Discussion in 'General ME/CFS News' started by Andy, Aug 6, 2018.
The things I found most horrifying about the Mayo situation:
- their completely unscientific 'desensitation' hypothesis to justify GET which has no basis in research.
- their reliance on the BPS model, selective use of 'evidence' and complete ignorance of recent developments
- their lack of follow up of their own patients after their one month treatment.
To me this suggests that they are under the thumb of the health insurance industry which prefers this model to reality because it costs them less.
My conclusion is that the medical director of the Mayo Clinic has a 'belief' about ME, or something unethical is taking precedence over the interests of patients. @dave30th - will you be producing an article about Cochrane? I seem to remember you saying a long time ago that you might. Please take it on.
edit - tag
Given it's The Mayo Clinic, I would just apply Occam's razor and put it down to good old-fashioned hubris, the same condition that the CDC suffered from for three+ decades with regard to ME.
Yes, but we must be more scientific about this. Do we believe it to be the predisposing, precipitating or perpetuating factor?
This is unfathomable to me. If they are so certain of their treatment approaches, why don't they follow up their patients and document the great improvements they claim to observe.
according to Wiki:
Revenue: US$10.99 billion (2016)
Total assets: US$14.9 billion (2016)
and from their (Mayos) site:
Every year, more than a million people come to Mayo Clinic for care. Our highly specialized experts are deeply experienced in treating rare and complex conditions.
The right answers
Getting effective treatment depends on identifying the right problem. In a recent study, 88 percent of patients who came to Mayo Clinic for a second opinion received a new or refined diagnosis."
I imagine that ME/CFS patients are not that important to them in the big scheme of things.
So they believe in CBT/GET and facts don't matter because they have some unreliable anecdotal evidence that takes precedence over reality. The patients of their's that claim improvement are just appeasing them or using energy to get through the program and paying for it later (or in disease progression).
I wonder what the next step should be, former patients banding together and taking them on (who will likely be in worse shape but hard to track down), a lawsuit, public shaming, something else.
Where there is profit to be made or maximised, ethics invariably comes a very poor second.
I don't think this is directly about profit, i suspect they are wedded to the view they already have and admitting its wrong plus moving into something different and less "certain" is "risky then whats comfortable and "appears" to work.
Of course there is some cost involved in rewriting their treatments, but its probably not the major impediment, otherwise what we would need to is offer to reimburse them for the time involved in rewriting and they would jump at it and admit their current model is wrong. I don't see that as the elephant in the room (not that i was at the mentioned meeting)
if the treatment cant be justified as effective and theres nothing to replace it the set up they have to provide the treatment currently becomes defunct and they stop making money from it
of course they could make money from giving people supportive symptom management from a Dr but maybe the returns on that are lower
But we can make the same argument in regards to heart disease or ulcers, continuing to claim its caused by stress brings them money in since it would keep failing.
In general money is the deciding factor in many things but i don't think this is one of those times, this is probably a rare exception to that rule. But if throwing money at them will change things then lets negotiate a price.
The best part of doing that would be once its negotiated we can throw that at them as evidence of bad faith that they won't see coming.
Or if profit is the issue then we can invent a chargeable procedure that will work better but make more profit. Let them agree to that.
Either way we get the record set straight if its about money so lets go down this road
This is probably the best way to deal with acceptance of lies, negative press.
Lots and lots and lots of negative press.
This is the problem. The Mayo Clinic is renowned for succeeding where others fail - for being the court of last resort that will find the correct diagnosis/treatment, no matter how obscure.
That's all great, but it no doubt makes it doubly difficult for them to believe, let alone admit, that they have been wrong.
So, correct me if I'm wrong but sensitization is common to a lot of receptors and occurs in a lot of diseases. It has definitely popped up with ME/CFS. But do they provide any source that CBT/GET are effective at desenstizing anything? The treatment, I'm sure is less greed, but more absence of knowing what else to do.
Anyway, as a side top on the Mayo Clinic - they provide google with the sidebar info on diseases (at least, where I'm from). Whenever anybody googles "chronic fatigue syndrome" they see this picture . Which is an absurd first-impression image of what CFS is - a sleepy person at a party?
edit: Having trouble posting the picture (get an error message that it's too many characters).
I didn't mean it was necessarily directly about profit, but with any commercially driven enterprise, no matter how philanthropic the stated aims, profit is always a driver, even if less than obvious.
Okay so lets figure out the angle and work on it
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