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

[Jonathan Edwards]

Authored by the U.S. ME/CFS Clinician Coalition, a group of US clinical disease experts who have collectively spent hundreds of years treating many thousands of ME/CFS patients. They have authored primers on clinical management, have served on CDC medical education initiatives, and are actively involved in ME/CFS research.

So one has to ask why the test is so unbalanced.

 

[Jonathan Edwards]

To me that says if someone, who has been diagnosed with ME, is found to have CCI and all their symptoms resolve after surgery, they were misdiagnosed with ME.

I don't think this makes sense @Trish because CCI does not cause symptoms of ME. It causes a different picture. Symptoms of CCI in general DO NOT improve with surgery - they just stop getting worse. So if symptoms improve with spinal surgery we are left without an easy explanation.

Edit:As you then pointed out.

 

[Guest 102]

Responding to my last post. Note that post was trying to clarify the position taken by the group of doctors, not an expression of my personal opinion.

I'm going round and round in circles with this.

Since ME by definition requires diagnosis by symptoms that fit one or other set of criteria, I think we have to accept that someone who has those symptoms by definition has ME.

I also think that someone who recovers from ME symptoms after a treatment such as CCI surgery is a mystery we can't at the moment solve. I don't think it's accurate, or appropriate, without being that individual's doctor, for the rest of us to say about an individual 'that person didn't have ME'.

All we can say is, CCI itself rarely coincides with ME, since most people with CCI don't have ME, and most people with ME don't have CCI.

CCI symptoms are different from ME symptoms, so there is no reason to assume someone who has both ME symptoms and CCI symptoms only has CCI, not ME.

It would seem possible that on rare occasions someone could have both ME and CCI, for example if they had ME triggered by an infection, and at some other time were involved in a physical trauma that damaged the neck, such as a bad whiplash. Or even that they were involved in an accident that caused both damage to the neck leading to CCI, and at the same time triggered ME.

If they then have surgical intervention for the CCI, which resolves the CCI symptoms, but their ME persists, as seems to have happened in some cases, then that shows that CCI surgery is not a cure for ME in their cases.

If they have surgery for CCI, which resolves their CCI symptoms, and at the same time find their ME symptoms go into remission, as has apparently happened in some cases, we are left with an unsolved mystery.

While it remains an unsolved mystery, I don't think any of us should take a firm stance on either side of the fence -
- either promoting CCI as a subgroup cause of ME,
- or saying individuals whose ME went into remission after surgery didn't have ME.

The former is more problematic, because it is misleading people into very expensive surgeries they may not need, and causing confusion in the ME community.

The latter is more a matter of personal choice. I prefer not to comment on whether individuals' diagnoses are accurate. I don't think I should do so, as I'm not their doctor.

Yes, agree, Trish, am sure is possible to have rare incidences of CCI and ME co-existing, as you describe, but that does not warrant the pushing of CCI into subset of ME, as is definitely happening in some quarters. But I also think it is not that easy to get this kind of neurosurgery, surely you would not be deemed suitable on an ME dx alone, you would absolutely need to have confirmation of mechanical abnormalities too? So I can't see a pwME actually going ahead with this surgery, 'being misled', unless they had an incontrovertible additional diagnosis. I can see though ME patients trying to get expensive scans they perhaps don't actually need.

(Slightly as an aside, I also don't know enough to understand why some UK patients are apparently having to crowdfund/go to Spain for this kind of surgery - I imagine these are patients with an EDS dx as well as ME? Why are they not being treated here? Is the surgery controversial? Or is the cost just prohibitive for NHS, weighing up pros and cons? I do not know what the reality is.)

Still, back on topic, I also see little point in even having a process of differential diagnosis if one can later have a dx of CCI, but then still have been correctly dxed with ME, after recovering *fully* via surgery - it would make no sense (that is me more thinking aloud, not written in response to anything you said, Trish). Yes, it does feel like we are going round in circles. I hope science will get us all some answers SOON, before more decades slip away.

 

[Jonathan Edwards]

But I also think it is not that easy to get this kind of neurosurgery, surely you would not be deemed suitable on an ME dx alone, you would absolutely need to have confirmation of mechanical abnormalities too? So I can't see a pwME actually going ahead with this surgery, 'being misled', unless they had an incontrovertible additional diagnosis.

