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There is a major issue here when we combine thinking like this - which I can see how they have convinced themselves of what they are saying not being fallacial - with NOT actively courting a programme of genuinely proper expert patients. And indeed spending just as much time and money and...

I was going to say until I got to the second sentence of the second para: if having Hoover's sign is how you define 'having FND' then of course you've given yourself a can't lose situation on that measure because what confirms 'that designation to the negative category was correct' is also the...

and worse you don't even notice it (or don't notice how bad it will be as you think it feels a bit bad, but don't know the half of it until 6months a year later speaking from experience) a the time. Because you can't imagine it and can't know where your body is in the scale vs 'how much' is...

I wonder whether this is another area that flags the issue brought up on another thread where exploratory and descriptive research is underfunded - albeit it surely would need close attention from funders to still have defined goals and points to the investigation and definitely standards that...

Yep they sort of need to get, somehow, 200 people in who have the Hoover's sign and check longitudinally it isn't explained by something else without an FND diagnosis that means such investigations and follow-up and annotating as history doesn't happen. Of course that latter part of the...

Yes just because it is exercise - and has been done to the point of proving no more trials are needed, but was counter-intuitive in the first place unless your job happens to be in pushing it - doesn't make it any less wasteful than if they were spanking the money at 'eating peanut butter...

I know in marketing there is the need to get people to relate eg if giving a figure giving something ballpark to give a sense of what that magnitude means. I hate to say it but women feeling awful or collapsing is just a bigotry people are happy to write off and not try to imagine could happen...

is the cliffhanger approach normal for the abstract to what tantalise the reader into what happened next. It only seems to be something I see with FND papers so I guess that defines them as 'the next level in storytelling-focused 'researchers' vs the CFS stuff. Pay to read more and find out if...

Indeed it could begin with simple surveys that give pwme a list of different question types (leading, worded with 'not' the wrong way, using scales that are hard to understand what they are getting at) and a list of different circumstances/conditions e.g. when completely rested, have done a...

And yes, I do believe it should be straightforward to do studies showing exactly how responses can be influenced/changed by use of certain techniques for pwme. I've long thought that the CBT-related ones, and their various measures - before we even add in the conditions like people being...

Ok, maybe the term I'm looking for is 'a code of conduct' for methodology, but one strong enough that it goes to ethics committees as something serious highlighting that where methodologies fail to account for these vulnerabilities in design there will be questions regarding reliability and...

I know certain personality types of 'communication techniques' can basically outpace our conversation/thinking threshold and force/walk us to say things we don't agree with or mean. And hours afterwards even the most assertive of us would be stunned at how someone has managed to do that. But...

I want to bring this up from a methodology perspective which I think is fundamental to studies into ME/CFS past and present. Basically terming, rightly in the context of studies, pwme as 'vulnerable' under certain conditions and flagging that data taken under these without safety adjustments can...

There was a famous moment in the Uk during the BSE crisis when a politician fed his young daughter a burger on camera in front of the press. is that a similar thing?

Things like this all need to be forcibly consigned to a research assessment unit (ie subject under research funding terms) called ‘troping studies’ just so people are at least aware and funding given at least as much to decent psychologist and those who study the impact of such propaganda to...

That whole section to me is a view inside the mind of disability bigotry. shocking and I hope that some decent scientific psychologist, sociologists and studies of political rhetoric/populism start collecting this type of work as manifestos to study and what could be going on in the minds of...

Did he really suggest ACT? So the punchline of this manifesto is the bigotry solution of a conversion course to make the disabled accept the 'hassle' aka whatever harms, consequences and inappropriate behaviour is bundled under that, so those who can't behave properly can what pretend the fact...

Here we go again, I remember one from maybe a year ago using the same 'hassles and uplifts' - and I have big concerns that this is just reframing incidents that will cause PEM by throwing someone over their threshold, just like almost everything else about ME/CFS got reframed into something else...

the poor so and sos with this condition. It really isn't on anymore for dodgy sections of certain subjects to be allowed to continue with made-up personality terms just to slight people with certain conditions. These really are inventions as per psychology with things like 'perfectionism' not...

I'm a bit confused, as I can't access the full article (and also the conflicts of interest they note are at the end of it), what they think is 'managing FND' from this. I was initially anticipating given a scan of the measures that it would be seeing whether diagnosis and treatment improved...