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This might be a touch off-topic, but one thing that struck me personally is that patients are described as having 'chronic severe infection-triggered CFS/ME'. Looking at Figure 6, patients pre-treatment averaged ~5,000 steps per day. I consider myself to be mild/moderately afflicted, but I...

Anyhow, on the whole AfME thing: this is an open forum and even the members only posts are essentially public - I'm reminded of this cartoon. I would be very uncomfortable with declaring people/organisations persona non grata without a demonstration of their actually breaking forum rules...

I dunno, I use the fact I can do about half of the Private Eye cryptic crossword to falsely claim I'm some kind of intellectual at work...

In many respects, moving on to a larger organisation can be seen as a positive: that getting involved in ME/CFS research/advocacy is not the career death that it was once seen as.

At best all one can say about this trial is that it supports the need to have a proper double-blinded trial. In the responders it really does look like a decent response in self-report score (though with the emphasis on 'self-report'!) - but they were given 'extensive explanation on the details...

Are you thinking about Vogt rather than Vink? Mark Vink has written highly critical commentary on the PACE trial as part of the JHP special issue and his criticism of CBT is in line with previous work. Whereas Vogt has been critical of metabolomic approaches to ME/CFS and is a fan of magic...

On the DSM 5 piece I have some major concerns: So one has the scenario where a patient isn't suffering from depression, anxiety or some other psychological condition. But the neurologist also cannot find a cause for their symptoms. That is a real problem and I agree that bouncing between the...

I'm somewhat more optimistic, albeit for cynical reasons. The simple fact is that if a biological treatment was found tomorrow (say, for example, that the Rituximab trial had been a gigantic success) then I think they would simply fade away. That was exactly the case for stomach ulcers - you...

I tried to find a patent application to see if there was more information on the basis of this test. Unfortunately Google Patent is bloody awful to use so I drew a blank (apart from finding by sheer chance Naviaux's patent on Suramin therapy and using metabolomics as a biomarker for ME/CFS...

For context to... ...I would highlight that this week's New Scientist reports a separate study that shows that telomere lengths in women who have children are shorter by an equivalent of 11 years ageing compared to women who are childless. Yet AFAIK mothers don't die 11 years earlier than...

I think we should be wary of using phrases like 'proper ME patients', as if considering participating in an MRI study automatically rules one out from having 'proper ME'.

Would be interesting to see if there was a patent application backing this up - which should have given some details as to the evidence behind these tests. ETA: the papers backing this up are here: https://iquity.com/news/ I don't have time to take a proper look now, work tomorrow!

The Lib Dems aren't the force that they once were, but I'll share this: when I started out as a public sector accountant, my team would sometimes receive letters from MPs. I didn't really know who Vince Cable was at the time but his letters were always the hardest to answer, as he had a genuine...

My view is that perfect is the enemy of good... and to hear this discussed on BBC national radio in the way that it was presented was pretty damn good. And a hell of a lot better than I would manage if I was trying to summarise the myriad of different issues surrounding ME/CFS. Similarly...

Thanks @Valentijn , those are some useful points. I think you're absolutely right on not engaging with a study if it were to use Oxford criteria, and I'd also be wary of the phrase 'bona-fide researchers' w.r.t. information sharing. As to the bit around whether the immune system 'affects...

You're right, there are a small coterie of BPS proponents who will always argue that any finding supports their model, by dialling up or down the B, the P or the S depending on circumstances. I suppose the flip side of that (which is why I'm a fan of using depressive disorders as an additional...

I suppose the counter-argument is so what if they do? That would still be progress and I'd be wary of arguing that scientific research shouldn't be undertaken just because it might find an overlap with bipolar.

Personally, I'd rather that studies like this did use a depressive disorder as a control group, alongside HCs - provided that they exclude for comorbid depressive disorders in the ME/CFS group. I'm tempted to sign up. Just need to decide whether I can schlep up to Oxford or not.

I'm not sure it does - AFAIK the reason companies like Yakult can't add health claims are two-fold: There's little evidence that probiotics are useful for the general population who doesn't have IBS. This is why companies like Yakult, Activia etc have to be careful about making health claims...

Looks like there's some good stuff in here. My brain is too tired to do a proper hunt today, but have any of these findings been published in scientific journals? (I can't remember whether findings that arise as part of an MPhil/PhD thesis need to be published in the thesis exclusively, or...