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

Diagnostic categories may have changed but the clinical problem has not changed.

The new criteria look as arbitrary and 'stretchable' as the old.

 

main thing, that they are not plain dumb lying at us and hide important details.

 

very much so

 

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?

 

This

 

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.

 

Interesting. But presumably only wise to do under medical advice / supervision.

 

Agreed. Those products aren't anything I'd want to mess around with...

 

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.

 

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.

 

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 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.

 

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

 

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:

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.

 

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.

 

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

This means a lot. Thank you ❤️