Discussion in 'General ME/CFS News' started by Hubris, May 15, 2019.
I doubt its a big percentage, but it would not surprise me if 1-3 percent are misdiagnosed with neck/spine-issues
It's a blog by someone called Paolo Maccallini. Here's the first bit:
This is followed by diagrams and calculations related to cranio-cervical instability and surgery.
Unless someone can point us to some research and tell us what this guy's qualifications are to post this information, I remain unconvinced that it has any relevance to ME.
Sure, some people may turn out to have both ME and CCI, but, as we've discussed on other threads, this doesn't prove anything about ME.
Haven’t read the blog post but surely it’s more about CCI/Chiari expressing similar or overlapping symptoms to ME, which given the lack of investigation or willingness to exclude other diagnoses for most doctors seeing ME patients, is a problem.
The symptom list here would probably get a diagnosis of ME/CFS if the investigation wasn’t done: https://me-pedia.org/wiki/Craniocervical_instability#Symptoms
It's a follow on from Jeff's perseverance documented on PR who identified this as being a major contribution to his severe ME, and who has since surgery, recovered a large degree of function.
There are now growing numbers who are exploring this, some have discovered that this applies to them, have had surgery and recovered function. It may only apply to a small number, but it is something that , if symptomatic, should be checked out.
Neck/ Head area was also highlighted by Rowe as some patients had stenosis.
he's a member
I am not totally convinced one can have CCI and ME. Have already pointed out before that Chiari - another structural abnormality in brainstem - would exclude a diagnosis of ME according to MEA clinical guidelines. My own thoughts are that CCI - which is v uncommon - is mimicking ME and being misdiagnosed by well-meaning doctors as ME. If one has the surgery and recovers from all previous symptoms, I think one was most likely misdiagnosed. I am just very wary of connections being made. I think would be good to get Dr Abhijit Chaudhuri's opinion, who co-authors ME Assoc guidelines - he is consultant neurologist with specialist ME knowledge, came after Prof Behan in Glasgow in 90s.
I think the point that has been made in previous discussions on this topic here is that, as I understand it, to be diagnosed with chiari malformation and/or cranio-cervical instability and/or Atlanto-axial instability requires some neurological signs which most pwME don't have.
That MEpedia article seems OK up to a point, it does list the types of conditions that might lead to these problems and says the claims of a connection with ME are anecdotal - but then it lists lots of non-specific symptoms that could be present in dozens of different diseases, including ME, without emphasising that neurological signs are necessary for diagnosis. That could mean lots of people with ME could end up worrying unnecessarily.
We have discussed this before. A doctor would have to be seriously incompetent to confuse CCI problems with ME. There is really no similarity. That does not mean that there aren't surgeons out there who are prepared to take advantage of people. The stuff in the blog cited makes no medical sense.
The continued discussion of CCI worries me. What always worries me most is that parents of young people will take this seriously with potentially disastrous consequences for their children.
Am afraid I think MEpedia has a tendency to sometimes over-egg anecdotal connections - I also think there is a tendency for J Brea's own experiences - which are not always representative of many pwME - to be unconsciously amplified - I know this is not intentional, but I have had to ask for edits before - my stupid brain prevents me from remembering exactly what it was now, but there was something I was uncomfortable with last year - I think to do with EDS or MCAS connection but can't honestly recall. And I know I bang on about RamsayME, sorry! But that is the illness I have - and I think if ME was structural in any way at all, Ramsay would have clocked on. As Trish says, pwME can be alarmed if over zealous connections are made.
Re: the entry on ME-pedia, for those of you interested in knowing a bit more of Jen Brea's perspective, the following is from a Twitter convo she had with VanElzakker.
"Just came across this by accident. Given the experience I've just had with CCI and tethered cord, I worry a bit about this frame. It turns ME/CFS back into a diagnosis of exclusion."
"We know that many mechanisms can probably cause identical or near-identical downstream outcomes. That is likely true of MANY diagnostic ccategories. Somehow, though, when we figure out the mechanism, we call it a misdiagnosis."
"I don't think those causes "mimick" the symptoms of ME/CFS. I think they cause the symptoms of ME/CFS. For everyone there is, self-evidently, a cause or central mechanism, whether or not it is known."
"I think the part I'm objecting to is the mimicking piece and the "realized it was something else" piece. I think the latter is true in some cases, but not if you meet the criteria we've constructed since at least at present, this is a disease defined by a set of symptoms."
