Search results

I think it is fair comment that CCC and other more recent criteria have used the term 'fatigue' when it is clear that what peope with ME/CFS experience is not any of the ordinary sorts of fatigue. But CCC does require PEM and I find it hard to understand what PEM is if it is not some sort of...

But the combination is there to point out that there was never any point in arguing about which name to use. As the CCC realised, they were being used for the same thing anyway. I don't really buy this idea that CFS covers a whole load of people with vague fatigue who don't deserve to be...

It is interesting to read the top line Google AI on ICC: AI Overview International criteria for Myalgic Encephalomyelitis (ME) emphasize a combination of core symptoms, including persistent and debilitating fatigue not improved by rest, post-exertional malaise (PEM), unrefreshing sleep, and...

I think that should read: Oxford or Fukuda or ICC = bad. CCC, IOM (CDC) = Ok. That is what we have been following, along with the vast majority of the research community. It would be clunky but why stick with a name that causes so much confusion and antagonism?

Good question. The next question is whether there are any lupus centres in the UK with people with nous. Which reminds me, somewhat off topic to remember a paper from Jo Cambridge and Nathalie Conrad which looks at demographics of autoimmune disease. Conrad N, Misra S, Verbakel Y, Molenberghs...

My thought is that the first thing to do is to openly discuss these things and to accept that misguided actions are not confined to any one group. Everyone is human. Sonya and I hope to meet in January. It will be on my agenda. ICC is as hopeless as you say but fortunately I have not see a...

CD19-targeted CAR T cell therapies would also eliminate B cells functioning as APCs, thereby providing an explanation as to why B cell depletion proves effective even in disease pathways uncoupled from pathogenic autoantibody production. This is a complete joke. The autoimmunity research...

My memory is that we looked at EBV seropositivity and lupus in the 1980s. Itt might even have been published by Patrick Venables and my mother (Joan Edwards). I am pretty sure lupus cases were found in EBV naive individuals. And of course the age of incidence profile for lupus starts going up...

That some other people think this is really interesting!

Thanks, I managed to download it but it wouldn't save as copiable.

That is not for me to say at this stage but I think the idea is to pin down exactly what role CA10 plays in pain and to see if a relationship between the DecodeME SNPs and this gene can be firmed up. They made a convincing case for being interested in CA10 to me, rather than the other way around.

I cannot see it on Pubmed. Does anyone have a URL to chase? Journal title?

And the popular press reports aren't exactly nuanced. It is a pity New Scientist is so dumbed down its approach.

I suspect there is a gap between the data and what they think they mean but I will try to dig it out.

I had a very positive meeting with the UCL pain geneticists. I didn't need to convince them of anything. They seemed interested in looking at CA10 anyway. It shows up in the right sort of dorsal root ganglion neurons. They seemed very receptive to the idea of research relevant to ME/CFS which...

Yes.

OK, so surely that is not oxidative damage but simply small molecule oxidation that is a normal part of metabolism. Most of our metabolism centres around oxidation - to produce energy. This sort of storytelling is unhelpful, to my mind.

I had a look on PubMed for Byron Hyde's contribution to the science: 1 Akureyri disease (myalgic encephalomyelitis), forty years later. Hyde B, Bergmann S.Lancet. 1988 Nov 19;2(8621):1191-2. doi: 10.1016/s0140-6736(88)90255-3.PMID: 2903396 2 Myalgic encephalomyelitis (chronic fatigue...

Why put this stuff out on the internet when the research community doesn't think it means anything?

Which has been answered. S4ME is now an anachronism but changing names is not simple. ME/CFS does not mean ME and CFS. It is clear that it refers to one category. Occasionally people misread it as and if they do not know what it means. Otherwise it has a single meaning, which, like rheumatoid...