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

As this thread progresses, but by no means this thread in isolation, it really makes me believe that researching into ME should, to serious scientists, be a truly exciting and highly worthwhile challenge. The BPS'ites have made their crass attempts to suggest scientists are being scared off of ME research (maybe even hoping to actually scare off physiological researchers), but have our advocacy efforts ever tried to increase awareness to up-and-coming scientists, of how professionally rewarding a field of research it just might prove to be?
 
Graham said:
Returning to my comment about the number of patients in our ME support group – I was thinking about this on my slow amble with an elderly dog around the block, and realized that I should have been more mathematically explicit.

Members of our support group do not represent the ME community. Those who are mildly affected (and that's a pretty foul way to describe people who are very ill and struggling to survive) will be doing everything they can to earn a living, so are unlikely to become members. Those who are severely affected are unable to attend meetings, even if it is "only" for a coffee, so again are unlikely to want to become members. I'd be surprised if we represented even a half the ME community. So if 1/500 have a diagnosis of ME, we probably at best only represent 1/1000 at best.

With only 30 members in the group, and with only 3 with EDS, the figure of 10% is very nebulous: we can't extrapolate from that. The numbers can draw attention to a possible problem, but cannot sensibly be used in a calculation.

The prevalence of either ME or EDS rely upon the diagnosis of these conditions from a small number of specialists, and a handful of studies. The reliability of these figures is very poor, particularly with no agreed set of criteria or diagnostic test. (Diagnostic tests have to be interpreted and are much less reliable than the public would like to believe, but with ME we have nothing at all.)

If I were to use the appropriate variety of values for each of these, the results would be wildly different.

But the biggest problem by far would be caused if the numbers of people with EDS were underestimated and the number with ME were overestimated because, like the three members of my group, their first diagnosis was ME rather than EDS, and this simply meant that no further options were considered. This would not have a dramatic effect on the prevalence of ME (which I think is very unreliable anyway), but it would have a significant effect on the estimate of numbers with EDS.

Is it possible that having EDS could result in someone being misdiagnosed with ME? Probably not if they were first sent to someone specializing in EDS, but if they were sent to an ME centre, I have much less confidence that it would be spotted. (Remember that there are areas of the country not covered by such centres, that a proportion of such centres do not have a specialist, and that those that do have specialists have them often from a psychological background). In addition, people with EDS but not yet experiencing problems are just as likely as anyone else (or more likely?) to go down with ME and have that diagnosed first.

Although we can speculate about whether EDS and ME have some form of link, or whether ME could cause similar problems in the neck, it seems to me that the big issue to be addressed is the probability of misdiagnosis.

My friend's GP put in a request for her to see one of the EDS specialists: the funding authority refused it. If access to such specialists is limited, again, how reliable are reports of prevalence and of misdiagnosis?

She did see him privately. He saw the Medserena scan (again that had to be done privately) and commented that the flexion and extension was one of the highest he had seen in EDS.

I wonder why those of us with ME have such mistrust of the system?
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This
 
Barry said:
How could one ever go about trying to gather good evidence on something like this, beyond the current very limited anecdotal indications?
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It would be interesting to conduct a simple study examining whether ME/CFS patients when placed under neck traction experience instant remission from POTS. This I believe occurred with Jen and Jeff.

Traction is an easy thing to do: you can even buy over-door neck traction devices on Amazon for around £15.
 
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Hip said:
It would be interesting to conduct a simple study examining whether ME/CFS patients when placed under neck traction experience instant remission from POTS. This I believe occurred with Jen and Jeff.

Traction is an easy thing to do: you can even buy over-door neck traction devices on Amazon for around £15.
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Interesting. But presumably only wise to do under medical advice / supervision.
 
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Hip said:
It would be interesting to conduct a simple study examining whether ME/CFS patients when placed under neck traction experience instant remission from POTS. This I believe occurred with Jen and Jeff.

Traction is an easy thing to do: you can even buy over-door neck traction devices on Amazon for around £15.
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This seems a bit extreme just because a very small minority of ME patients (< 20 patients out of millions have had symptoms disappear via traction/surgery -- what would the percentages be here?) Here is a warning that perhaps @Hip does not realize but treatment with neck traction is contraindicated with the following conditions unless you are under medical supervision cause it can cause much more serious issues.

  • Arthritis
  • Hardware left over from surgery (for example, pins in your spine)
  • Recent neck or spine injury
  • A tumor in the vicinity of your neck
  • An infection of the bone or other infection in the neck
  • Vertebrae issues
  • Carotid arteries
  • Osteoporosis
  • Cervical instability
  • Spinal hypermobility
Wouldn't it be more prudent to actually get a diagnosis prior to trying what could be something that is harmful. I find this kind of medical advice to try an over the door traction device extremely alarming.

