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Sadly, I think a lot of Cochrane's operations are beyond the reach of FOI requests. Yes, simply informing people in Cochrane of what to us is an appalling situation, even when bolstered by nearly 50 ME/CFS organisations saying 'this really is a problem', does not seem to be getting us very far...

You mean those diverse scavenging bottom-dwellers that eventually got overtaken by reality?

It's interesting to read what was planned for the new review and consider how it all went so wrong. Including how Cochrane now seem to be saying 'it's not our review process'. The message was that the 2019 review was not fit for purpose, and a new review would be in place by early 2022, with...

Sounds like a recipe for the physician never being wrong, and providing scope for prejudices to run unrestrained. 'Sure, that person recovered with biomedical treatment, but that doesn't mean that psychological therapy isn't the right treatment for someone else with the same disease.' Bad luck...

'Randomised clinical trial' is a nonsense term. The 'c' is supposed to be controlled - as far as I know, medicine is the only area where the 'controlled' sidles off to be replaced with a word that really tells us nothing more than what the title of the study should. A 'randomised controlled...

Or perhaps anyone who knows anything about this is busy with mask issues or trying to find some funding or something. And so the office intern, who knows nothing and doesn't care, was told to 'write something'. Either way, we do get to the same point. But yes, we aren't going anywhere. And...

'It's just a feasibility study. So we don't need blinded controls to understand the contribution of natural improvement and expectation. But oh, we have produced some rather good statistics about how helpful these treatments are - they might just find their way into the promotional material.'

Yes, and they didn't even look carefully enough to see that we had copied the IAG into the letter. That would be the IAG that has not answered any communications for the last two years. That would be the IAG that is only an advisory group - the clue is in the name 'Independent Advisory Group'...

It's terrific that RME Sverige (Sweden) is supporting the campaign. Thank you. Thanks also to the advocates that made that happen. 49 organisations.

Iris Knoop appears to have POTS: Yes, I think Trish's response to this is spot on. Most of the paper is fine and even sensible, which is interesting given Moss-Morris's supervision. But was it necessary? Probably not. Is it all part of knowing the issues better so that roles for...

There is this relatively recent study of leptin in ME/CFS: The Role of Leptin and Inflammatory Related Biomarkers in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2022, Assil & Younger On the face of it, higher levels of leptin seemed to be more characteristic of ME/CFS...

Latest update on the petition: OCT 18, 2023 — On the 8th October, we sent a letter to Catherine Spencer, Chief Executive of Cochrane. You can find a copy of the letter here. In the letter, we noted the multiple letters sent in this campaign, as well as the years of effort from advocates...

https://go.drugbank.com/drugs/DB09046 It's interesting, although I imagine correction of a lack of nutrient intake would help many symptoms, including fatigue and probably pain. It's good to hear that there might be a useful treatment for (at least some cases of) what has been labelled...

That sounds like quite a lot. In that 2017 paper, oxygen saturations dropped 15% from baseline when the participants had oxygen restriction similar to being 5000 m above sea level. That's just a bit less than the altitude where supplementary oxygen is typically used (and that's after a careful...

If I'm understanding correctly the 2017 paper linked above, the technique is ok for identifying changes in brain oxygenation in a person. But, it's not good for saying 'this person clearly has a problem with brain oxygenation and this person doesn't'; it's not good for comparing between people...

26% in the symptomatic group isn't exactly overwhelming, although I'd be quite happy believing that the hypoxia is something that comes and goes, depending on the demands placed on the body or specifically on the brain. I'd also be willing to believe that there are groups under the broad...

1995 signatures, would be great to push it over the 2000 mark

Here's the link to the thread about the Australian study in people with fatiguing illness: Markers of exposure to spotted fever rickettsiae in patients with chronic illness, including fatigue..., 2008, Unsworth et al On that thread, I mention the lab run by one of the authors of the Australian...

This is a 2016 paper but I thought it was relevant to the pathogen persistence and reactivation hypothesis. A study in Australia found rickettsias in a large proportion of people with ME/CFS, and I also have tested positive to them. Brill-Zinsser disease is when a Rickettsia species stays...

https://journals.asm.org/doi/10.1128/iai.00034-16 ABSTRACT Rickettsioses are emerging febrile diseases caused by obligate intracellular bacteria belonging to the family Rickettsiaceae. Rickettsia typhi belongs to the typhus group (TG) of this family and is the causative agent of endemic typhus...