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

[obeat]

@JenB Do you know if any of the surgeons involved plan to publish these case histories?

 

[Jonathan Edwards]

I would argue that if an evidenced account flies in the face of our current understanding then our current understanding is obviously incomplete, inadequate or just downright wrong. I don't think it's particularly helpful or informative to provide the scientific background if the personal account you're about to give is only going to undermine it and demonstrate the current understanding to be unsatisfactory or incorrect.

That does not seem the right balance of argument to me, @Stewart.

We don't actually have an evidenced account of cervical surgery correcting a cause of ME/CFS symptoms - which is what is claimed has occurred. We have no pictures. I have asked for those involved to press the health professionals to publish what would be quite amazing evidence of CCI in a majority of ME cases. Nobody has responded. We have no evidence base for improvement being due to the surgery per se. Remember that a doctor in Norway said she had recovered completely with rituximab. It now seems pretty certain that her recovery was not related to rituximab.

Nobody has questioned the evidence of improved symptoms and well being. The issue is the attribution to a very risky procedure on the spine.

So nothing suggests that our current understanding is wrong. We always knew it was incomplete and inadequate for ME/CFS but I don't see these reports changing that.

And those giving the stories have provided liberal accounts of their health professionals' version of the 'scientific background' but it is not a background that I, as a one time international authority on joint physiology, recognise, or one that I think neurosurgeons around the world would recognise.

I think it may be best for me to say no more about this. I am sorry that some people may feel that the discussion has been hostile, irresponsible or aggressive. I am not aware of being any of those things. I want to get at the truth. I have spent quite a lot of the last year studying the evidence in relation to therapist-delivered treatments to prepare a witness statement for NICE. Nobody pays me to do that. I see no reason not to use the same standards for all proposed treatments for ME/CFS.

 

[Barry]

There are facts, and there are what can seem like terribly obvious extrapolations from those facts, so much so it can sometimes be very hard to realise they are not themselves facts. Science is about getting to the truth, completely independent of what might seem obvious or otherwise. PACE is a perfect illustration of scientists being misled by what to them seemed obvious.

 

[JenB]

@JenB Do you know if any of the surgeons involved plan to publish these case histories?

My ME specialist is planning to. I think he is waiting until there are a sufficient number of cases for a case series and until enough time has elapsed.

I don’t think our surgeons quite understand the import of all this because again, they are completely ignorant of PEM or ME or any of our concepts or experiences. For them, it’s just another day in the office!

Also, these are all people with massive waiting lists who are extremely busy and whose focus is clinical care, so I don’t expect anything to happen quickly.

 

[Stewart]

I think it may be best for me to say no more about this. I am sorry that some people may feel that the discussion has been hostile, irresponsible or aggressive. I am not aware of being any of those things. I want to get at the truth. I have spent quite a lot of the last year studying the evidence in relation to therapist-delivered treatments to prepare a witness statement for NICE. Nobody pays me to do that. I see no reason not to use the same standards for all proposed treatments for ME/CFS.

Jonathan - for my part I hope you will go on participating in these discussions. You've spoken in the past (and I'm paraphrasing here) about the responsibility you feel to speak up when you see what you consider 'unscientific nonsense' being bandied around - and I greatly appreciate the fact that you do that. In this case you've made it very clear that the explanation given for Jen's remission doesn't fit your understanding of hypermobility or CCI, and so you feel you have to say something. You obviously understand these issues far better than me - probably far better than anyone else on this forum - so it would be a loss to all of us if you bowed out of the discussion.

Now that I've buttered you up I would just add a note of caution though: sometimes we can be too confident in what we think we know and that can blind us to other possibilities. I can illustrate what I mean using a story that you told earlier in this thread...

At least in the UK until 1978 nobody was much interested in hypermobility. Then Rodney Grahame got interested. peter Rowe was also getting interested around that time or maybe a bit before. When we started the clinic at Guy's there was no symptom pattern recognised - we just collected people who were hypermobile. Then Rodney started talking about people with hypermobility having pain from it.

But how did he know that? The problem is that he only ever saw hyper mobile people referred to a rheumatology clinic. People are referred to a rheumatology clinic because they have pain.