With due respect (meant entirely sincerely) @Nasim Marie Jafry, it seems you have no idea how private surgery works. None of the images I have seen on the internet indicate what I would consider a significant abnormality. The use of standing MRI for the purpose of showing CCI is highly controversial - in the UK being provided by a retired radiologist from Scotland at a private London clinic. The surgery is highly controversial. It is not done in the UK on the NHS because surgeons do not think it is indicated.

I think we have to stand back and consider the implications of educational material being put out by a group of experts that includes at least one physician involved in making referrals for highly controversial treatment.

The sad truth seems to be that PWME have been ill-served by 'experts' talking nonsense on all sides.

 

[Guest 102]

With due respect (meant entirely sincerely) @Nasim Marie Jafry, it seems you have no idea how private surgery works. None of the images I have seen on the internet indicate what I would consider a significant abnormality. The use of standing MRI for the purpose of showing CCI is highly controversial - in the UK being provided by a retired radiologist from Scotland at a private London clinic. The surgery is highly controversial. It is not done in the UK on the NHS because surgeons do not think it is indicated.

I think we have to stand back and consider the implications of educational material being put out by a group of experts that includes at least one physician involved in making referrals for highly controversial treatment.

The sad truth seems to be that PWME have been ill-served by 'experts' talking nonsense on all sides.

Thanks for making that distinction, Jonathan, I was, in my head, thinking only of NHS surgery. But as I asked in my post - is the surgery controversial? - and I was meaning in NHS - and it seems so. And I made it clear in my post I do not know enough about what is going on. I was obviously unaware that UK private clinician(s) were actually making referrals for this treatment - I guess the controversy over the scans/treatment is the reason that UK patients are going to Spain? I thought maybe people were getting private scans here then sending them over to Spain for a second opinon. But it seems referrals for surgery are being given privately from UK too, that NHS would disagree with. What a mess. *Edited for clarity. PS. Yes, I have never had private surgery in UK so I def do not know how it works!

 

[Guest 102]

I don't think this makes sense @Trish because CCI does not cause symptoms of ME. It causes a different picture. Symptoms of CCI in general DO NOT improve with surgery - they just stop getting worse. So if symptoms improve with spinal surgery we are left without an easy explanation.

Edit:As you then pointed out.

But can I ask, Jonathan - why then are CCI and Chiari etc listed under differential diagnosis in both USA and UK clinical guides if the symptoms are not at least similar? Is there no significant overlap? I don't understand.

 

[Jonathan Edwards]

But can I ask, Jonathan - why then are CCI and Chiari etc listed under differential diagnosis in both USA and UK clinical guides if the symptoms are not at least similar? Is there no significant overlap? I don't understand.

A good question. The only thing that I can think of is that some of the 'experts' involved have had a personal interest in highlighting these. Chiari is notorious for being over diagnosed and raised as a hare in people with vague symptoms. Peter Rowe had an interest in cervical stenosis for reasons that I never found very clear.

What matters in this situation is not symptom overlap - there are lots of symptoms that overlap in all sorts of situations. What matters is the total pattern of clinical presentation and I find it very hard to see how a physician taking a careful history would confuse ME/CFS with CCI unless anyone complaining of feeling bad and unsteady was dumped in a chronic fatigue category.

If one looks back over the literature on ME/CFS over the last twenty years there are all sorts of hares like this raised. It is just conceivable that a lazy or poorly trained doctor would confuse the diagnoses but these are no way going to be top of the list because they are rare (except cervical stenosis). I am afraid I have seen an awful lot of guff from 'major experts' in this field.

The other important point is that as soon as an expert speculates that ME/CFS might be linked with or confused with another problem they get referred dozens of cases with the other problem, or seeming like it, confirming their speculation.

 

[rvallee]

Can you explain why? These spinal conditions are listed as different from ME/CFS but may have some overlapping symptoms, and important to differentiate. They are listed in a large table along with all sorts of other unrelated conditions like cancer and asthma.

I take from this table that they are saying that people who are claiming cervical spinal structural problems are causes of ME are wrong. Isn't that a good thing to make that distinction clear?

