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I actually thought there was a recent paper showing that wearables worked fine in showing that people with ME/CFS do much less.

This is of course wrong, where your version is right @Sean. More pedantically, the aim of treatment is not to increase activity but to make the patient well enough to be able to normalise their activity if they want to. On the reasonable assumption that most people will want to then the...

My very recent experience is of a pump hidden in a box that is completely silent, but they may be pricy! I think the main problem with blinding is that those receiving 500ml will be desperate for a pee within half an hour.

Oystein Fluge let me go through the detailed kinetics of all the data from extended phase II. I forget the details now but everything I saw in all those trials was consistent with nobody responding to drug as such - just a combination of expectation effects and chance. The initial phase II...

There is no way this would have existed in the patient, other than maybe on the edge of the needle where a thrombus had formed during rather slow blood taking. The sample was presumably venous blood. If a lump like that was in venous blood it would get filtered out in the pulmonary microvessels...

Reminds me of the cases we treated with rituximab 25 years ago!!

A doctor of osteopathy is a doctor who is also happy to be a quack. Nobody with any ability would choose to qualify as an osteopathic physician. I have no idea why this system exists in the USA but it seems to be an admission that medicine is business rather than a public service and quackery is...

I have huge respect for Caroline. She just talks sense and never oversteps her evidence base. I couldn't muster the energy to listen to the rest.

Probably not. CIDP is a condition associated with clearly demonstrable autoantibodies if I remember rightly - I think IgM specifically. Small fibre neuropathy is not as far, as I know.

That's what we call an animal model. LC maybe, but I think the assumption is that they are trying to model something like ME/CFS.

OK, that would be fine, dextrose is hypotonic, Hartmann's a bit of a mix but maybe functionally a bit hypotonic too. The main reason for preferring drinking the salt and water is that you wouldn't need to go to hospital or pay £1000 dollars for the privilege of an infusion. When I developed...

Well, yes, they would do, even if it is taking notice when a patient mentions a surprising improvement. But things are a bit more complicated. The use of rituximab was a specific test of a hypothesis generated through the serendipitous observation of patients improving with B cell cytotoxics...

Trojan might be the word.

There are very real problems here but I think the obvious solution is a dose ranging study. If you think 500ml of saline is likely to be a realistic dose then compare 50ml, 200ml, 500ml and 1litre. Maybe run them all in at the same rate for the first minute then slow the smaller doses down...

So you are happy for the Lightning Process to be tried on everyone with ME/CFS based on reports of cure from Dr Garner's friends? You are happy for another hundred thousand people to be forced to do GET because clinicians are so sure it works? And for the psychologists to make a comfortable...

Yes, Campath can produce years of profound T cell depletion at doses that produce very brief B cell depletion. I think I suggested it as a way of targeting T cells in relation to a T cell theory for ME/CFS.

Hi @MelbME I can see the value in doing a well-designed trial of saline infusion, if only to show that it doesn't work, which I think is the 95% probability. With my ethical committee hat on I would have to say that I would not approve infusion of hypertonic or hypotonic saline. There is no...

I think they say they used 800uL of serum from each patient. It shouldn't have been hard to get 6.4ml. Pooling serum actually degrades the information so I cannot see another reason. If they didn't have enough mice they could have studied fewer patients but mixing all the patients together just...

Isn't there a n FND society, probably run by Jon Stone, though? Sharpe has the support of the Royal College of Psychiatrists and even the Royal College of Physicians when it comes to ME/CFS. The MS Association is different because everyone gets taught about MS and it is not a 'contested illness'.

In a sense maybe, but what we normally call research is investigation that reliably transfers to a general situation. And when it comes to the individual we have to face the question as to just how reliable these conclusions are about what helps pacing. How can we be sure that the change in...