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I'm very hopeful that ME/CFS will be better understood and that understanding will result in treatments. And I do think that the work on Long Covid and the economic imperative of getting so many working age people productive again will contribute to that. There are so many people now demanding...

I disagree that the psychosomatics debate isn't that relevant to ME/CFS, or that the UK is an exception. In my country, I would bet on most doctors thinking that health anxiety/hypochondria/conversion disorder is a substantial part of ME/CFS. It's the same across the world, I know it's the...

More acclaim for this video: Suggestions of info to send a naturopath that sees a lot of ME patients and is also is educating other naturopath students?

Ha, yes, if only. Where's the down-side? You make the claims and, in the unlikely event that someone complains and the ASA (or equivalent depending on your country) decides the ad is misleading, you just say, 'oh sorry, we know the treatment helps, we just didn't realise how much evidence is...

There's lots to think about in this paper. One is how variable exosome contents are before, during and after exercise (see Figure 5). It means that any study of them has to really carefully control for exertion. I wonder how long exosomes last and if there is variation diurnally and also with...

There's a nice summary of work done on EVs in ME/CFS in the paper: Eguchi study link: Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al. Edit - having just read through the thread for that...

A brief item on Radio New Zealand https://www.rnz.co.nz/national/programmes/morningreport/audio/2018904918/nz-s-only-long-covid-clinic-to-shut It has a GP saying that they are seeing a lot of Long Covid patients and they don't know what to do with them and that they aren't funded to look after...

That's so interesting @rvallee. I only heard about this phenomenon recently, in relation to the persistence of the measles virus in the brain. The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Maureen R. Hanson Definitely, this is an area that needs more research.

Use of sildenafil (viagra) to alter fatigue, functional status and impaired cerebral blood flow in ... CFS, 2020, Friedman (Pfizer) There was that study, which possibly found some benefit, but there were a lot of problems, and so it ended up being a bit of a mess.

Thank you to the family for the fundraising and for publicising ME/CFS.

It's not that I have a vehement hatred. I think it's fine to ask people about their quality of life in a survey, or about a whole lot of other subjectively reported parameters, like pain. But, we know about those approaches, and we know that those approaches are subject to biases. I agree...

Interesting, thanks SNT. I think intermittent hypoxia is a significant part of the illness I have. The numbness in my arms that comes when driving or hanging out washing, or the frequency of waking with a completely numb limb is not normal. The postural orthostatic tachycardia, the pulse...

There are a whole range of wearables, some of which are relatively inexpensive. And there are a range of measures, among which measures of orthostatic intolerance and activity levels do relate to illness experience. But we were discussing that it is better to investigate objective measures...

Some issues with the controls in this study: The methods section says that the four cancer patients in the controls were disease positive controls: The results section says that the results from the cancer patients were excluded from the analysis. Table 1 lists 34 controls, 4 of whom have...

A couple of typos, some odd phrasing and missing references. This version looks a bit like a preprint. There's quite a lot of overlap in the BH4 levels, although a substantial subgroup of the people with ME/CFS do seem to have higher levels of BH4 in serum. The assay was double blinded...

I was interested to see that Gillian Leng, previously the leader of NICE and under whose watch the 2021 ME/CFS Guideline was written, is a member of the Cochrane Governing Board.

A discussion of the evidence from cerebrospinal fluid proteomic studies has been moved to Cerebrospinal fluid (CSF) proteomics

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes 2022, Schutzer et al There was this recent paper, also from the Bergquist team. Forum members were generally underwhelmed, mainly due to the lack of a healthy control...

I was about to rant about this, about how 0.97 is virtually the same as 1, but I note that the unit used is a point on the SF-36-PFS scale. So, for example, for every point higher in the SF-36 -PFS at baseline, there was a 3% reduction in the odds of achieving a clinically important difference...

Mean days of school attendance: Baseline 2.1 (presumably days/week); 6 months 2.1; 12 months 2.6 Yes, between the dropouts and natural improvers, these results are nothing. Number receiving home tuition: Baseline 13%; 6 months 24%; 12 months 24% Possibly a good outcome in terms of care for the...