Full thread and context here:
CCI does not mimic ME/CFS nor does it cause the symptoms of ME/CFS. I looked after several people with CCI in the past and none of them had anything remotely resembling ME/CFS. Nor is there any indication in the textbooks nor reason to think that they might.
Jonathan - if it's not too time consuming (and if you haven't posted something to this effect already that you could direct me towards instead) could you set out what you consider the major differences between CCI and ME/CFS to be?
(I don't really know what to make of this whole debate, but having been told recently by a neurologist that there are serious issues in my cervical spine that will probably require an operation I've come to the realisation that I need to understand it a bit better than I currently do...)
My understanding is that ME makes people feel generally unwell. CCI does not.
ME includes PEM, CCI does not
ME includes unrefreshing sleep, brain fog and sensitivity to noise and light. CCI does not.
I cannot actually think of an ME symptoms that CCI produces.
CCI produces loss of sensation and weakness and stiffness in specific parts of the body - particularly limbs. The pattern varies according to the anatomy of the case. Neurological signs are of cord damage with increased reflexes and sensory loss. ME produces none of these.
My understanding is that Jenn explored a CCI diagnosis after reading of Jeff’s experience. Both had ME diagnoses, and both experienced new frightening symptoms after thyroid/dental surgery respectively. Jeff recovered from all his symptoms after fusion surgery, and frames his severe ME as caused by CCI. (He even suggested to me I might have CCI, which is frankly ridiculous as I don’t have those symptoms, esp the alarming not being able to breathe when sleeping cos of neck position.)
I am not honestly sure if Jenn thinks CCI caused her ME or if she thinks she has two separate conditions, though she has written about it in detail on MEDIUM. But she seems to be doing well after her surgery, which is of course v good news.
But if you have fusion surgery and ALL your symptoms are resolved, as in Jeff’s widely discussed case, I don’t think it is rocket science to at least consider you were misdiagnosed. Are there any recognised ME researchers/doctors out there actually saying CCI causes ME? Or are patients just determining this to be the case?
ppl "claim" to not function as required by daily life.
lots of efforts, but nothing (much) is found.... ttttzzz....
further, their appearance may look quite ok.
after a while this causes "psychological pressure" or "emotional pressure" (distress?).
perhaps from the environment, but sure enough it originates in oneself.
having a exotic, expensive SPINE SURGERY is surely a dramatic thing.
Thank you - this is a helpful summary and just what I was hoping for.
There are researchers out there investigating the damage/disruption to the brainstem that seems to occur with ME - there was a presentation on the evidence for this at the recent Emerge conference. My understanding is that Jen and Jeff are suggesting CCI is just one potential cause of damage/disruption to the brainstem - which could then result in (or contribute to) ME symptoms for a subset of patients.
I probably should leave this for @Jonathan Edwards to answer, but my understanding is the brainstem issues being researched for ME are to do with the biochemical functions of the cells within the brainstem.
The CCI type of issues that are caused by things like whiplash leading to damage to ligaments leading to too much movement between skull and neck bones that then causes direct physical pressure on the brainstem, leading to messages being blocked, so the symptoms are neurological things like paralysis of specific muscles, or numbness. Those are not ME symptoms.
Edit: This is the talk at the Emerge conference about brainstem research. It is about different levels of nerve cell myelination seen on MRI scans in ME patients brain stem and other areas of the brain compared to healthy controls. Nothing to do with bony pressure on the brainstem.
I think it is actually quite difficult to know what to make of all symptoms resolving with cervical spine surgery. In general, surgery for CCI is designed to stop things getting worse. Existing neurological symptoms do not necessarily change much. The problem is damage to the spinal cord long tracts, which have very limited parity for repair. If all symptoms resolved it would be quite hard to know what they had been due to.
I very much doubt that any academic clinicians are suggesting that CCI causes ME. However, I think the current interest may have been sparked by Peter Rowe mentioning a case (or small series) that improved with surgery. I am not sure that they were diagnosed with ME/CFS though.
I was not aware of anyone researching damage or disruption to brainstem specifically in ME. People have been talking about things like PET scan changes in mid brain and perhaps brain stem but in relation to functions associated with the higher levels (cognition, maybe implication of limbic system and insula). CCI only affects the bottom end - the medulla - which is involved in carrying messages up and down from the limbs and in bulbar functions like speech production. People with CCI may develop odd sounding speech but they do not have any difficulty in finding words or trying to speak. It would just sound odd.
So I don't actually think CCI is relevant at all to the sorts of things people have been discussing about ME brains. I may have missed something but I rather doubt it. What I have seen on social media relating to CCI and ME seems completely garbled.
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