Anyway, the story at that time was that the pain was due to the increased laxity in ligaments causing repeated low grade trauma. Rodney continued his hypermobility clinic for another forty years while I followed other things. Some time around 1990 the story changed. It seemed that people with hypermobility had pain all over - they seemed to have 'fibromyalgia'. They seemed to be hypersensitive to stimuli. It seemed that the pain could no longer be explained just buy the low grade trauma.

And the something else changed. Maybe around 2000 people started saying that people with hypermobility had chronic fatigue. Back in 1979 nobody had ever mentioned being fatigued. So why now? I am pretty sure because Rodney had gained a national reputation for seeing people with hypermobility and pain and more recently pain sensitivity and fibromyalgia and so he found his patients were fatigued - simply because those were the ones physios and doctors thought he was the expert for.

This continued to the extent that when Rodney retired those who had helped out in the clinic reported that, despite being a hyopermobility clinic, all the patients had the symptoms people lump under 'fibromyalgia'. In 1979 nobody had those symptoms.

I think Rodney may have held on to the 'hypermobility syndrome' term longer than some others but this group of patients are now often referred to as hypermobility type EDS or hEDS.

My strong impression is that the history of 'hEDS' is dominated by this circular self-reinforcing referral bias that creates whatever 'syndrome' the specialist says they are interested in. The promotional material I have seen on the net regarding CCI certainly looks that way.

So I think it highly likely that this new 'spinal medullary syndrome' is nothing more than the same self-reinforcing referral pattern. And it is not just that patients with these symptoms get referred. They see a physio who has heard of the syndrome and who encourages them to believe they have this syndrome so when they turn up at the neurosurgeons office they are another perfect case!

That might seem far fetched but, as I say, my experience with 'hEDS' in the UK is exactly that. When Rodney's clinic got overfull and the hospital admin insisted on the referrals being seen in a specified time the rest of us got a taste of his referrals. I got a few. They had been 'educated' by their physios to believe that they had pain due to hypermobility that required special management that only professor Grahame could provide.

About 7 years ago, I was one of those patients you were talking about. At that time I was working in London but finding it difficult to stay in employment given the pain, fatigue and cognitive issues I was dealing with. My then physio suggested that my health problems might be caused by hypermobility in my spine and wrote to my GP asking them to refer me to Professor Grahame's hypermobility clinic. For reasons that were never explained to me - but I suspect were financial - my GP referred me instead to the rheumatology department at the local hospital.

I saw a consultant rheumatologist - I won't name him but I suspect he's known to you - and explained that I'd been referred to investigate whether my health issues were caused by my hypermobility. He immediately shut down that possibility, saying "I don't believe that hypermobility can cause the sort of issues you're complaining of". This was before he'd even examined me (which he subsequently did, begrudgingly admitting that I was mildly hypermobile). As I was complaining of back pain (amongst other things) he sent me for an MRI of my spine. I never saw him again. When I got my MRI results I was seen by one of his juniors, who told me that while there were some issues with my spine that was to be expected at my age and there was certainly nothing that required further attention. I went through the rigmarole of getting a CD of my scan results - I'm not sure why I bothered - and gave the matter no more thought. Just the latest in a long line of dead end NHS enquiries.

My health didn't improve and I gave up work a few years later. I had to move out of London and became financially dependent on family members. I carried on seeing physios from time to time - none of whom were able to help me get to the bottom of what was wrong with me. Then a few months ago my current physio said to me "There's something very strange going on with your spine. I wish I had an MRI to look at..." I dug out the CD of MRI images from years previously and took it to my next appointment. She immediately saw something that the rheumatology department had either missed or considered unimportant - foraminal stenosis at two consecutive levels in my cervical vertebrae.

She got my current GP to refer me to a neurologist for an up-to-date MRI - which confirmed that the issue was still there and almost certainly contributing to the back pain I'd been suffering for most of the previous decade. The neurologist told me that an operation - involving the removal of a disc - was the only way to proceed. I relayed this back to my physio, who told me not to rush into surgery, saying "Given your symptoms and your history I think there's something else going on that we haven't found yet."