I got in a car accident back in 2002 and did have a neck injury that required traction and it provided no relief for any of my ME symptoms whatsoever. Now I have post car injury pain + ME.
 
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Barry said:
As this thread progresses, but by no means this thread in isolation, it really makes me believe that researching into ME should, to serious scientists, be a truly exciting and highly worthwhile challenge. The BPS'ites have made their crass attempts to suggest scientists are being scared off of ME research (maybe even hoping to actually scare off physiological researchers), but have our advocacy efforts ever tried to increase awareness to up-and-coming scientists, of how professionally rewarding a field of research it just might prove to be?
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I feel the same way (as a patient, but also as a young-ish person, interested in science, trying to wrap my head around it all). I assume the issue is that for up-and-comers it's just not a secure career path - it seems like you'd have better luck guaranteeing acquisition of square meals and reasonable housing by going to a well-funded cancer research institute or university lab. Maybe the trick is to get more 'eminent' types interested - they can use their name and station to raise interest and investments, and provide a secure job space for the ambitious young researchers. (Not that I know much about how this all works.)
 
It is worth remembering that we exist in a somewhat parallel universe.

The most iniquitous manifestation of the BPS worldview can be seen in @Binkie4 and @Graham ' s posts. The complexities of ME are not understood in a medical system which at best simplifies the condition and at worst denies it exists as a " real" condition.

We have little knowledge precisely because in numerous instances there is no background knowledge, no curiousity, no interest. Once you have this label you are not referred onwards as everything is " ME". It can be a huge dustbin. As @Graham explains, if the first diagnosis is CFS, then not much " looking" happens afterwards.

There are not always specialist centres, nor clinicians with much knowledge, nor it seems the willingness to learn.

In some ways no specialists can be a positive given the recent historical context, but understanding symptoms and comorbidities is key to retaining and improving function , particularly in such a heterogeneous illness population.

Diagnosis can be simply due to not fitting into other " boxes" the variety of which may depend on your gp' s experience, viewpoint, and your previous history. I could easily believe the 40% misdiagnosis rate.

We have a gp who will refer, we just have a system with no place for us

A myriad of symptoms which include worsening neck pain , sensitivity swallowing thin liquids and dizziness draw blank expressions. The art of listening seems to have been lost.

The takeaway from every appointment is that noone listens or seems to believe her.
 
Kelly M. said:
This seems a bit extreme just because a very small minority of ME patients (< 20 patients out of millions have had symptoms disappear via traction/surgery -- what would the percentages be here?)
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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.
 
Kelly M. said:
I find this kind of medical advice to try an over the door traction device extremely alarming.
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I am not suggesting any ME/CFS patient should try an over-the-door traction device. What I am suggesting is that a study could be conducted which uses an MRI to detect CCI/AAI and any other spinal conditions, and then where appropriate applies neck traction to see if certain symptoms such as POTS disappear under traction.
 
Sarah94 said:
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Jonathan, hEDS is not simply hypermobility plus pain and fatigue.

The NHS Choices website page on EDS says:
"People with hEDS may have:
I know people who have a diagnosis of hEDS. Their pain is very definitely related to their hypermobility - their joints are repeatedly coming out of place and causing them great pain.
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I agree, I have HEDS ME and chronic migraines. My ME specialist noticed my joints and asked my GP to refer me to rheumatologist. She was shocked at how hypermobile I was. Only my neck wasn’t hypermobile. I have all symptoms above except mitral vale prolapse. There’s just one more thing that’s not there that in list to diagnose though, sublaxes and dislocations which I also have.

I don’t think EDS and ME are linked, but if you have diagnoses of both, in my case migraines as well, they can feed into either making the ME symptoms worse.

EDIT: also you have increased risk of gastroparesis due to all types of EDS, including HEDS
 
Most posts relating to a traction device have been reinstated after a temporary deletion for moderation consideration.

S4ME does not support experimentation with traction devices outside formal supervised trials. Any reports of 'at-home' experimentation with traction devices will be removed under the 'no medical advice' rule.
 
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I’m not wanting to start a series of n=1 anecdotes, just expressing my profound hope about also caution for the people who have already undergone these procedures and who believe them to have brought about a cure or remission.

