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

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

 

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.

 

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.

 

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!

 

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.

 

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.

 

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.)

 

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.

 

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?

 

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

 

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.

 

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

 

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.

 

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.

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.

 

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 .......

 

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.

 

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.

 

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?