I've since had a further MRI scan which has revealed further issues in my spine. I don't want to say anything about that at this stage because I'm still in the process of getting a diagnosis and I have no way of knowing whether these issues are a contributing factor to my ME. But the thought that has kept going through my head in recent weeks - even ahead of my most recent MRI - has been "If only that bloody consultant rheumatologist had taken me and my physio seriously this could - and should - have been discovered years ago. Instead he was offhand and dismissive and as a result of him assuming he knew better I've suffered years of pain, lost my career, lost my independence, lost friendships..."

What I'm trying to say - in a long-winded way - is "Please don't be like that rheumatologist." Please don't make the mistake of automatically assuming that just because this doesn't fit with what you 'know' that there can't be anything to it.

We don't actually have an evidenced account of cervical surgery correcting a cause of ME/CFS symptoms - which is what is claimed has occurred. We have no pictures. I have asked for those involved to press the health professionals to publish what would be quite amazing evidence of CCI in a majority of ME cases. Nobody has responded. We have no evidence base for improvement being due to the surgery per se. Remember that a doctor in Norway said she had recovered completely with rituximab. It now seems pretty certain that her recovery was not related to rituximab.

Nobody has questioned the evidence of improved symptoms and well being. The issue is the attribution to a very risky procedure on the spine.

So nothing suggests that our current understanding is wrong. We always knew it was incomplete and inadequate for ME/CFS but I don't see these reports changing that.

And those giving the stories have provided liberal accounts of their health professionals' version of the 'scientific background' but it is not a background that I, as a one time international authority on joint physiology, recognise, or one that I think neurosurgeons around the world would recognise.

I agree with you that we don't have anywhere near enough information on these surgeries to make an informed judgement. But so far we're only aware of a couple of instances where people with ME symptoms have had this treatment - it's only been a week since Jen went public - so it seems a bit premature to rush to judgement at such an early stage.

Caution is understandable, questions are to be expected and scepticism is probably necessary. And people should certainly be discouraged from pursuing surgery at this stage - I've got no problem with any of that. What has surprised me has been the way that some people - and I'm not just talking about you here Jonathan - have seemed in such a rush to say "This explanation doesn't fit with what we know, so therefore it must be wrong." I accept the explanation doesn't fit with what we know and it's therefore certainly possible that the explanation is wrong - but isn't it also possible that it's what we currently 'know' that's wrong? That our understanding of what we call 'CCI' and how it manifests is not as complete as we think it is?

The neurosurgeons who have done the most work in this area believe they've discovered a 'new' symptom cluster which can be ameliorated with surgery. There is some overlap between this symptom cluster and ME (how great an overlap depends on which of these neurosurgeons you talk to, which I acknowledge is far from encouraging). And now several ME patients have experienced symptom remission after treatment. It seems to me that what's needed now is some robust research to investigate whether any of these neurosurgeons' claims can be proven - and that's going to take time to come about.

I just don't think it makes any sense to rubbish or downplay the possibility of there being a link before it's even been looked into. To my mind that's what my consultant rheumatologist did all those years ago. Something has led to an improvement for Jen and Jeff - we should try and find out what it was, rather than pour cold water over the accounts that they and their surgeons have given.

(Sorry this has been so long. I'll shut up for a bit now)

 

[Jonathan Edwards]

Dear @JenB
With due respect to Dr Kaufman, I don't see any ethical basis for further surgery on PWME and I would advise strongly against it until we have the background information that would justify it.

My understanding is that in your case the surgery was considered indicated on grounds of symptoms attributable to CCI, not to ME. You say your ME has gone into remission but my understanding is that this was a surprise.

The situation for the others is less clear to me but again my understanding is that the surgery was indicated by symptoms attributed to CCI.

Now if people have symptoms attributable to CCI on standard criteria then surgery may be indicated but I don't see that has anything specific to do with ME unless it is true that PWME, unknown before, have a high prevalence of CCI.

