Jonathan Edwards
Senior Member (Voting Rights)
Give them all standing MRIs. Then, in a blinded assessment, see if anyone can find any differences.
You could add in to that the (blinded) MRIs of all the people who have had surgery so far.
Give them all standing MRIs. Then, in a blinded assessment, see if anyone can find any differences.
Would people not be able to feel whether or not they were experiencing traction??Surgical trials can be blinded using sham procedures. That has practical difficulties and major ethical difficulties but it has been done in the past in some situations.
But I am not sure that a trial of surgery is needed. If the surgical immobilisation goes ahead on the basis of there being a relief of symptoms with traction, which I understand is the routine here, then the obvious ting to do is a blinded trial of traction and sham traction - which could include dose response features with partial traction. There are devices that ensure traction 24/7 for extended periods I believe.
Before there is any talk of a trial the clinical and radiological evidence of CCI should be made public in a publication. In fact that evidence should have been public long ago and there should have been a trial of prolonged traction, not surgery.
If an ethical review board (IRB) had ever been involved in this we should have the relevant information now. It looks as if it never was. Why not?
A worrying question is why other neurosurgeons have not called this out. I fear the answer is because neurosurgeons operate without good reasons all the time. I have had one neurosurgical operation that in hindsight I realise I should never have had. Recently I was offered another one but I concluded that there was no good justification for that either. And this was in area of routine surgery of the sort done by the tens of thousands.
But if it is only a small subset of ME-diagnosed people who have these abnormalities on MRI, then you'd need a rather large sample of PWME in order to be sure to catch them.Another sort of trial might be to have three groups- 1. healthy controls, 2. people with diagnosed ME with self-reported high level of a list of CCI symptoms/neck trauma history, 3. people with diagnosed ME with self-reported low level of CCI symptoms and relevant history.
Give them all standing MRIs. Then, in a blinded assessment, see if anyone can find any differences.
Would people not be able to feel whether or not they were experiencing traction??
But if it is only a small subset of ME-diagnosed people who have these abnormalities on MRI, then you'd need a rather large sample of PWME in order to be sure to catch them.
Ron Davis recently asked pwME who were going to have CCI surgery to get in contact, I think with a view to doing before/after blood tests(?) ie nanoneedle. Hopefully if he does this it will be in addition to the original proposed testing with other illnesses (eg MS). Also recently JD on twitter said that they were sending WDs MRI to a neuro surgeon to look at (?). It could be a game changer one way or the other.
Hopefully, whatever the results, they will be a bit more responsible in how the information is disseminated to the ME community.
I think you are talking about a situation where the spine is just very mobile. As far as we know this causes no problems at all. Circus contortionists do all sorts of strange things with their spines and do not suffer as far as we know. If there was a problem Olympic gymnastics would be banned.
Hypermobility in itself, as far as I can discover from the literature, does not cause any problems unless there is frank distortion of the anatomy as in a dislocation.
hEDS can have an issue with the filum not being elastic, and then stretching of the spinal cord can cause injury.I see no reason to think the cord would suffer with stretching alone in the context of a hyper mobile spine
Starting at about 4:25, Dr Patel addresses this issue and also mentions that twisting of the spinal cord causes symptoms and that the spinal cord os not supposed to be stretched.
For example, the surgeons embracing fusion surgery as 'curative' for CFS - which criteria are they using for CFS?
I'm guessing it's the referring doctors who determine the criteria for CFS and not the surgeons? How would a surgeon even begin to understand a patient with ME/CFS history when it's most likely the first or second time they've actually seen the patient?
One of the surgeons involved in this is now openly promoting craniocervical fusion as a treatment for CFS:
https://www.infosalus.com/asistenci...s-sindrome-fatiga-cronica-20191104142530.html
Well, this is ironic:
Read this disclaimer. Crucially, surgery carries risks and it’s important to remember that in medicine, the same exact symptoms can have multiple, different causes. We have no idea how prevalent CCI is in our community and there’s been no research into its relationship with ME. We do know that it is more common among patients with EDS.
https://medium.com/@jenbrea/how-infection-can-damage-the-cervical-spine-d43d3dac5734
Yeah, “we are finding” means “we patients are finding.”
Yes, there could be many other conditions people likely have concurrently with ME, but with no correlation whatsoever. Science is about seeing past apparent correlation / causation.In other words, spinal stenosis is very common and often asymptomatic. If that is what is being found on some of the ME patients' scans, then it may be entirely irrelevant to their symptoms, whether ME or not.