I think it's reasonable to point out that the similarities are superficial.

Because it's also reasonable to point out that the people who are confused over this disease are precisely confused over superficial similarities.

Sometimes it's necessary to spell things out very, very slowly and with exaggerated emphasis because you are dealing with people so dense they are practically clothed singularities.

So, yes, only people unfamiliar with the disease will be confused by those superficial similarities. Unfortunately the people who are in near complete control of this disease are very unfamiliar with it and this has a cascading effect of many more people becoming confused over superficial similarities that have to be spelled out as if explained to a particularly slow child.

It's a sad necessity but it has to be done.

 

[Saz94]

(Slightly as an aside, I also don't know enough to understand why some UK patients are apparently having to crowdfund/go to Spain for this kind of surgery - I imagine these are patients with an EDS dx as well as ME? Why are they not being treated here? Is the surgery controversial? Or is the cost just prohibitive for NHS, weighing up pros and cons? I do not know what the reality is.).

With due respect (meant entirely sincerely) @Nasim Marie Jafry, it seems you have no idea how private surgery works. None of the images I have seen on the internet indicate what I would consider a significant abnormality. The use of standing MRI for the purpose of showing CCI is highly controversial - in the UK being provided by a retired radiologist from Scotland at a private London clinic. The surgery is highly controversial. It is not done in the UK on the NHS because surgeons do not think it is indicated.

I think we have to stand back and consider the implications of educational material being put out by a group of experts that includes at least one physician involved in making referrals for highly controversial treatment.

The sad truth seems to be that PWME have been ill-served by 'experts' talking nonsense on all sides.

Patients with EDS plus CCI have been going to Spain for surgery for a while (long before this whole thing with people talking about CCI and ME/CFS started).

Look at the story of Melanie Hartshorn for example (you can find by googling).

It's not done in the UK on the NHS because surgeons don't think it is indicated. But the fact is that patients like Melanie (EDS + CCI) are getting the surgery done in Spain, and it is making a huge improvement to their quality of life. Clearly, the logical conclusion is that the NHS are wrong about it. (This shouldnt be surprising, as we know that the NHS tend to be wrong about a lot of things concerning chronic health conditions.)

 

[Jonathan Edwards]

It's not done in the UK on the NHS because surgeons don't think it is indicated. But the fact is that patients like Melanie (EDS + CCI) are getting the surgery done in Spain, and it is making a huge improvement to their quality of life. Clearly, the logical conclusion is that the NHS are wrong about it.

As indicated before, I don't think this is necessarily the logical conclusion. In people with CCI, CCI surgery tends not to produce improvement - it just stops things getting worse. If there is a huge improvement in quality of life one has to ask why. Surgeons at Queen Square are not known for being slow to do operations - unless they have reason to think they will do more harm than good.

 

[Saz94]

I don't think this makes sense @Trish because CCI does not cause symptoms of ME. It causes a different picture. Symptoms of CCI in general DO NOT improve with surgery - they just stop getting worse. So if symptoms improve with spinal surgery we are left without an easy explanation.

Edit:As you then pointed out.

I don't know where you are getting that idea from Jonathan - there are plenty of accounts of people diagnosed with CCI experiencing huge improvements in their health after surgery. Jen Brea, Jeff Wood(s?), Melanie Hartshorn, Karen Scott, Mattie (don't know surname )... and others.

Clearly, CCI surgery produces significant improvements in health for at least some patients who undergo it.

It's not sensible to deny the evidence that is before our eyes. If we deny that CCI surgery can improve some people's health, then how is that any different to the BPS psychiatrists saying "GET can't make ME worse" when they are faced with a tonne of patients who are experiencing worse health as a result of GET?

 

[Saz94]

I feel the need here to quote Karen from another thread:

Ok, so I have read the majority of the comments on this thread some of which I found disconcerting to say the least. I am not a scientist nor do I profess to be. However, like it or not I must tell you my journey.

