).

While they were investigating the use of Rituximab for ME, Fluge and Mella discouraged patients from seeking out rituximab as a treatment for ME until they had the evidence justifying, or not, its use - that was the responsible thing to do and not doing similar in this situation will be putting desperate patients health at risk.

CCI is something that would appear to deserve some serious investigation, what it doesn't need is anecdotal reporting that encourages the idea that serious surgery is a valid route to resolve ME.
 
There is a lot of anecdotal evidence that ME seems to be triggered by viral infections, and there seems to be some indications amongst this thread and others that surgery might also be a factor. In my wife's case she had a relatively minor operation, together with a nasty flu bug post op, and when she seemed to not be recovering properly from her surgery, it transpired she had actually gone down with ME during this period.

So just speculating here, and thinking about Phair's metabolic trap, which he describes as having the characteristics of a bistable. A bistable is akin to a switch, with two very stable states, and a hair-trigger point in between that is neutrally stable. If you stay well away from the mid-point, it always remains in whichever stable state it is currently in. Phair I believe says that healthy cells normally remain well away from the neutrally stable point, and remain firmly in their stable state. But under some extreme conditions, the cells can get pushed to the neutral point, and beyond, whereupon they then pull themselves into the unhealthy state. Worth considering maybe that for any bistable once at the neutrally stable point, just the slightest "noise" can flick the switch into one or other of its stable states, on or off, healthy or unhealthy perhaps.

The thing is, if you have a bistable switch, whatever effort (using the word 'effort' loosely here) it took to get it to the neutrally stable point from one stable state, can be much the same effort needed to get it back to the neutrally stable state from the other stable state. So if the stresses of surgery could push cells from their healthy state to just past the neutrally stable point, so they flick over to their unhealthy state, could it be that in some cases further surgery could push them back to their neutrally stable state, and perhaps this sometimes allows them to then flick back to a healthy stable state?

Just musing. Any thoughts @Jonathan Edwards?
 
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obeat said:
If a signalling problem in the brainstem/ brain contributes to ME , how do we investigate it and who's going to do it? Surely this is the realm of neurology?
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Start funding neurologists.

Stop funding research into peripheral blood biomarkers because they have lower grant bids. Same thing for fMRIs. Blood tests and the environment within the CNS are not 1:1 correlates at all, and fMRI in general is inactionable on the off chance it is remotely substantive. Valcyte is being used for a treatment, and it does not even reach the blood brain barrier in therapeutically relevant concentrations for EBV/CMV.

Stop equating rapid post-viral CFS and autoimmune post-baby metabolic immune diseases as similar illnesses so you can recruit patients easier.

Molecular biologists are funded for irrational reasons to patient, but rational to the marketplace:
  • past expertise in an unrelated field being conflated with expertise in this illness (see: Pauling, Linus; Mullis, Cary; others)
  • temporally increased during the HIV outbreak in the 1980s
  • the DoD funds it in conjunction with GWI, which actually does have a peripheral component (ACh antibodies)
Dynamic contrast imaging, blood brain barrier permeability testing (actual peripheral biomarkers like occludin and sphingosine antibodies), t-cell ablative treatments, PET scans like Nakatomis, and recombinant pilot trials.

You could submit a cytokine network analysis of CFS study word for word from the 1980s and probably get it in somewhere.

As to this intervention, if placebos of double-blind administration of drugs are reaching 35%, a sham surgery would report more than 50% improvement in CFS patients, which would be sustained for over a year.

That seems high, and accusatory. But the ball does not lie.
 
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Andy said:
While they were investigating the use of Rituximab for ME, Fluge and Mella discouraged patients from seeking out rituximab as a treatment for ME until they had the evidence justifying, or not, its use - that was the responsible thing to do and not doing similar in this situation will be putting desperate patients health at risk.
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And certainly they didn’t carry out a multi-platform media campaign spreading cause and effect misinformation, or have a website that expresses their opinion without any evidence or have media styled ‘interviews’ of anecdotal accounts and recommended routes to get the treatment ahead of it having any proof of efficacy. I also note that replies to questions have been weak and lacking in scientific rigour at times (or selectively ignored), but in the majority of cases there is a convenient link to drive traffic to the “interview” web site.

My thoughts after giving the benefit of the doubt and listening to the argument back and forth on this and other threads, is that this is becoming more and more subjective opinion rather than anything to do with science. That isn’t to say that science can’t be applied to investigating whether this has merit...just that we are rushing ahead ignoring the important bit you need to do first.