We have heard suggestions that a high proportion of ME patients getting imaging are being told they have cervical problems. That is complicated by the fact that some of those may not be CCI, but Chiari or stenosis, the last of which would not be expected to have anything to do with brainstem problems. However, if there really is a high rate of CCI in ME then it deserves publishing right now in a high profile journal. All those involved in the imaging should want to do that before any more surgery is contemplated. If the cases imaged so far cannot provide data then a blinded study of a further cohort should be done. Until those images are publicly available to review by experts I would see further surgery on the spine directed at symptoms of ME as unethical and I would be prepared to say that in a legal context.

All this may sound overcautious but our discussions have already revealed the fact that the presence of abnormalities on imaging in ME and fibromyalgia is an area of controversy. If one study finds 50% Chiari and another finds no more than normal we are clearly in an area where quality control may not be guaranteed.

If cases are to be operated on there should be prospective registration in a trial. To say that surgeons are too busy to take enough interest in their patients' safety to document things properly doesn't say much for the surgeons. They should be absolutely tuned in to PEM and ME symptoms if they are going to operate based on those symptoms.

 

[Jonathan Edwards]

Dear @Stewart

She immediately saw something that the rheumatology department had either missed or considered unimportant - foraminal stenosis at two consecutive levels in my cervical vertebrae.

I don't know how old you are but by middle age we all have foramina stenosis at a couple of levels in the cervical spine. And foraminal stenosis does not cause back pain. It causes pain and tingling in the fingers. Sorry to be a typical rheumatologist but there is nothing in your story to suggest to me that anybody missed anything of significance.

If you had seen Professor Grahame you might well have got diagnosed with hypermobility and sent off to the physio for some nice exercises to strengthen you up - yes GET!!!

The neurosurgeons who have done the most work in this area believe they've discovered a 'new' symptom cluster which can be ameliorated with surgery.

I have not delved into this deeply but I have delved enough to discover that this 'new syndrome' comes from a 'think-tank' supported by the Chiari and Syringomyelia Foundation (CSF) which runs its own academic meetings, a bit like IiME. The question is what sense exactly are these the surgeons 'who have done most work in this area'. Are they the experts on CCI or are they a group of surgeons who have found the CSF a good source of business? Why are patients being referred to Barcelona for a procedure that is routine in university hospitals in all western countries? And as Michiel pointed out the only published series by one of the surgeons involved suggests that ME-type symptoms do not improve much in EDS cases.

I just don't think it makes any sense to rubbish or downplay the possibility of there being a link before it's even been looked into.

Why doesn't it make sense to downplay something that sounds very implausible based on a lifetime of experience with joint disease? And in the post above I have indicated that I am pushing harder than anyone for this to be looked into. The problem is that the health professionals involved are not gathering and making public the data we need.

I am fascinated by what it is that has led to an improvement in Jen and Jeff. I think this is a hugely important observation. But I see no reason to jump to the conclusion that it was due to correcting spinal instability. That may sound tortuous but I have been in biomedical science long enough to know that the right explanations are often not the most obvious ones.

 

[Kelly M.]

Saying "a very small minority" may be mischaracterizing the stats. So far out of 20 ME/CFS patients tested by MRI with flexion, extension and rotational views, over 90% were found to have CCI/AAI.

Now, at this stage it's not clear if those 20 individuals constitute a random sample of ME/CFS patients, or whether they self-selected perhaps because they felt they might have some neck issues. But if it can be considered a more-or-less random sample, then this 90% not a small minority, but the vast majority.

I have looked at the following thread that was linked on this thread to another forum.

https://forums.phoenixrising.me/threads/tracking-cci-aai-mri-treatment-outcomes.62720/

Starting this thread to keep track of ME-CFS patients who have been tested for craniocervical instability / atlantoaxial instability / chiari / spinal stenosis.
Because the number of patients that test positive is getting significant now, especially considering the low number of patients tested.

It appears that out of 29 votes, 18 have indicated that they have tested 'positive'.

I am confused by the significance of anything here. Looking at that thread, it appears that 5 or 6 of those 'positive' members recently joined that forum to specifically post about CCI ... All it means that 18 people on this forum have had positive scans for CCI, AAI, chiari, spinal stenosis and that's all you can say. It is in no way a representative sample of anything other than 18 people on a particular forum have structural neck issues. There are large numbers of people with other diagnoses of varied illnesses/diseases that would also indicate they have been diagnosed with CCI, AAI, chiari, spinal stenosis.

