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Letter from NICE today: Dear Jonathan, Re: NICE statement on the implementation of the ME/CFS guideline Many thanks for submitting your comments on the GRIP implementation statement. This is now going through our review and approval process. We are aiming for a publication date of 12th...

The tweet about trolls is peculiar. Maybe these people have the same problem as the BPS crowd - some other people are on to them.

The conclusion in the abstract suggests that the authors have no real understanding of what it is they are trying to do. The more the lab results correlate with the clinical diagnosis, already made, the less use they are, since the simply give you the same diagnosis. Shifting to new lab based...

It is a very neat story. This is how real science works. Most lupus is probably not primarily due to a TLR7 abnormality but if TLR7 can be blocked it might break the cycle of lupus whatever the initial trip. It might also break the cycle for things like RA although it might turn out to not work...

I have not looked at this in detail but I have a strong sense that this draft guideline is CRAP. That statement about synovial fluid is pure bullshit. We know absolutely nothing about any beneficial effects of exercise mediated by changes in synovial fluid. It is just made up pseudo physiology...

You don't 'simply put a value' because a machine generates it. You need to know what the machine reading means.

Thanks. That seems a pretty bizarre way to present data of this sort. Not sure what negative concentrations are supposed to be!

thanks I will try it.

Unless people are prepared to put some actual data in the abstract I am unenthusiastic about trying to wade through. I seem to be able to access a half paper with some 'snippets'. It all seems like deliberate obfuscation purely for the benefit of those making money out of the publication...

I cannot access Twitter threads these days. I get blocked from moving from the first shot.

It struck me more than once that there's a further problem if self-reporting: it’s hard to report that the nice people trying to help have been useless. Is this effectively controlled for? A simple piece of psychology that makes sense to most people - except, it seems, psychologists.

Looking at Webster's Medical Dictionary on Fatigue: 1: weariness or exhaustion from labor, exertion, or stress 2: the temporary loss of power to respond induced in a sensory receptor or motor end organ by continued stimulation So that is not the professional meaning. The professional isn't...

I think medical dictionary definitions need to be distinguished from how medics actually use terms professionally. Medical dictionaries are probably mostly intended for lay people. As far as I know doctors never use them. The definitions are probably coloured by a desire to be widely...

That looks like the sort of vague dumbed down definition that seems now to be very prevalent on internet information sources. Maybe everything is like that in the internet age now but I find it hard to see what better term to use. Moreover, when used as part of the specific triplet PEM there is...

That seems to me to be an insult to those physicians like Jason and Nacul who are trying their best to provide a usable framework for discussing ME. If patients aren't prepared to give credit where due then they are likely to find themselves completely alone.

Where does that definition come from? It is completely inappropriate and I have never heard anything like it before. Malaise is normally used when you know that the cause is likely to be an infection.

I was lucky enough to work for the NHS all my life and never needed a sick note. The people who needed to organise cover for me accepted that I was sick.

As far as I am aware physicians that use the term use it in that way. They understand that patients feel unwell with discomfort or frank pain all over. Malaise in the context of typhoid or viral illness is not anything trivial. The medical professionals who don't believe PWME really have bad...

I was taught the meaning of the word by my parents, who were both physicians. Malaise is used in social contexts but lots of medical terms are. I really don't know what baggage you are talking about.

Is this worth trying to justify? Since we know that ascertainment and variation in criteria make it pretty impossible to give a prevalence accurate to better than a factor of two and grading severity is full of caveats all we can usefully say is that a substantial minority are severely affected...