Regarding the impact on the media and asking reasonable questions of my own (which in the last case was selectively ignored) i am now firmly of the opinion that this is a deliberate media campaign using prominent status and the expertise gained from a background in journalism and politics to spread the message far and wide. I certainly don’t recognise any science being involved here despite the protagonists trying to weave in pseudoscience to give the story credibility.

I’m afraid given the amount of money and risk involved to a vulnerable group I find this type of behaviour highly irresponsible.

I am still worried about the credibility of our advocacy efforts when a prominent person who has brought about so much good and positive change is now resorting to a non scientific approach .....it just looks really bad from where I’m sitting and highly contradictory.
 
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Hi @arewenearlythereyet. You can name me. I am right here.

I am sorry I missed your question and am even more sorry that the fact I did not answer it has now made you “firmly of the opinion that this is a deliberate media campaign.” What was your question? I’ve received thousands over the last few days and as I’ve already explained, can’t respond to and may not even see every question. I wish that I could.

As for resorting to a non scientific approach, can you please explain what you mean? Almost every chance I get, I call for more science. The best thing in my opinion about these cases is not that this is going to be a path for everyone, but rather that they may have something to teach us about PEM and the brain, something that may well also bear out in the imaging studies current underway. As Ron Davis always says (quoting Darwin) “the first act of science is to observe.” That is all I am asking for and all I hope will come from all this. That researchers will look at our cases and try to ascertain what may be specific about them (CCI is unlikely to be everyone’s mechanism) and what, if anything, might be more generalizable, e.g., this idea I talk about re: how there may be many mechanisms, some structural, some biochemical, that could compromise the brainstem/autonomic nervous system and cause the symptoms of ME. Understanding the pathology in PwME w/ CCI might help us locate the pathology/damage in patients whose symptoms are due to other causes. I am not a researcher. I don’t have a lab or a clinic. I have no power or capacity to actually take action on any of these ideas. All I can do is try to offer that qualitative, observational anecdata as clearly and precisely as I can and be extremely modest in my claims when it comes to any kind of generalizability outside of my case. This is why I try to be careful to underline that I am only one patient (I have said this repeatedly) and to talk about *my case.* I do, where relevant, as in the case of intracranial hypertension, link to existing research. I have no idea how any of this is inconsistent with science.

My second hope is that someone who might actually have CCI is empowered to pursue the diagnosis. This matters. I would never have been diagnosed but for Jeff. I should have been diagnosed in 2012 and have been spared seven years of hell. If I can spare anyone else that same hell, I would like to.

I’m glad you think my work has helped to bring about so much good and positive change. I have to say, there has always been a lot of opposition to everything I have ever tried to do, including all these things you say have resulted in positive change. A part of it is that it’s hard to see what doesn’t yet exist. I’d just ask that you reserve judgment or at least, reassess all this once I’ve had a chance to finish publishing my account. This is still very early days.
 
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JenB said:
I have no idea how any of this is inconsistent with science.
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Dear @JenB,

I think this is the problem. You are not a skilled neurologist or a neuroscientist so you are unaware of the many inconsistencies in the explanation for your story that you and Jeff are proposing.

Biomedical science is not just talk using biomedical terms, it is about explanations that are free of inconsistencies and stand up to enquiry. In the context of the information currently available I find a lot of inconsistencies.

Do you know of a skilled neurologist or of a neuroscientist who endorses your view of the situation? If so it would be of great value to be able to engage them in discussion. If not I think you have to ask yourself whether you and Jeff are really in a position to be making the suggestions you are making. Wouldn't it be better to have someone who understands the subject in depth putting ideas forward?
 
Michiel Tack said:
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).]
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I’m really glad you found evidence that outcomes from fusion surgeries is generally good. Is the core concern, then, less surgery itself and more risk of misdiagnosis?

I think the reason so many patients have opinions from Gillette and Bolognese is that they both do remote consultations. Henderson and Sandu require an in-person appointment to even look at your imaging, which is inaccessible to a lot of people. All of these surgeons (and others) are frequently discussed in the EDS groups. It seems the majority of the patients have had their surgeries with either Henderson or Bolognese.

