Reminds me of the plane ditching in the Hudson River a few years back, and everybody surviving. It was often described as the 'miracle on the Hudson'.They neglected to take into account the many millions spent on cancer research, the very well educated health professionals that treated them and the very expensive & organised support services available.
I find the timing of the release of the paper interesting. ... It's not only bad non-science; it's morally reprehensible.
Bad science is easier to deal with than bad faith.They’re pretending to want to know patients’ views of recovery, but are just cynically using patients’ words as an excuse to redefine recovery in the way that suits them.
I agree that people can search for meaning after becoming ill and that the meaning that they find may not be always helpful or accurate.
he should hand in his professional qualification as a management accountant. Not just that he should not work in the area but actually he should deregister himself and lose his qualifications.
Recovery does mean return to full health. Full stop. Anyone who is confused by this has no business being in this profession.
You can't redefine common words to fit your purpose.
“In the end the Party would announce that two and two made five, and you would have to believe it. It was inevitable that they should make that claim sooner or later: the logic of their position demanded it. Not merely the validity of experience, but the very existence of external reality, was tacitly denied by their philosophy. The heresy of heresies was common sense." -- "1984"
One person I know with ME had therapy (not CBT). Somehow he and his therapist came to the conclusion that he should hand in his professional qualification as a management accountant. Not just that he should not work in the area but actually he should deregister himself and lose his qualifications. This was a married man with children. I could accept if he decided he didn't want to work in the area, at least temporarily, but I don't think handing back the qualification was necessary. But he saw it as some sort of therapy.
And yet, White et al's definition of "recovery" still comes nowhere close to these definitions above. :/
Composite definitions of recovery
We operationalized two composite definitions of recovery: (1) trial recovery from CFS, and (2) clinical recovery from the illness, however it was defined.
To provide a definition of trial recovery, we calculated a hierarchical, cumulative definition that included the following domains mentioned earlier: normal range in fatigue, normal range in physical function, not meeting the Oxford case definition of CFS, and CGI scores of 1 or 2 (‘very much’ or ‘much’ better).
To fulfil the criteria for clinical recovery from the illness, participants had to meet all the criteria for trial-defined recovery (described earlier), in addition to not meeting either the International (CDC) criteria for CFS or the London criteria for ME.
I agree that people can search for meaning after becoming ill and that the meaning that they find may not be always helpful or accurate. One person I know with ME had therapy (not CBT). Somehow he and his therapist came to the conclusion that he should hand in his professional qualification as a management accountant. Not just that he should not work in the area but actually he should deregister himself and lose his qualifications. This was a married man with children. I could accept if he decided he didn't want to work in the area, at least temporarily, but I don't think handing back the qualification was necessary. But he saw it as some sort of therapy.
Well, that’s how he explained it to me. Perhaps it at least partly referred to registration with a professional body?I agree about therapists sometimes providing unhelpful ideas but there really isn't any such thing as an accountant handing back or losing their qualifications.
There is also a conflation of PEM with fatigue: "A characteristic feature [singular] is postexertional malaise or fatigue." Do they not know that these terms are not interchangeable?
And then: "The key CFS/ME symptom, postexertional malaise, may be partially responsible for this [boom-bust] cycle as it leaves individuals unsure as to how far they can push themselves (as symptoms may be delayed). However, this research suggests that a desire to leave the sick role behind may cause those with the condition to adopt unhelpful management approaches."
Aargh!
The primary feature of their 'model' is that it makes no difference how we behave, we cannot win. Our behaviour is always going to be interpreted as pathological.
‘Illness’ can be a social condition, Engenders a caring response, Admiration from peers ‘Isn’t she brave!”
Some who has found a prop
Does not necessarily want it removed
Seek medical attention For confirmation
For confirmation - not cure
Diagnosis is an end in itself
Secondary gain
Disability may hold advantages for them
Financial / Environmental Benefits, equipment, accommodation
Support, care and attention From family , friends / carers
Excuse for avoidance
Social mystique or importance
Having a ‘rare condition’
[Slide 27]
taken from https://www.eapm.eu.com/wp-content/uploads/2018/06/EACLPP_Turner_MUS_2002.pdf
The UK population is currently 66,650,000. 0.76% of that is 506,540. There's no way that many people have genuine ME, chronic fatigue may be but not ME.CFS/ME is relatively common: it is estimated that it affects around 0.76% of the population (Johnston et al., 2013).
Unfortunately, it doesn't though. Because these researchers work mainly in the mental health field, "recovery" to them means something different.
Here are some examples:
1. Recovery may not always refer to the process of complete recovery from a mental health problem in the way that we might recover from a physical health problem... https://www.mentalhealth.org.uk/a-to-z/r/recovery
2. Recovery means gaining and retaining hope, understanding of ones abilities and disabilities, engagement in an active life, personal autonomy, social identity, meaning and purpose in life, and a positive sense of self. (from Australian National Standards for Mental Health - derived from a UK NHS document)
3. Recovery means different things to different people. Personal recovery is about working towards something that is important to you. And having hope for the future.
https://www.rethink.org/advice-and-...ental-illness/treatment-and-support/recovery/
4. [Recovery] ... requires a paradigm shift in thinking from pathology and illness to self determination, life stories, human strengths, hopes and dreams, peer support and control by the user [bleurgh!] with support from professionals as partners, mentors and advocates. https://imhcn.org/bibliography/recovery-an-introduction/recovery-general/
And yet, White et al's definition of "recovery" still comes nowhere close to these definitions above. :/
But I think the pilot was also very modest. Most references to the "miracle" related to his considerable skills and experience, and the element of luck - good or bad - that always plays its part, no matter what the science and technology. Just on flying skills alone it was highly impressive. One wing would have only needed to be a little bit lower, and instead of pancaking flat in, it would have cartwheeled, with a drastically poorer outcome. Especially as the engine nacelles act like huge water scoops, and therefore a massive braking effect on each side. All the science and technology in the world cannot protect against the various random, yet hugely influential, factors at play in such a scenario.Reminds me of the plane ditching in the Hudson River a few years back, and everybody surviving. It was often described as the 'miracle on the Hudson'.
But the pilot was absolutely clear that it was no miracle, it was because the airline industry paid attention to science and engineering, and safety training. The exact opposite of a miracle.