I was under the impression from a post elsewhere that Chiari should be considered a differential diagnosis which would likely rule out ME being diagnosed.

I gather that suggesting misdiagnosis is a sensitive issue but is it not possible that these disorders that have been mentioned here are inducing symptoms that are ME-like but not actually ME itself. Can we not discuss this? If neck surgery/traction relieves a person of all ME symptoms, is it not possible that the person was misdiagnosed and why is that a problem and why should we not we discuss this?

For example, it's entirely possible that people have ME and CCI as co-diagnoses. It's possible to be misdiagnosed with ME-like due to symptoms of another illness/disease/condition. So we have a patient who was relieved of all the symptoms of ME with surgery. We have another who has had some relief but still has many symptoms. There might be another who has no relief of any symptoms post-surgery. All three have an ME diagnosis, why the differences, what accounts for the differences? What does research indicate and so on? Can we not dig down and try to figure out why even if some of the conversation might be uncomfortable?

Let’s say I was diagnosed by an ME specialist because my symptoms fit most of the criteria. Then later I find out I have some heart abnormality that was previously undetected. Let’s say I had heart surgery and post-surgery due to a successful surgery that all my ME symptoms had totally disappeared and did not ever resurface. I think I would in all honesty say I had an undiagnosed cardiac condition all along and would consider my ME diagnosis as incorrect. I would be a little upset if people started insisting my symptoms were down to having ME. No matter what the discussion somebody might feel upset. Misdiagnosis related to ME isn’t uncommon from what I have read and seen. Misdiagnosis is common period. It is just a medical fact and clearly getting down to what ME is and isn’t is a goal that can be gotten to by discussion of things that might be stressful or uncomfortable.

There are many things that just don’t make sense and questions and answers can only be helpful.









.

 

[Jonathan Edwards]

is it not possible that these disorders that have been mentioned here are inducing symptoms that are ME-like but not actually ME itself.

I agree that it is worth digging down to try to understand. I am not quite sure what you are wanting to imply by some of your later questions but the big above I can comment on.

CCI was part of my practice as a rheumatologist. No patient of mine with CCI had a presentation that one would confuse with ME and I had never heard of such a suggestion prior to this recent discussion. The two conditions share some individual symptoms like pain but that does not mean much. I never came across anything like the picture of ME, in the round, in CCI cases.

And from a neurological point of view there is no reason to think CCI would produce brain fog or PEM or light sensitivity. It might possibly produce sleep disturbance but one would expect that to be part of a general bulbar syndrome, which PWME do not have.

 

[Adrian]

CCI was part of my practice as a rheumatologist. No patient of mine with CCI had a presentation that one would confuse with ME and I had never heard of such a suggestion prior to this recent discussion. The two conditions share some individual symptoms like pain but that does not mean much. I never came across anything like the picture of ME, in the round, in CCI cases.

And from a neurological point of view there is no reason to think CCI would produce brain fog or PEM or light sensitivity. It might possibly produce sleep disturbance but one would expect that to be part of a general bulbar syndrome, which PWME do not have.

If someone had both ME and CCI could the CCI interact with an ME process and make it worse?

 

[Jonathan Edwards]

If someone had both ME and CCI could the CCI interact with an ME process and make it worse?

Now that is what I call an inspired question.

It is hard to see how CCI would interact with a general immune or metabolic problem.

But suppose that ME was a bit like narcolepsy except that rather than being a failure of the hypocretin cells in the hypothalamus it is a problem of reprogramming of cells in the nucleus coeruleus, which controls sleep in a different way. OK the coeruleus is up in the pons so maybe the problem is in a related tract in the medulla but it could possibly be subject to pressure from Cci.

We then completely forget all the stuff about cervical medullary syndrome and focus on what happens if there is a specific medullary problem that generates ME that is subject to aggravation by pressure from CCI. The idea would be that some specific imbalance in signalling in this medullary tract would have the unique cascade of effects we call ME, with PEM and sensory sensitivities involving cranial nerves miles away in the upper midbrain. Maybe the whole thing would relate to 'data filing during sleep' not being switched on. Compression of the medulla might then provide an aggravating factor that perpetuated a set of sym[toms unrelated to the syndromes seen with pressure on a normal medulla.