I got ill following a virus aged 23. My main symptom was PEM. By 36 I’d had a mild Stroke, gone temporarily blind on another occasion and was having Mast Cell issues. At this age I was diagnosed with M.E (by the neurologist involved in the eye issue) upon reading my notes. By my mid forties I was in decline and by 49, rapid decline. I went to see another neurologist (juddering, wheelchair bound, losing control of bodily functions..) who decided I had FND. He accidentally sent me to the Musculoskeletal Dept instead of to physio where my Hypermobility was noted. Aged 50 I was diagnosed with EDS by Dr Alan Hakim (EDS Specialist Rheumatology) who commented on a problem with my neck.

I ended up having the upright MRI at Medserena which noted CCI/AAI (Professor Smith). Dr Hakim felt continuing with supine physio was the only action I could take. However, I had been having physio for 11 months by then and was just getting worse. I sent my report to Dr Gilete in Spain for a second opinion. He was concerned about SAI and wanted a moving Mri to check. At this point can I make it known that Dr G does NOT operate on everyone as seems to be inferred. He has declined a number of people either because surgery was unnecessary or because he didn’t feel they were mentally stable enough at that point in time. I had cineradiology which confirmed SAI and surgery was offered at consultation. My physio also felt that my paralysis might continue without the op. I had my full cervical fusion in May aged 51. I also managed to secure NHS aftercare with a leading London neurosurgeon who commented my flexion and extension was higher than an average person with EDS.

After years of feeling unwell, my PEM has gone (although I’m having to build my strength up after previously spending 18 hrs in bed); I am no longer in as much pain; I am no longer in a wheelchair; I am no longer constantly nauseous or dizzy; I’ve not vomited which was a regular occurrence. I’ve not even had so much as a headache! In fact, the only issue I’ve had is with one shoulder which keeps partially slipping from the joint. Today, I walked to and from the doctors. A return trip of 4 miles. 4 miles for a woman who’d barely been able to make more than a few steps without huge repercussions!!

As I said, I am no scientist and PEM is well known in the EDS population as well as in that of the M.E population. What I do know is that I (and a number of other people) have their lives back. Poo-poo it all you like, but this is MY reality.

 

[Jonathan Edwards]

I don't know where you are getting that idea from Jonathan - there are plenty of accounts of people diagnosed with CCI experiencing huge improvements in their health after surgery. Jen Brea, Jeff Wood(s?), Melanie Hartshorn, Karen Scott, Mattie (don't know surname )... and others.

I was talking about people with CCI, not people 'diagnosed with CCI'. The evidence before my eyes in terms of the scans put up on the internet do not as far as I can see show CCI.

It is very different from the BPS people saying GET cannot make you worse. I am saying we do not have evidence of people with reliable evidence of CCI getting a lot better. We have anecdotes from patients attending surgeons, including one who I believe has been sued for doing unnecessary operations. The BPS people are promoting an unproven treatment. I am doing the opposite.

 

[Jonathan Edwards]

I feel the need here to quote Karen from another thread:

I think that illustrates how hard it is to know what is really going on here.

 

[Saz94]

I was talking about people with CCI, not people 'diagnosed with CCI'. The evidence before my eyes in terms of the scans put up on the internet do not as far as I can see show CCI.

It is very different from the BPS people saying GET cannot make you worse. I am saying we do not have evidence of people with reliable evidence of CCI getting a lot better. We have anecdotes from patients attending surgeons, including one who I believe has been sued for doing unnecessary operations. The BPS people are promoting an unproven treatment. I am doing the opposite.

OK... but these people who are diagnosed with CCI, and have improved health after CCI surgery... is it not the logical conclusion that they were probably correctly diagnosed with CCI? OK so they don't meet what you consider to be the standard for CCI - so let's say maybe they have "XYZ" instead. Then, the fact is that patients who have "XYZ" and undergo CCI surgery, can get big improvements in their health.

 

[Jonathan Edwards]

OK... but these people who are diagnosed with CCI, and have improved health after CCI surgery... is it not the logical conclusion that they were probably correctly diagnosed with CCI?

We have discussed this at length before and you may not have seen it so I will repeat.
People with documented CCI in general do not have improved health after CCI surgery. The surgery is done to prevent further permanent damage to the brainstem or cord. Some may stop having episodes of loss of consciousness or hand pain but a general improvement in health is not expected. So it is not a logical conclusion.

Then, the fact is that patients who have "XYZ" and undergo CCI surgery, can get big improvements in their health.

