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Several threads but there was one on outcome measures specifically where we talked about the logic behind objective plus subjective multiple threshold indices. I think I put some of that stuff into a publication at some point. I discussed it in relation to potential rituximab trials at the time...

That seems a good summary. A really big problem is that although NICE did not recommend GET it still recommends a 'management programme' without any evidence base. I suspect a lot of patient would like several sessions of advice on pacing, but the reality is that we know nothing about what to...

Yes, IiME had their last conference at Hinxton.

Well, actually, it has been lifted directly from our discussions here in 2017-18 - without apparently any recognition of that. If you look back you will find the thread where we talked about using RA scoring systems to combine objective and subjective measures. The real issue is whether or not...

Is there any mileage in pointing out to the commissioners that they are likely to be wasting a huge amount of money on multidisciplinary teams and that a doctor would almost certainly be far cheaper? I worry a bit about major patient/advocate involvement because patients are likely to say yes...

It doesn't. It is just that the ordinary test is too crude to measure the tiny constant shift in CRP that indicates a risk of heart disease in healthy-looking people. People with risk of heart disease have a slightly higher level even when they are well.

The Beentjes study looked at BMI (reported in the second draft I think) and there was not much difference. But I think we may also have to consider activity levels. The difference in CRP in ME/CFS looks to be very tiny. Quite a lot of plasma proteins shift with recumbency (albumin goes down)...

I would echo Kitty's comment. And add that as a general rule something that might produce a useful benefit is always going to have the potential to produce equal or greater harm - which may only be apparent yers later. We had that with steroids, practolol, thalidomide, Vioxx...

One thing that seems inappropriate to me is that it looks as if the tender is asking for bidders to be ready to provide a complete service immediately. Since we have no real idea what a service ought to look like I cannot see how anyone can honestly do that. The likelihood is that bidders will...

The link doesn't work for me @Suffolkres . It is still all very opaque to me what is actually being proposed. I am here to give a view if it is wanted.

I don't think pulse pressure is itself a problem. 93 is on the low side, which might be. Low pulse pressure can be a sign of a structural valve problem but if so it doesn't usually vary. I cannot advise specifically but if you are unwell probably best to consult the GP.

Yes, that is what it means- I was wondering what numbers you were referring to though? I am not aware that it is supposed to relate to any symptoms, although it can be a silent sign of specific conditions.

What do you mean by a narrow pulse pressure exactly?

It might do. Even for sleep disturbance we have a consensus that it is part of ME/CFS but do we have any data on how altered sleep patterns differ from other disorders?

I wonder what people think of this. It acknowledges a need to provide a service for severe patients. But otherwise it looks very much like a whitewashed multidisciplinary BACME programme with a notional doctor somewhere in the background. The amount of empty bureaucratic language is...

I would be very wary of anecdotal evidence like this. An increased heart rate need not be evidence of Dysautonomia. It may be evidence of a well-functioning autonomic system responding to something else. Tis is an area where pseudoscience constantly dominates.

My guess would be that the side effects are part of a general environmental intolerance problem that could be mediated by the hypothalamus (the most likely place to mediate it). I am not sure about evidence for needing lower doses or slower titration. That is a popular idea amongst private 'ME'...

An article in the Guardian today reports an actimetry study that links patterns of activity during the day to disease: https://www.theguardian.com/society/2024/nov/06/early-morning-and-evening-activity-could-reduce-bowel-cancer-risk I would be quite sceptical about the interpretation here...

My memory is that Newton said that she had made a decision not to continue working on ME/CFS because she could not get funding - maybe 3-4 years ago.

It does not seem to be a study of ME/CFS or LC. Maybe they have cited the wrong paper.