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Perhaps this paper by Nacul et al helps in arguing against the Oxford criteria, How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? The seems like an argument for not using any evidence that relies solely...

@Alvin, yes, but, whatever the authors actually did, PACE was anyway a bust scientifically in so many ways that we've an embarrassment of riches as far as discrediting it goes, so it ought to be impossible for NICE to justify using it it in the new guidelines.

According to the original paper, http://www.sciencedirect.com/science/article/pii/S0140673611600962

The Oxford Criteria has a number of exclusions, for example, anaemia and schizophrenia. Presumably 1088 people had conditions which prevented them from being included. And/or, their fatigue did not meet Oxford requirements, eg, was not present at least 50% of the time etc.

Oxford excludes "proven organic brain disease", so does not actually exclude PwME with neurological symptoms. The short paper introducing the Oxford measure is here, the criteria are on the second page, www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/

I wonder who the seven other doctors are who signed the complaint. While I don't agree with all of Sarah Myhill's medical ideas and approaches, I do appreciate all eight of them for going in to bat for us.

Presumably the NICE review will be looking at the scientific and medical evidence around managing and treating ME, rather than issues of investigator fraud. The PACE re-analysis stands on its own merits, while the original analysis does not, so I don't think we need to worry on that one. A bit...

Actually it appears that 'low fat' does mean something, in Europe at least, https://ec.europa.eu/food/safety/labelling_nutrition/claims/nutrition_claims_en. Personally I'm in favour of natural fats in meat and dairy (in moderation, evidently) - we evolved with them, and even developed new...

I don't know about this latest initiative, but in general I have got the impression over a number of years that AfME waffle on a lot, but rarely seem to actually do anything useful.

I'm not convinced it makes much difference. Regular (organic) yoghurt has around 4.5% fat, low fat (organic) around 1.8%. One would have to eat a lot for that to matter. Greek yogurt can be around 10% fat, but also has less sugar and more protein than non-Greek yoghurt. I suspect 'low fat'...

Actually this article appears to be a mangled version of this one, from last June, http://simmaronresearch.com/2017/06/the-evolution-of-an-mecfs-researcher-wyller-finds-evidence-of-herpesvirus-activation-in-chronic-fatigue-syndrome-mecfs/ The paper was published in September of last year (and...

As I understand it, CB was strongly involved in helping to get NHS services for ME/CFS in Kent. From the S&K Soc website, Mario Vergara-Williamson is one is the authors of the GETSET paper, as well as the Kent NHS clinic lead Consultant. For Sussex, according to the website,

It's not an elected position, so Colin Barton is not voted in and cannot be voted out.

Thank you for your reply. It was partly the dose level of the sodium dichloroacetate I was wondering about, given the potential for toxicity.

I get this too, with any excess mental exertion. It feels as if my whole brain is feverish. For me it's part of (cognitive) PEM. I vaguely wonder if it might be the subjective feeling that accompanies some sort of increase in inflammation/inflammation-related substances in the brain, because...

@ME/CFS Would you mind letting us know the patent number?

There are levels within levels within levels...

@MErmaid, I am quite puzzled; I feel we are somehow talking about different things, or at cross purposes, and not quite connecting. I certainly don't intend to make you feel unsupported in your goals. I looked to see if you had done an intro post (which, if you have, I would have read a while...

I'm not sure of the relevance of thirty years ago, in this context, but the idea of building a phone that would also play music was a very concrete objective, and touchscreen phones, computer software, apps, and ipods all already existed, to draw upon, so the iphone was arguably a development...

Money and other resources (time, number of quality researchers etc) must be part of the answer. But engineers are mostly solving well-defined, concrete problems to reach a well-defined, concrete objective. Research in the sort of instance you are asking about involves finding unknowns, and...