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

Yeah, as far as I know all the results we have seen from the research of Davis' group has been pilot studies based on no pre-existing work or hypotheses. Davis has explained this problematic, which boils down to the fact that the disease mechanism in ME/CFS is not understood, which is why they have to start from the ground up. This is one reason he didn't receive grants from NIH, but OMF was willing to step in. In order to determine if there is a connection between CCI and ME/CFS, perhaps this is a good starting point.
 
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Trish said:
It could be looked at the other way around. If a scientist sees claims about something that doesn't make sense to them, they may want to put it to the test to see whether the claims hold up - not in order to validate but with an open mind.
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This is why I would like him to explain the reasoning behind his request for pre/post blood testing.

As Ron himself has said - if you have a hypothesis, you need to think of every way you can to test it to destruction. Only when it stands up to every test you can think of to try to invalidate it, you start to think there may be something in it.
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So why is he not testing to “destruction” other anecdotes provided by patients as to what has put theminto remission? Why CCI all of a sudden and nothing else? This could be hugely destructive and embarrassing.
 
Kelly M. said:
So why is he not testing to “destruction” other anecdotes provided by patients as to what has put theminto remission? Why CCI all of a sudden and nothing else? This could be hugely destructive and embarrassing.
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I have no more idea than you on that question. I was not defending Ron's apparent suggestion. I know nothing about it or why he might think it's a good idea.

I was just trying to imagine why a researcher would pick up a hypothesis being put forward by a few members of a patient community and decide to do a bit of research on it.
 
One topic that seems to be doing the rounds is the idea that because the symptoms are now potentially explained by CCI that people with this illness never had "real ME". I think this is a distortion of what most people were saying and it is damaging to perpetuate these accusations. Those patients, at least the ones in our community did have a similar pattern of symptoms an patient experience as other ME patients. Try to interpret discussion in good faith - it would be a mistake to let this discussion divide the community and accusing people of claiming that Jen did not have "real ME" or whatever is just going to perpetuate this division.

ICC ME and CFS criteria are inherently non-specific and it is quite likely that not all patients have the same underlying conditions. But these criteria also exclude patients once their symptoms are likely to be explained by another illness, even when the underling symptom patterns and patient experience is the same. So saying it is "not ME" is only a technicality, it doesn't mean that those patients don't experience a similar illness with overlapping pathology.

Having caution about whether CCI or related illnesses is the cause of ME for other patients should not be interpreted as saying that patients with those illnesses are not welcome in our community. We cannot let minor technicalities be misinterpreted to the point of dividing our community.
 
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There are quite a few anecdotal accounts of death from stroke after chiropractic manipulation of the neck.

Anyone who has ever been to an osteopath or chiropractor may have experienced them apply these swift sudden moves to "crack" joints. It's when they "crack" the neck joints that this issue arises.
 
At the heart of the issue about whether or not therapist-delivered treatments should be recommended by bodies like NICE for ME/CFS is the anomaly that these treatments do not require the safety assessments that drugs need for licensing.

A lot of people talk about the dangers of drugs, and not unreasonably. But so often I hear people say that it is fair enough to try 'therapy' first because it is natural and unlikely to do harm. There is nothing natural about chiropractic techniques as far as I can see. Or CBT for that matter. And harm from physical therapies can be devastating.
 
Jonathan Edwards said:
There is nothing natural about chiropractic techniques as far as I can see.
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I had treatment from a Chiropracter for low back problem (spondylolisthesis L5/S1) about 2 years into having ME. I was reduced to scuttling around bent over at about 90 degrees to walk at all. He was recommended by one of my daughters' friend's Dad who had been to him. I emphasise that I really think personal recommendation is important for Chiropractic.

Got me walking upright (or almost upright!) over several sessions. He never said he could help with ME, and I wasn't expecting him to. I wish he was still practising! This is over 25 years ago now, and he wasn't a spring chicken back then. I'm bowing over again now, but I guess at 70 it might be expected.:(

Before that I got sent to NHS physio who was totally useless. Took 2 years of constant back pain to be sent to NHS consultant who was fairly rude and unpleasant and offered me surgery rather obviously expecting me to turn it down.

So while I agree with you @Jonathan Edwards that Chiropractic isn't a "natural" treatment, please don't dismiss it given some caveats.

Sorry, gone a bit off topic here maybe.
 
It would be difficult to prove in court if someone were to sue.

The Lancet

Recently, we have noticed an increase in such patients, not only among elderly but also among middle aged women. For 4 months from July, 1996, we took careful histories from outpatients who complained of symptoms that might have originated from disorders of brainstem or cerebellum. Those suspected, from this history, of being cases of beauty parlour stroke syndrome had their equilibrium function tested, including a vestibulare function test and testing for nystagmus with or without Frenzel glasses3–5 and magnetic resonance angiography with slices set to 30° of the orbit-meatal line, avoiding the eyeballs, the slices being almost vertical to the vertebral arteries at the atlanto-occipital junction.

Among 500 patients we identified 30 with brainstem and/or cerebellar symptoms without any apparent cause other than a shampoo in a beauty parlour. 12 patients were definitely diagnosed as having the syndrome because symptom onset was within a day of the shampoo (table). Patients were mainly middle-aged women and dizziness was the major symptom. All cases showed nystagmus. The symptoms had usually been thought to be due to unconfirmed causes, such as neurosis, psychogenic headache, and the menopause because imaging studies had not revealed a specific cause. However, abnormalities that could account for such symptoms were identified by equilibrium function testing and in patients with severe symptoms, magnetic resonance angiography revealed a blood flow defect of the right vertebral artery at the atlanto-occipital junction in two patients and narrowing of the right vertebral artery in one. All patients except one recovered within 8 months (35 days to 8 months, median 4 months).
 
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