Search results

Unless explicit permission has been received I think a lot of people would respond negatively to their emails being posted on a public forum and being subjected to criticism. Yes Cassava has certainly tried to stay civil and respectful, I'm not trying to be too critical of anyone here. It is...

I completely agree with the criticism of Doctors with ME, but it needs to be kept in mind that people are not used to or prepared for being discussed on a forum like this in this manner, especially having their emails posted etc. Personally I think unless you've gotten explicit permission to...

There's going to be another meeting at least, so perhaps there's still a chance something will be done. If anyone is an Austrian citizen and over 16 they can support the petition by following the instructions here:

Objectives: To analyse researchers’ compliance with their Data Availability Statement (DAS) from manuscripts published in open access journals with the mandatory DAS. Study Design and Setting: We analyzed all articles from 333 open-access journals published during January 2019 by BioMed...

She used a "mass-blocking tool", which I assume works something along the lines of mass blocking people that are all connected to eachother. I doubt she set out to specifically block pwME, but because she blocked a few people with ME that probably meant masses of others were blocked too

The Cult Information Centre does seem interested in a specific type of cult called a "Therapy Cult", one of the characteristics of which is that they "Appear to offer association with a group giving courses in some kind of self improvement or self help technique or therapy." Source...

To be clear, I'm not making excuses for cochrane on things like this. They have no excuse for not correcting those errors. What I'm saying shouldn't be interpreted as any kind of defence of cochrane. I'm trying to explain the function of cochrane, and what I'm saying shouldn't be interpreted as...

The IAG or anything related to the IAG isn't specified in the cochrane handbook as far as I'm aware. So I think it would be viewed as something that falls outside the purview of the handbook. The existence of the IAG still isn't going against their basic function as an organisation that produces...

To clarify, I'm not even defending Cochrane. I agree with most of the criticisms of Cochrane, and I am also deeply disappointed with how this review has gone so far. I am just trying to explain what the purpose of Cochrane is and how they work. Their entire purpose is to conduct systematic...

Well, as Jonathan Edwards has correctly pointed out previously there is actually quite a bit of flexibility in these processes. I am not an expert on this, but I believe there may be enough flexibility to accomodate people's concerns to an extent. And as other various people have pointed out...

Yes people should advocate for better things if they don't like them. But people should be aware of what is possible and what isn't, and how things work. I don't want people to believe that certain things are possible in this cochrane review which are simply not possible. And the fact of the...

I'm not saying they need to follow rules set out by Mass General, I'm providing a source on how long systematic reviews take. Here are some other sources too: https://guides.hsict.library.utoronto.ca/c.php?g=430254&p=5018365, https://bmjopen.bmj.com/content/7/2/e012545 Again, I'm not aware of...

If you look at the link I provided: https://libguides.massgeneral.org/c.php?g=651077&p=4565528, the literature search and data collection are only some of the stages of the process, and the others also also very time consuming. I'm also not aware of the literature search and data collection for...

An investigation into the psychometric properties of the Hospital Anxiety and Depression Scale in individuals with chronic fatigue syndrome P McCue 1 , Cr Martin, T Buchanan, J Rodgers, Ab Scholey Affiliations PMID: 21974733 DOI: 10.1080/1354850310001604568 Abstract The study sought to...

I thought the point of this review was so that stakeholders are kept updated so they can give input and feedback etc. at each stage of the process. If things are actually moving forward they should be updating people on the progress (if it's anything noteworthy) It ought to be kept in mind that...

That's a good idea, maybe. But I don't see any mention of that in the paper, the other scales don't seem to be normalised, and I think you'd expect the 6 month ME/CFS scores to be lower in that case. So I'm confused

The mean scores of the severe ME/CFS group vs non-severe vs recovered on various questionnaires can be seen in the original paper for the prospective cohort study here: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8664491/. I've inserted some of the scores here if it's of interest to anyone...

I personally struggle to gauge how comments I make (and other people make) criticizing certain people or certain research would be received by more disinterested people - whether they would see the way I'm responding as appropriate, and the tone and language as appropriate and persuasive. It's a...

It doesn't seem exactly the same as central sensitization. It's defined as "a tendency to perceive normal somatic and visceral sensations as being relatively intense, disturbing or noxious", and the term has been around since the 1980s: https://en.wikipedia.org/wiki/Somatosensory_amplification...

How much power did he actually have to do something? I doubt all the people in the rest of the NIH were very invigorated to do things about ME/CFS, and congress was mostly placid. In those circumstances it's unclear to me whether he was actually in a position to do much more than he did. I've...