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I don't think the NIH study (Walitt - Deep phenotyping) looked at mitochondrial structure, which is a desperate shame. The findings do sound compelling and the excerpts read well to me - I can see why people who were reading these studies when they came out might be convinced that this evidence...

That's an extraordinary thing to say about a paper that proposes a disease mechanism (that involves biochemistry). I think Margaret means 'denial of existing specific evidence of biochemical pathology'. That sounds like an interesting paper, I'll make a thread for it. However, it has to be...

There might be a role for ME/CFS charities overseas, to collect donations and allow people to claim a tax break, and then forward the funds on to the Norwegian team. For an organisation like OMF, a campaign for this need not cost it anything much, and might even bring some new donors onto its...

I'm very happy that Per Fink has retired. Please let it be to prune the roses and play with his grandchildren, rather than to join Paul Garner on a speaking tour. Thank you @Kalliope. I agree the whole text is worth a read - it is not long. I like the way it gives information, some of which...

A very nice, tightly argued paper. Looking at that excellent Figure 1, it's rather clear that there really wasn't that much of a difference between proportions of hard task choice anyway (the y axis). Most participants are choosing the hard task between 20 and 50% of the time. The regression...

On the Orthostatic Intolerance Measure: Here's the description from that linked paper: I'm not sure what I think about that. Given that they say that most of their ME/CFS patients were achieving a standing time of 20 minutes, the subjective difficulty score, determined by the nurse, becomes...

Oh, goodness. That is dedication above and beyond.

The Mason Foundation funded study that will be happening over the next couple of years sounds interesting - very detailed characterisation of 100 patients including people with severe ME/CFS, with repeated sampling. Daniel, You comment on the importance of patient input, and how patient input...

My impression the first time I heard Daniel speak was that he is a great communicator, a nice person and is clearly genuinely invested in contributing to finding the mechanism underlying ME/CFS. This presentation reinforces that impression. Thanks for the years of effort, and sticking with...

There will be people in the DecodeME team who will know before the public do whether the genetics findings in any way bolster the rationale for this trial. If they do, perhaps they could work with the Fluge and Mella team to help make a confidential case for support from Johnsons and Johnson...

It's really annoying to think that, should the drug be found to work, Johnson and Johnson, with their 'it doesn't align with our strategy' attitude, would benefit enormously. (They had ads here for some of their products, ending in a friendly American voice saying 'Johnson and Johnson. A...

We have moved posts discussing the possibility that people with ME/CFS are immunocompromised to a new thread: Are people with ME/CFS immunocompromised?

When I read that comment, I had the same reaction as you. I think 'no consistent... changes' conveys the current situation of some possibly interesting findings among plenty that are 'grasping at straws' in small cohorts - but no replicated findings. Perhaps I'm not remembering something, but...

Nice, although I'm not sure the character of WJH Boetker bears much poking into. Wikipedia As a 'success coach', it looks as though Boetker would have fitted right in with that lot with their competing interests. Probably the authors of this paper would have no problem with the quote, it's...

Oh, for goodness sake. I suspected the definition of mental health might be dodgy, and so it proved to be. Cognitive function and fatigue are mixed up with anxiety and depression. (Edit - actually they seem to have divided patient up into four groups, with the 'poor mental HRQoL' being...

Seems to be an awful lot of uncertainty in this study - selection biases, lack of clarity around diagnoses and pre-existing conditions.. . I'm not sure there is much of use that can be taken away from it. 6044 were eligible for inclusion, but only some 1700 completed all the assessments, and...

Kaufman is another who has profited from promoting unevidenced treatments to desperate people. A lot of harm has been done by the promotion of neck surgery as a cure for ME/CFS - families drained of funds, people's lives made worse by very invasive operations. I think there are suicides where...

Congratulations @Midnattsol!

Yes, and there's some irony with the forum name not being Science for ME/CFS also. I think most of the people who matter will be thinking about the science whatever name you use. But, I do think that going with the name 'ME/CFS' helps to keep the focus on the science, and people looking...

I agree with that. In the meantime, I'm really uncomfortable with an idea that recovery is rare in people who clearly meet ME/CFS criteria at 6 months. I don't think the evidence we have supports that. @Trish said I don't think we can say he probably didn't have ME/CFS - from what he said...