Given that we have absolutely no idea what the rate of structural problems is in the community and the vast majority of patients have never been assessed, we have no way of knowing what the rate should be, especially among those who might self-select to be assessed based on their clinical picture. I think it’s impossible to know whether these surgeons are overdiagnosing. That is why trying to understand the prevalence of at least intracranial hypertension and cervical stenosis (for which there are published case studies) and probably for CCI as well stand out to me as really important, basic initial work to do.
 
Jonathan Edwards said:
Dear @JenB,

I think this is the problem. You are not a skilled neurologist or a neuroscientist so you are unaware of the many inconsistencies in the explanation for your story that you and Jeff are proposing.

Biomedical science is not just talk using biomedical terms, it is about explanations that are free of inconsistencies and stand up to enquiry. In the context of the information currently available I find a lot of inconsistencies.

Do you know of a skilled neurologist or of a neuroscientist who endorses your view of the situation? If so it would be of great value to be able to engage them in discussion. If not I think you have to ask yourself whether you and Jeff are really in a position to be making the suggestions you are making. Wouldn't it be better to have someone who understands the subject in depth putting ideas forward?
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I still don’t understand. What have I said about my case is inconsistent? And inconsistent with what? Also, what suggestions have I made? You mean that we should research this? That the brainstem and adjacent structures might be important? The latter is hardly a new idea.
 
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JenB said:
I still don’t understand. What have I said about my case is inconsistent?
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Jen, I am truly delighted with your current remission. Long may it last.

But you surely have to admit that your case is puzzling.

I remember in Unrest watching you barely able to move or speak some times, yet running around in the desert and saying it was mold causing your symptoms, then you went on antvirals and told us your symptoms were significantly improved by these, so it was persistent virus causing your ME.

Then you tell us that during your thyroid surgery your neck was damaged and you developed neurological CCI/AAI symptoms as a result of this which were reversed by the neck surgery. And as a bonus, all your ME symptoms have vanished too.

That's wonderful, and if you were simply to present that as an interesting mystery, and suggest that more research be done, that would be fine.

My problem is this statement:
''I know that CCI caused my PEM and other ME symptoms.''

No. You can't know that. All you know is that after the surgery your PEM went into remission.

And now Jeff on his website is telling everyone with ME, whether they have specific CCI/AAI symptoms as you and he did, or whether they only have ME symptoms without any neurological signs, should get the specialist neck scans too.

But surely no responsible surgeon will do CCI/AAI surgery simply on the basis of scans and ME symptoms. I watched one of them on video yesterday. He made it absolutely clear that the surgery is the last resort and only done if the neurological CCI/AAI symptoms and signs are clear and disabling as yours and Jeff's were, not on the basis of scans alone.

Neither of you has scientific backing for saying PEM, as seen in ME, and without any neurological signs, is caused by CCI/AAI. We simply don't have the evidence for that. All we have is two people's very interesting stories.
 
Trish said:
Jen, I am truly delighted with your current remission. Long may it last.

But you surely have to admit that your case is puzzling.

I remember in Unrest watching you barely able to move or speak some times, yet running around in the desert and saying it was mold causing your symptoms, then you went on antvirals and told us your symptoms were significantly improved by these, so it was persistent virus causing your ME.

Then you tell us that during your thyroid surgery your neck was damaged and you developed neurological CCI/AAI symptoms as a result of this which were reversed by the neck surgery. And as a bonus, all your ME symptoms have vanished too.

That's wonderful, and if you were simply to present that as an interesting mystery, and suggest that more research be done, that would be fine.

My problem is this statement:
''I know that CCI caused my PEM and other ME symptoms.''

No. You can't know that. All you know is that after the surgery your PEM went into remission.

And now Jeff on his website is telling everyone with ME, whether they have specific CCI/AAI symptoms as you and he did, or whether they only have ME symptoms without any neurological signs, should get the specialist neck scans too.

But surely no responsible surgeon will do CCI/AAI surgery simply on the basis of scans and ME symptoms. I watched one of them on video yesterday. He made it absolutely clear that the surgery is the last resort and only done if the neurological CCI/AAI symptoms and signs are clear and disabling as yours and Jeff's were, not on the basis of scans alone.

Neither of you has scientific backing for saying PEM, as seen in ME, and without any neurological signs, is caused by CCI/AAI. We simply don't have the evidence for that. All we have is two people's very interesting stories.
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Important!

Let us be very happy for anyone who recover/remission. We should stay curious, hope it draws some attention among many that can be of good for the community in general, but we should all be very sober about CCI/AAI and the connection to ME.
 
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