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This is useful I think. 22% of the ME/CFS females did not qualify as being 'deconditioned' as defined here (i.e. their VO2 peak was at least 85% of that predicted for their age). Note how only 16% were not deconditioned one day later. So over a fifth of the ME/CFS sample would not meet the...

235 patients undergoing CPETS for clinical reasons 170 met ICC and Fukuda criteria = ME/CFS + 65 did not meet the criteria = ICF Of the 170 ME/CFS, 57 only had 1 CPET, and 38 had CPETs spaced too far apart, leaving 75 ME/CFS with two CPET spaced appropriately Of the 75 ME/CFS with two...

Where I am, there isn't really anything in the way of services for people with ME/CFS at all. Hardly anyone is going to actually be prescribed GET; it's more likely the doctor will just say 'perhaps you could try getting out and about a bit more?' and not advocate for help with household tasks...

Yes, I agree. I'm not completely sure that the CPET studies are rock-solid yet (and I've done a CPET and shown the performance drop, so I'm biased towards them being evidence) - we could use more replication from some independent exercise physiology researchers. But it is does look like...

Another research area that we need work on is the paired CPET studies. More replication from independent researchers would be good - more paired CPETs in ME/CFS vs really well matched healthy controls - so even match the activity levels as measured with monitors over several months Are they...

I've just caught up with this paper and have still only skim read it. But to me, it has a serious methodological problem. The sample is of males who have done CPETs as part of a diagnostic process. To be clear - no new CPETs were done as part of this study, the authors just looked at existing...

This. The Cochrane reviews are a major obstacle to getting better guidelines in place around the world. A finding that GET is useful for ME/CFS would be a tremendous set-back. I feel uncomfortable gambling on that, for the sake of Cochrane sorting out its internal issues. Cochrane seems to...

I don't think it's as clear cut as that. That study appears to have done CPET studies on a number of male patients over a period of time. The CPETs were part of a diagnostic process, which classed people as having ME/CFS or not. I think it's highly likely that anyone having a positive CPET...

One research question that is worth considering is trials of drugs prescribed for POTS in ME/CFS cohorts. These drugs are widely prescribed for people with ME/CFS, but we don't know if they work. If they do, then some solid trials would help more people benefit from them. If they don't, then...

Thanks for posting this @Ryan31337. I haven't read the paper itself, but it does look like a nice study, and the editorial is indeed interesting. It would be great to get some trials done in people with ME/CFS with strong orthostatic intolerance symptoms.

The second video is from February of this year. So, if she wondered at any point, that did not stop her carrying on. I guess enough patients got better to make her think that she was helping. But, with the published results from trials, and her own studies, I don't know how she could not...

Thanks so much @cassava7 for the 2012 video. I found a video of Professor Julia Newton speaking about GET this year - link here Professor Julia Newton on GET. My concern about her presence on the writing team grows. There is no evidence that the interventions related to activity that she...

Yes. But surely the patient/carer representatives on the writing team should have this knowledge? If those representatives don't know the significance of ME/CFS definitions, or know that dropouts are a common problem in GET trials to be watched for, or can't explain PEM to the other reviewers...

So, is this potentially the process? Writing team makes a protocol Protocol is peer-reviewed (peer-reviewers potentially including a team from S4ME) Protocol is released to wider public for comment Protocol is finalised Review is prepared (S4ME could run a somewhat parallel process to consider...

We have very little information about Kay and specifically about her knowledge of ME/CFS issues, but the information that we do have suggests to me that she has not spent much time becoming familiar with the politics or the science of ME/CFS. I don't see how she can be effective in guiding the...

Posts about Paul Garner (psychologising about Long Covid) have been moved the Paul Garner thread

The more the process is politicised, the more it deviates from a straight-forward scientific assessment (what evidence is there? is the evidence any good?; what does the good evidence tell us about benefits and harms?), the more it includes people who don't know what they are doing in a review...

That's a great example @Woolie. And then, if you were conducting a review of whether homeopathy helped ME, you would not need to have a clinician who is a big fan of homeopathy on the review panel, nor would you need to have a person with ME who likes homeopathy on there either, to explain to...

The process should not be a negotiation between two sides. It's a review of the evidence against the standards of good science. If there are expert patients (and there are), at least one should be used, but all it really takes is people expert in research methodology who aren't prejudiced...

@Medfeb I see that you have included this in your bio for the Cochrane Exercise therapy review: Is that the review that is the subject of this thread? Can you say anything about what has happened here?