The thing that really upsets me about the BPS/MUS brigade is how the whole movement aims to discredit the intelligence of patients and our ability to recognise symptoms in our own bodies. The assumption we can't tell the difference btwn anxiety, deconditioning, and illness 1/
I am very aware (note: NOT 'hyper-vigilant') of my own body. I know when I am anxious, when I am sore because I haven't moved enough, and when I am sore and ill because I've moved too much. These three things all feel different. The BPS model assumes we don't know this. #MECFS
They say we are just not 'science literate' which is also insulting. I have a Master's degree, PhD and am doing a science degree. And I can say the model is fundamentally flawed from an epistemological, phenomenological AND methodological perspective.
But my awareness of this is discredited, because I am 'just a patient who doesn't understand science or her own body', and who 'must be anxious, obsessed with symptoms, etc.' It is a big steaming pile of crap. Most of us aren't idiots. We know very well what's going on.
What also really annoys me is that their entire argument is based on one incredibly vague statement: 'psycholoical factors are known to have physical impacts'. Like that's sufficient to explain an entire disease process. That's not science! It's a weak, untested, non-hypothesis!
Just because it is known that stress sometimes causes or perpetuates illness, doesn't mean you can extrapolate this to ME/CFS and assume it's true with actual testing your theory, and then actively publicise this as if it were true, make treatment regimes based on it!?
That is not science! That's major academic irresponsibility. We are taught in science degrees not to state that anything is known to be the case without reliable evidence, and to always be cautious of what we don't know.
Vague untested hypotheses like the MUS/BPS model aren't science. They aren't even plausible enough to be considered pseudoscience! They are like something made up by someone who read a couple of self-help books and knows nothing of epistemology or scientific method.
And, for some ridiculous reason, we, the patients who are subjected to this BS, get blamed for 'not understanding science'. And, what blows my mind, is the everyone buys it! Doctors, the media, NICE, the DWP. Has anyone actually looked at how unscientific the models are?
They aren't even based on experimental data! Just some vague ideas that some people 'thought up' and assumed 'might be a plausible explanation'. It's horribly unprofessional, irresponsible, unscientific, and harmful. They are in no way 'experts'. @NICEcomms what are you doing!?!?
@NICEcomms @NICEcomms why do you have more of these people on the guideline review committee than you do actual scientists?? We wabt actual scientists to create guidelines for our treatment! Biomedical scientists with knowledge of our disease! We are NOT anti-science, you are!!!
@NICEcomms By selecting a biased panel comprised mostly of people who are NOT biomedical scientists, you are demonstrating that your organisation is anti-science, not patients. We are fed up. This has gone on for 30 years. Respect us. Give us proper, biomedical scientists. #NoMoreHunkum