I am not sure I buy this but it has a certain congruence to it of the sort we desperately need.

 

[Trish]

I am not sure I buy this but it has a certain congruence to it of the sort we desperately need.

I don't understand the details of what you are saying, but if there were something about having both CCI and ME that made the ME worse by some interaction, then removing the CCI problem should still leave the person with ME, but not as bad. I can't see how it would completely vanish the ME.

 

[Diluted-biscuit]

Has anyone heard if someone with ME has recovered after some other kind of serious surgery before? I wondered if there was anything about the surgical procedure itself that could cause remission in some cases?

 

[Jonathan Edwards]

I don't understand the details of what you are saying, but if there were something about having both CCI and ME that made the ME worse by some interaction, then removing the CCI problem should still leave the person with ME, but not as bad. I can't see how it would completely vanish the ME.

Valid argument. But suppose the CCI had been there throughout and the ME only persisted because of medullary compression?

I don't think I think this likely but it just about makes sense.

The other thing is that if the tract that is misprogrammed and controls the ME is fed by neck proprioceptive impulses - basically a major component of position sense - then immobilising the key pivot point in the neck might stop the process persisting. But that is more what we discussed before.

 

[Guest 2176]

I would say that makes my point for me. Yes, anecdotal evidence led to the rituximab trial, but at the same time irresponsible doctors offered expensive rituximab treatment and patients listened to the anecdotes and wasted a lot of money and potentially put their health at risk by obtaining treatment outside the trial context, before those trials were completed and proved negative.

The difference is that no ME doctor is offering this as a treatment for ME. What they are doing is screening their ME patients for this to see if they have it, then referring them to doctors who tell them that the surgery is probably not going to resolve their ME

As opposed to rituximab which was offered with no evidence of autoimmunity or B cell dysfunction or whatnot.

We have heard suggestions that a high proportion of ME patients getting imaging are being told they have cervical problems. That is complicated by the fact that some of those may not be CCI, but Chiari or stenosis, the latter of which would be expected to have anything to do with brainstem problems. However, if there really is a high rate of CCI in ME then it deserves publishing right now in a high profile journal. All those involved in the imaging should want to do that before any more surgery is contemplated. If the cases imaged so far cannot provide data then a blinded study of a further cohort should be done. Until those images are publicly available to review by experts I would see further surgery on the spine directed at symptoms of ME as unethical and I would be prepared to say that in a legal context.

Jen could correct me on this, but I don’t think that anyone involved is pushing surgery as an ME cure. That would be unethical at this time. What I believe is happening is that one doctor is having his patients screened and referred for this, with the understanding that any relation to ME symptoms is an entirely new area.
I don’t see referring people for the testing as necessarily at all unethical. It’s true that people are possibly going to spend money (depending on their insurance and the specific kind of imaging) on this testing, but then again, if people are going to specialist doctors, they are probably already spending much more than the cost of an upright mri. So I guess there’s a risk that people could waste 600$ or a little more than that. I don’t want to downplay that risk, but compared to the risk of missing a diagnosis that could lead to a possible treatment, I consider it negligible.

I am glad that we all have the same goals here, though, and all agree that what is needed is more research. I guess we may all differ on our opinions of how to go about this, but ultimately this discussion on this forum probably bears little weight on whether or not research will be done. But we all want the same thing.

 

[Jonathan Edwards]

I don’t see referring people for the testing as necessarily at all unethical.

No absolutely not. That is what I am begging those involved to do - get some imaging and publish it. What I consider unethical is referring for surgery.

And I don't really buy the idea that nobody is being referred for surgery on the neck to cure ME. Somebody is referring for surgery. Apparently the surgeons are too busy to know what is going on. So presumably the physician thinks that PWME might benefit from surgery, without having documented the imaging evidence that would suggest that this is a sensible path to follow. If radiologists have fancy machines to do standing up MRI to show CCI they are quite likely to report CCI, just like the path labs that like to report strange autoantibodies. Maybe the quality control is good but reading Henderson';s review suggests to me that it is all pretty vague. He says that the imaging is not in itself diagnostic without signs. What were the signs?

