Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, Jul 8, 2020.
very long Abstract
Whoa, I can feel a lot of expletives coming on, even from just the abstract!
"The experience of stigma from healthcare providers and their own social networks (Dickson et al. 2008; Larun and Malterud 2007) powerfully jars with a characteristic set of personality traits typically found within the CFS population: perfectionism, a conscientious and driven working style, and self-criticism (Asbring 2001; Whitehead 2006). These traits seem to serve as both etiological factors and on-going drivers of the condition as people with CFS make great efforts to maintain their premorbid active status, which often results in exhaustion (Hambrook et al. 2011; Van Houdenhove and Luyten 2008)."
So many reasons this contradicts itself and other BPS garbage.
One to read when my motivation to fight is low.
Can we just ban research into alleged personality factors as cause of disease.
It's just today's astrology.
Given that sick people are assumed to be at fault for spending too much time thinking about their bodies and their symptoms, doesn't mindfulness actually encourage that preoccupation?
I've never understood how meditation and mindfulness actually work or what they are supposed to achieve, so I'm quite prepared to believe I've got the wrong end of the stick.
I started reading it and it made me so angry. How dare they make so many assumptions about our personalities and beliefs affecting our health in this way. All that so called research they base their assumptions on is full of flaws. And why would we believe anything coming from researchers based in a "Centre for Mindfulness Research and Practice" - what happened to scientific skepticism - it sounds like advertising, even though it's in a University.
They start with a literature review that simply props up their preconceptions, not taking them outside their own little world of CBT and mindfulness.
I suppose at least their aim was to help people with ME cope with their symptoms, not to cure them. But if they do that by filling their heads with nonsense about it being their own fault for being the wrong sort of personality, or having flawed beliefs and behaviours, that is horrible.
Bah humbug. I refuse to read any more.
Bridie O'Dowd was mentioned as being part of the 'Wellness Enhancement Learning' course for CFS here:
That involved mindfulness and it doesn't look like there was ever much of a real assessment of whether it was of any value: http://www.thewel.org/theWEL/Results_files/Abstract of Wellness Enhancement Learning.pdf
Like PACE’s corruption of CBT, this is an enormous distortion of ‘mindfulness’ as originally intended.
‘Mindfulness’ developed in the context of early Buddhism in the mid first millennium BCE, not to promote specific ‘ideologies’ but rather to develop insight. Having specific objectives is seen as counter productive, hence the aphorism ‘If you meet a Buddha on the road, kill him’. The whole point of mindfulness is not to enforce a specific point of view but to increase the awareness in general and awareness of our own minds in particular. Within classic Yoga mindfulness techniques were also employed, but from the start (eg the Yoga Sutras of Patanjali, probably compiled in the century or so after the Buddha’s active teaching) mental health issues were considered a counter indication for use of meditation. Both in Buddhism and Yoga, mindfulness is a way of stilling the mind to enable the meditator to better experience reality, though the two might have different understandings of what reality is.
I personally use mindfulness to deal with pain. This means accepting the pain not fighting it, but also putting it in context. For example a migraine may feel completely overwhelming, but if you consciously extend your awareness to include all of your body and the environment around you, you become aware that the pain has definite limits and is not all enveloping. I may also abuse mindfulness by trying to locate my sense of self somewhere where there is no pain, perhaps in my feet or my hands or if need be on a mountain several hundred miles away.
For a teacher to seek to impose their understanding of reality on the meditator through an insight technique, seems to me a contradiction in terms, and risks in some people triggering a worsening of an individual’s metal and/or physical health.
who ARE these people that they interview? I never met a person with ME who catastrophises, nor any that focus on their symptoms. Everyone i know - as far as i'm aware if any of your disagree pls put me straight- but certainly for myself,, tends to ignore symptoms as much as possible. Ignore & dismiss as much as possible, to my detriment that it makes pacing quite tricky because i continue in a kind of denial about how much it hurts (for example).
Well there you go... if you had a different attitude, you would have written "this judgement frequently implies that they are malingering ..." but instead you chose to say people with CFS perceive it as implying that. They perceive the implication because that's exactly what it does imply, but instead you choose to represent it as something which may or may not be true. You're doing it yourself while writing about 'healthcare providers' doing it.
I wont bother with the nonsense in the rest of the abstract.
I actually like mindfulness meditation (mindfulness being defined as being fully present/aware whilst avoiding judging, & accepting things just as they are - not as a way to feel differently). But as @Arnie Pye said, that type of meditation does involve the body scan, the reconnecting with the body (- not something i can do when PEM is very bad because it just hurts too much), but i do find it a useful assist in not overdoing it - a kind of 'checking in' with how i'm doing before i overdo it.
But it's a double bind....first you tell us we are focusing on the body & symptoms too much, then that we need to do mindfulness which often focuses on the body & how it feels.
A few patients were kind enough to humour us in our delusions.
God knows why.
This is likely the dumbest thing I will read today and I include Twitter bots in that. Intelligence without wisdom is just finding the most complex way to do something stupid.
There is far too much opinion in medicine. This is nothing but ignorant opinion. Enough. All of this should be reimbursed for misuse of public funds. Education has been thoroughly wasted on these fools.
Here's a possible reason why i.e. the Hawthorne effect. Original "Hawthorne" research was done about 100 years ago (1924–32). As eminent scientists in this field, surely they already knew this!
To be fair (OK I shouldn't be) they probably needed publications - maybe no-one included a quality criteria (beyond being published)?
Discussed more here:
TheWEL courses - David Reilly
At least somebody is happy. "Excellent master thesis". Really?
Superordinate Theme: researcher confirmation bias.
Note strong participation bias (these findings are not generalisable to all patients):
Nine participants!! Nine.
Of course there's benefit in spending time with others with ME/CFS, picking up ideas about how to deal with the enormous losses. But it seems that the price the nine people paid for those benefits was being subject to psycho-sadism - being told that their personal failings caused and perpetuated their illness.
The really sad thing is this is not just some aberrant academic supervising an impressionable Masters student. These ideas seem to be held by many of the people that are drawn to roles 'helping' people with ME/CFS.
"a predisposition to guilt (strongly linked with people-pleasing)"+ "vexatious militant activists"
It's certainly confusing being a person with ME/CFS.
‘Nice’ patients v ‘nasty’ patients
Good reply on Twitter, @Grigor. I hope they read your blog you linked. I had a go too. The good news is, hardly anyone liked their post boasting about their wonderful research.
Separate names with a comma.