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I am fairly sure everyone uses the data sheet recommendation of 100mg methylprednisolone IV.

Somebody did. My comments are on the CCI thread I think. It would be good to have a new paper on prevalence but I doubt the 1/5000 figure is that far off. I would urge Emma to look at the wording of the toolkit and clarify it. The old joint hypermobility syndrome is definitely not a subset of...

Yes but the effects would only have lasted six hours. And we know that these agents do not routinely have a lasting effect onPWME. When I said plain water I was being more or less metaphorical.

The interest in mast cells in arthritis really goes back to a paper by Adrian Crisp around 1994. But nothing has ever indicated that mast cells have a special involvement in human joint disease - it is just that they are present in all connective tissues in bucketloads and are always caught up...

I would be interested to know what @WillowJ thinks of this. WillowJ and I have been debating the merits of various approaches to hEDS. One of the aspects of the new definition of hEDS that does seem sensible to me is a requirement for multi system involvement and various pointers towards...

I agree that ME is not fatigue but I think patients who still felt significantly ill would not rate fatigue as nil. 'Fatigue' is accepted as the index of feeling ill in the absence of a better term.

I am not sure what you are meaning by multi-system nature of the illness. This is often quoted but I don't think we have any evidence for it. There are lot of symptoms but the mechanism is unknown. That being the case I am not sure why recovery should seem 'wrong'. The 'placebo' effect covers a...

In elderly patients who may have kinking of vertebral arteries passing through cervical vertebrae immobilisation might prevent blackouts but that does not seem relevant to what we have heard so far. Vertebral artery kingpin is not normally assocaited with CCI but with age-related osteoarthritis...

This account was actually what made me think there must be a different explanation. My memory of all the details is incomplete, having now been ten years retired, but this is my understanding: The main purpose of traction for CCI is not usually to lift the brainstem but to prevent the nodding...

No absolutely not. That is what I am begging those involved to do - get some imaging and publish it. What I consider unethical is referring for surgery. And I don't really buy the idea that nobody is being referred for surgery on the neck to cure ME. Somebody is referring for surgery...

I have chosen a slide of the results from the open label extension rituximab study for my PACE presentation to my old academic unit on Wednesday. The more I look at it the more I realise that if you want a placebo effect (which Knoop and White said is how CBT works) then rituximab is a darn...

This section of a post has been copied from this thread: Jen Brea: My ME is in remission And subsequent posts discussing it moved from that thread. I have chosen a slide of the results from the open label extension rituximab study for my PACE presentation to my old academic unit on Wednesday...

Valid argument. But suppose the CCI had been there throughout and the ME only persisted because of medullary compression? I don't think I think this likely but it just about makes sense. The other thing is that if the tract that is misprogrammed and controls the ME is fed by neck...

Now that is what I call an inspired question. It is hard to see how CCI would interact with a general immune or metabolic problem. But suppose that ME was a bit like narcolepsy except that rather than being a failure of the hypocretin cells in the hypothalamus it is a problem of reprogramming...

I agree that it is worth digging down to try to understand. I am not quite sure what you are wanting to imply by some of your later questions but the big above I can comment on. CCI was part of my practice as a rheumatologist. No patient of mine with CCI had a presentation that one would...

Dear @Stewart I don't know how old you are but by middle age we all have foramina stenosis at a couple of levels in the cervical spine. And foraminal stenosis does not cause back pain. It causes pain and tingling in the fingers. Sorry to be a typical rheumatologist but there is nothing in your...

Dear @JenB With due respect to Dr Kaufman, I don't see any ethical basis for further surgery on PWME and I would advise strongly against it until we have the background information that would justify it. My understanding is that in your case the surgery was considered indicated on grounds of...

That does not seem the right balance of argument to me, @Stewart. We don't actually have an evidenced account of cervical surgery correcting a cause of ME/CFS symptoms - which is what is claimed has occurred. We have no pictures. I have asked for those involved to press the health professionals...

Proving one is wrong about x is fine. That is not what I was talking about. What I was talking about is proving something that contradicts a premise of the hypothesis being proven. The hypothesis was that people defined as having no laxity in any internal organ beyond joints have laxity in...

I don't really want to plough through issues of hypermobility but I think it needs to be thought through because of the concerns about it being the basis of ideas that may lead people to have inappropriate surgery. I was talking about working with Rodney Grahame in 1979 - long before Rodney...