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Jeff said there were 17 imaging cases. Those are what need to be published. Until we see those published I would very much hope no further cases are operated on.

Maybe I should put this in this thread too: I just did a Pubmed search on Craniocervical instability and fatigue. The result was: No documents match your search terms

What is needed is adequate pre-publication validation of imaging analysis. NEJM would get that done adequately and if the findings are bona fide there would be no problem with editors. JAMA would be another option. If the claims of CCI are real then publication should be straightforward.

Hi Jeff, I don't think the traction test tells us anything useful I am afraid. I think both from scientific and personal points of view discussion of personal histories here is problematic. With respect, I would personally recommend posting nothing about personal histories until a publication...

Dear @JenB and @Jeff_w, It is good to hear that you are both better. If there is a genuine link between CCI and ME symptoms then it is crucial that it is properly documented and the treatment is tested in a reliable way. We have to remember that people have gone into remission with a lot of...

I very much doubt there is any sort of hustings. People put their names forward and ballot papers are circulated to members - at least that is all I have ever come across for RCP.

I don't see any mechanism by which S4ME can later the outcome of the election - none of us will vote. So maybe the sensible thing is to lobby the winner? Presidents of Royal Colleges are generally also ran doctors who for some reason like important sounding titles. I would not expect any of...

I suspect it is the use of the procedure for cases that do not have symptoms indicated by the neuroanatomy or accepted clinical picture.

I would be interested to know who they are. Unfortunately, I think surgeons will collectively believe anything that gets them cases to operate on. Until the litigation kicks in. How would they know if all these symptoms were due to CCI? The neurology is anatomically wrong so they must have...

They can, but not at the level of the upper cord and brainstem. Neurology is specific. CCI is not controversial. It is standard neurology. I looked after people with CCI. All medical students know about it. Neurosurgeons throughout the world deal with it.

I am very happy to hear that Jen is better. As I have said before, there is no similarity between ME and the presentation of CCI or related cervical cord problems. (Cervical cord compression does not produce pain or fasciculation or brain fog.) I prefer not to speculate on one person's history...

I would say a week or so.

Various relevant people are aware of concern. Whether it would be productive to contact child protection authorities directly at this point I am not sure. As far as I am aware LP is not actively being used in the NHS at present. Publicity may not be in the interest of those originally involved...

Only that they have ME and we don't know why that impairs thinking. I don't think the scan show effort. I am not sure anybody knows what they show other than pretty patterns.

The methodology in terms of numbers studied is peculiar. It looks as if they did two different studies. The abstract gives no hard figures which it should. We would expect SLE patients to have more microparticles than controls and probably including bits of mitochondria because a central...

I agree. There is no good reason to think that HPV caused a neuroimmune reaction. Her problems have to be assumed to have some other origin. But FII sounds like the wrong analysis. My worry with these cases is that the child is caught between physicians giving what are probably unhelpful...

Sadly, I don't think their comments about effort and energy mean anything scientific. There is nothing about energy expenditure in the study as far as I am aware. I think their final statement in the abstract is hot air. The real finding of the study is that the ME patients' scans were normal -...

I agree, especially when it looks as if there is another set of guidelines under IAPT that puts ME/CFS under MUS and justifies the overall MUS approach by reference to findings in ME/CFS.

Yes, but it showed the same in the normal controls as far as I can see.

I think am probably banned from that place.