Indeed, so the question is why they got better if CCI was not in fact the cause of symptoms. The simplest answer is. placebo effect but there may be much more subtle reasons. One thing that occurred to me is that CCI surgery may block interoceptive signals from the neck and semicircular canals associated with neck movement. CCI surgery might help someone with hypersensitive vestibular apparatus for instance - although I doubt that particular case.

Things are a lot more complicated than it may seem on the surface.

 

[Amw66]

https://solvecfs.org/wp-content/uploads/2019/09/Diagnosing-and-Treating-MECFS-_V1-Final.pdf

Yes, but if you cannot access testing for differential diagnoses?
Here we have standard blood panels, very limited thyroid function testing and not a lot else. Medics with no knowledge and many with no interest in learning.

Medics are being directed to MUS pathways.
I would love my daughter to have something else; chances of referrals .......

 

[Mithriel]

Chronic Fatigue Syndrome is a such a vague diagnosis that it can cover many things since fatigue is such a common symptom but ME is a specific diagnosis. It is only when it is used as a synonym of CFS that there is confusion. The effects of exertion we experience are not seen in any other disease. ME is a disease of energy metabolism.

The Workwell institute work has shown that our aerobic system does not work properly and we rely heavily on anaerobic respiration for our energy. This is a useful explanation for our symptoms and matches what people with ME have claimed to experience for years.

What I cannot see is why fixing a mechanical problem could relieve the post exertional problems we experience. If it is the sole cause of someone's symptoms then where is the energy problem of ME? If someone has true PEM then this must remain after the operation so they could still end up bedridden. In fact the relief of some symptoms could lead someone to do too much and we have seen how many people end up worse than they started when an improvement means they do too much.

Moderator note:
This post has been copied and some posts have been moved to this thread:
Diagnosis of ME and the use of the labels ME and CFS.

 

[Guest 102]

I think we can all agree it's a hot mess.

The main thing, obviously, is to be well, and brilliant for those who have fully or even partially recovered. And we can see that patients like Karen and Jen and Jeff have recovered - in remarkable ways after surgery. There is no debate there.

But until we have rigorous research, the debates are going to be endless and recursive about who has recovered from what.

Patients like myself - with a robust RamsayME diagnosis (as robust as you could get then, from a specialist neurologist) in 1983/4 - have no idea how a classic postviral ME - lasting decades for many of us - can be banished almost overnight by neurosurgery. And I am certainly not alone in being confused.

Doctors like Jonathan with vast experience are wondering how/why CCI is being diagnosed in pwME - I hope I am correct in saying this? And how surgery for CCI is then leading to an improvement in their 'CCI' and ME, when in fact CCI does not improve with surgery, but only stops worsening?

It really is a mess.

When will it all be clear? it really is exhausting, waiting for clear answers, navigating all this uncertainty. Meanwhile our lives slip by, horribly diminished by ME.

 

[Guest 102]

Chronic Fatigue Syndrome is a such a vague diagnosis that it can cover many things since fatigue is such a common symptom but ME is a specific diagnosis. It is only when it is used as a synonym of CFS that there is confusion. The effects of exertion we experience are not seen in any other disease. ME is a disease of energy metabolism.

The Workwell institute work has shown that our aerobic system does not work properly and we rely heavily on anaerobic respiration for our energy. This is a useful explanation for our symptoms and matches what people with ME have claimed to experience for years.

What I cannot see is why fixing a mechanical problem could relieve the post exertional problems we experience. If it is the sole cause of someone's symptoms then where is the energy problem of ME? If someone has true PEM then this must remain after the operation so they could still end up bedridden. In fact the relief of some symptoms could lead someone to do too much and we have seen how many people end up worse than they started when an improvement means they do too much.

Yes, I was also confused when Jen said she knew her PEM had gone the minute she woke up from surgery. But how can you know, when PEM is defined as post-exertional, you would need to wait at least a few days, weeks to know there was no classic ME fatigability/PEM, surely? Although, it would be wonderful to wake up any morning with no PEM, instead of feeling pummelled all over as I do. And I would immediately notice its absence. But I certainly would not be confident it had gone for good until some days/weeks/months had passed. How could any of us?