When I had surgery (properly diagnosed parathyroid-), I felt all the usual recovery difficulties but was almost euphoric with how much better the ME/CFS symptoms were. I would have said it was a huge success for most of a year afterward. But my husband tells me that I was optimistically dismissing (as temporary, due to something else, depression, post-op, normal virus, etc etc) the warning signs of my continuing illness for most of that year. Since then it has even been suggested to me that the anaesthetic might have caused my illness. (I tend to be somewhat relapsing remitting with sufficient rest).
My point is that any surgery involves a lot of treatments and procedures that might help in some way, or else recovery from surgery tends to mask our condition when the illness is in a ‘mild’ phase, or something else. Until we’re a year or two out, I have learned (too many times) to enjoy the joy (of something seeming curative) with caution.
If this doesn’t work out in the long run, I want these people (especially Jen as we’ve seen so much of our own experiences through her publicising hers) to know that they are still and will always be welcome here, whatever the outcome - with joy if all proves well, and profound understanding if less fortunate.

I hope this lead turns out to improve our understanding of the factors involved or lines of enquiry for proper studies to pursue. It’s early days.
 
I also find it really interesting that both Jen and also Jeff (unless I remember wrong) experienced an instant remission of POTS symptoms following surgery. A significant subset of ME/CFS patients experience POTS and the fact that POTS resolved immediately makes me think it might be the key aspect in these two reported cases at least. There could be several hypotheses for why the ME/CFS later on resolved on and when time period gets extended, it always increases the likelihood of (any) other factors being at play in the recovery. But in the case of the immediate POTS remission, those factors are at least narrowed down. Quoting from the web site that Jeff put up:
For the past four years, ever since the onset of my severe ME and POTS, my standing heart rate was usually in the 130’s or higher. But, with maximum halo lift, this suddenly didn’t seem to be the case. I felt so different—I suddenly felt… kind of healthy? I grabbed my pulse ox and measured. Sure enough, my standing heart rate was 86! I couldn’t believe it. This seemed too good to be true, and I couldn’t accept this so easily. I had to verify this was actually happening. So I let go of the halo, and my skull sank downward. My heart rate measured 127. I lifted the halo again with maximal traction, and my heart rate was now 82.
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It almost makes the problem seem trivial to me, i.e. that POTS in some cases would "simply" be a result from constant brainstem compression and that it would instantly resolve with removal of this compression. I don't recommend anyone to experiment with neck traction themselves obviously, but traction when medically deemed appropriate is obviously order of magnitude safer than a CCI surgery, which it seems ME/CFS patients are now queuing for.
 
Snow Leopard said:
The problem of course is that ME (*non-Ramsay) and CFS definitions are non-specific and primarily exclusionary. If diagnoses are missed/overlooked, then misdiagnosis is not uncommon.
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Just to clarify, you are saying the Ramsay definition (which both Jeff and I also met) doesn’t have this problem?

Re: breathing my surgeon described it as a sort of “partial Ondine’s syndrome” that he has only seen once before in his entire career. I will include this in future writing but it is hardly typical of CCI.
 
JES said:
I also find it really interesting that both Jen and also Jeff (unless I remember wrong) experienced an instant remission of POTS symptoms following surgery. A significant subset of ME/CFS patients experience POTS and the fact that POTS resolved immediately makes me think it might be the key aspect in these two reported cases at least. There could be several hypotheses for why the ME/CFS later on resolved on and when time period gets extended, it always increases the likelihood of (any) other factors being at play in the recovery. But in the case of the immediate POTS remission, those factors are at least narrowed down.
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As I have written elsewhere, all my symptoms resolved at the same time. I will write about all this clearly and in great detail in subsequent Medium posts.
 
This me
Subtropical Island said:
I’m not wanting to start a series of n=1 anecdotes, just expressing my profound hope about also caution for the people who have already undergone these procedures and who believe them to have brought about a cure or remission.

When I had surgery (properly diagnosed parathyroid-), I felt all the usual recovery difficulties but was almost euphoric with how much better the ME/CFS symptoms were. I would have said it was a huge success for most of a year afterward. But my husband tells me that I was optimistically dismissing (as temporary, due to something else, depression, post-op, normal virus, etc etc) the warning signs of my continuing illness for most of that year. Since then it has even been suggested to me that the anaesthetic might have caused my illness. (I tend to be somewhat relapsing remitting with sufficient rest).
My point is that any surgery involves a lot of treatments and procedures that might help in some way, or else recovery from surgery tends to mask our condition when the illness is in a ‘mild’ phase, or something else. Until we’re a year or two out, I have learned (too many times) to enjoy the joy (of something seeming curative) with caution.
If this doesn’t work out in the long run, I want these people (especially Jen as we’ve seen so much of our own experiences through her publicising hers) to know that they are still and will always be welcome here, whatever the outcome - with joy if all proves well, and profound understanding if less fortunate.

I hope this lead turns out to improve our understanding of the factors involved or lines of enquiry for proper studies to pursue. It’s early days.
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This means a lot. Thank you ❤️
 
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