 

[Hip]

It appears that out of 29 votes, 11 have indicated that they have tested 'positive'.

I think you might have misread that: on the PR poll as it stands, 18 have tested positive for CCI/AAI, and 11 tested negative. Total of 29 people.

There are many things that just don’t make sense and questions and answers can only be helpful.

I agree. At the beginning of this year @Mattie and I were briefly discussing the idea of creating a database of ME/CFS patients who have been tested for CCI/AAI. The database could contain spinal MRI images for each patient, and the answers to a general questionnaire that each patient would fill out. Obviously this is no substitute for a published study, but at least there would be some information for ME/CFS researchers to view.

One of the questions I would like to ask is whether their ME/CFS symptoms had the classic viral onset — ie, being hit with ME/CFS within days (rapid onset) or months (gradual onset) of an acute viral infection, such as a gastrointestinal infection or flu-like illness.

The majority of ME/CFS patients have this classic viral onset, so if we can establish that the CCI/AAI-positive patients experienced viral onset, and also have elevated antibodies, it would suggest they do have regular ME/CFS. Most ME/CFS patients have substantially elevated IgG antibody levels to one or more of the usual ME/CFS viruses.

 

[Mij]

I would be interested to know if the success stories all include ME pts who had POTS.

I know Jeff and Jen had POTS, not sure about Mattie.

 

[JenB]

Dear @JenB
With due respect to Dr Kaufman, I don't see any ethical basis for further surgery on PWME and I would advise strongly against it until we have the background information that would justify it.

This makes no sense. The surgeries are for people who have been diagnosed with craniocervical instability, based on the criteria of surgeons who have been performing these surgeries for a few decades. No one is having these surgeries because they have a diagnosis of ME.

My understanding is that in your case the surgery was considered indicated on grounds of symptoms attributable to CCI, not to ME. You say your ME has gone into remission but my understanding is that this was a surprise.

It was not a total surprise. I suspected it was possible if the surgery was successful, but it was of course not something I could count on. Again, more on this soon.

We have heard suggestions that a high proportion of ME patients getting imaging are being told they have cervical problems. That is complicated by the fact that some of those may not be CCI, but Chiari or stenosis, the latter of which would be expected to have anything to do with brainstem problems. However, if there really is a high rate of CCI in ME then it deserves publishing right now in a high profile journal. All those involved in the imaging should want to do that before any more surgery is contemplated. If the cases imaged so far cannot provide data then a blinded study of a further cohort should be done. Until those images are publicly available to review by experts I would see further surgery on the spine directed at symptoms of ME as unethical and I would be prepared to say that in a legal context.

I am not sure why it is complicated by the fact that it might be Chiari or stenosis. It is pretty straightforward to distinguish between CCI, Chiari and cervical stenosis on the same MRI and in the case of CCI, use a physical exam and/or traction test in addition.

Again, no one is having these surgeries to alleviate their ME symptoms. No surgeon is promising or implying that they will. My surgeon has no idea what ME even is (although I think he is starting to learn). That said, I did have to sign paperwork prior to surgery affirming that I understood that the surgery was not indicated for/expected to have any effect on my systemic symptoms such as POTS or dysautonomia. He also verbally discussed this with me as did other staff. They want to be very clear that this is not the purpose of the surgery.

If cases are to be operated on there should be prospective registration in a trial. To say that surgeons are too busy to take enough interest in their patients' safety to document things properly doesn't say much for the surgeons. They should be absolutely tuned in to PEM and ME symptoms if they are going to operate based on those symptoms.

Again, they are NOT operating on the basis of these symptoms.

I am going to finishing writing out my story just as fast as I possibly can. It will take some time. There are a lot of assumptions on this and other threads that are just not accurate.

 

[Jeff_w]

I would be interested to know if the success stories all include ME pts who had POTS.

I know Jeff and Jen had POTS, not sure about Mattie.

Mattie had POTS. He discusses this in more detail, here: Interview with Mattie.