USA - Mayo clinic

There was just a blog post on PR about the Mayo Clinic [Jacksonville campus]

[The Mayo Rheumy] suggested their three day course for Fibromyalgia to learn how to deal with what I have.

You see, the Mayo Clinic specialists think that since fibromyalgia and Chronic Fatigue share the same symptoms and that many people have both, that they should be just called the same thing... This was what their course was like:
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They then spent days telling us if we quit thinking we were in pain or we were too tired, we would magically quit being sick. To prove their point, they showed us a diagram that if you keep thinking something, it becomes the easiest path to follow in your brain, and your brain automatically follows it believing it to be true so if you make a new path "I am not sick" and follow that instead, you will quit being sick. Diagrams are scientific, of course, and even though their theory is just a theory, they presented it as if it is a common truth. They then showed us all the awe inspiring things that people could achieve physically with their body, just by thinking and truly believing it in their brain!
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I watched as the doctors pressured other patients into signing up for the program. They are exercising those with ME/CFS in big groups! It was madness!
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To prove their point, they showed us a diagram that if you keep thinking something, it becomes the easiest path to follow in your brain, and your brain automatically follows it believing it to be true so if you make a new path "I am not sick" and follow that instead, you will quit being sick.
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When you put together a group of people with 16-25+ years of education and they serve this up as their magnum opus, well... all I'm saying is it makes you wonder about a lot of things.
 
They then spent days telling us if we quit thinking we were in pain or we were too tired, we would magically quit being sick. To prove their point, they showed us a diagram that if you keep thinking something, it becomes the easiest path to follow in your brain, and your brain automatically follows it believing it to be true so if you make a new path "I am not sick" and follow that instead, you will quit being sick. Diagrams are scientific, of course, and even though their theory is just a theory, they presented it as if it is a common truth. They then showed us all the awe inspiring things that people could achieve physically with their body, just by thinking and truly believing it in their brain!
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This sounds a bit like the Lightning process or Gupta (the idea is always the same...)
 
Sounds like Mayo have institutionalized LP or something similar. What a complete mess. They are putting very bad attitudes on display. The big question is why? Do they really believe in this crap? Do they really think they will “repair” patients? Do they really think the messy approach will make patients better and satisfied? There are only losers here. Reputation of Mayo as fools growing, the absolute scandal of patients getting hurt and all sorts of resources dumped.

It could be very wise if Mayo as a starting point for intervention, took the completely opposite stand on human beings, meaning; people are strong, they do their very best and what is considered “good”, we ought to both listen and learn. Instead: humans = weak and wrong, can’t learn anything from them. It is sad and it is moving us nowhere. What is the next? Medicine in reverse to medieval times and astrology?
 
Peter said:
Sounds like Mayo have institutionalized LP or something similar. What a complete mess. They are putting very bad attitudes on display. The big question is why? Do they really believe in this crap? Do they really think they will “repair” patients? Do they really think the messy approach will make patients better and satisfied? There are only losers here. Reputation of Mayo as fools growing, the absolute scandal of patients getting hurt and all sorts of resources dumped.
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I would guess they think its science based.
PACE showed positive effect so they developed a program and using confirmation bias and patients being compliant "found" it works. There was no need to test it again scientifically because PACE did it for them.
PACE is still on the books and given their confirmation bias they think it works great so why tamper with "success".
If PACE is retracted they will likely still stick to what they know because its been on the books so long and by ignoring problems there is no problem.

When we have a drug treatment or a disease mechanism that demonstrates exercise leads to deterioration then they will revisit their "treatment". If enough patients speak out or there is a different watershed moment or government intervention then that might also lead to reconsideration of their "treatment"
 
I don't know how the medical insurance system works in the USA. Is it possible that the big insurance companies funding people's treatment at Mayo have specified that they will only fund CBT/GET based treatments? And that the Mayo doctor in charge of this chooses to turn a blind eye to research debunking CBT/GET because it's a good money spinner?
 
Trish said:
I don't know how the medical insurance system works in the USA. Is it possible that the big insurance companies funding people's treatment at Mayo have specified that they will only fund CBT/GET based treatments? And that the Mayo doctor in charge of this chooses to turn a blind eye to research debunking CBT/GET because it's a good money spinner?
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I don't think so. I don't believe insurance companies would typically cover Mayo Clinic CFS treatment - unless you had bought some sort of multimillionaire's insurance that covers everything.

It would be unnecessarily 'out of network' - i.e. your company would just tell you to get the CBT and/or some sort of exercise therapy at one of their places they have some investment in.

Typically you can only get covered out of network for some sort of specialist care that your plan's network lacks, or for emergencies. Well, CFS is not an emergency; and every network has CBT therapists and physical therapists, so they feel that they can handle your CFS case internally just fine.

I'm sure Mayo is happy enough to take patients' money from them directly.
 
Peter said:
There are only losers here. Reputation of Mayo as fools growing, the absolute scandal of patients getting hurt and all sorts of resources dumped.
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I would guess that the Mayo accountants and psychiatrists think their reputation trumps the reputation of people with CFS or Fibromyalgia and nobody would ever believe a bunch of patients with mental health diagnoses. And in the meantime Mayo makes money for old rope.
 
I would guess Mayo are less influenced by PACE and more influenced by the work of Jon Kabat Zinn.

JKZ did some work on the Tibetan Monk Matthieu Ricard that paved the way for the belief in mind over bodily control.

The work was interesting but I think the conclusions have been way overstated by many orders of magnitude. It's now less science and more a religious belief system.
 
MeSci said:
He appears to have been diagnosed with Lyme disease...but misdiagnoses are common.

https://www.gofundme.com/jakesidwell
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In June, which I believe was after he set up the GoFund page, he was doubting that diagnosis. See the tweets I collated here:
https://www.s4me.info/threads/netflix-afflicted-me-included.5321/page-6#post-96980
https://www.s4me.info/threads/netflix-afflicted-me-included.5321/page-6#post-96981
https://www.s4me.info/threads/netflix-afflicted-me-included.5321/page-6#post-96983
 
Not sure if he could use the money elsewhere better, after what I read about Mayo's treatment for CFS. Or does he want to finance more diagnostics? (It seems so? "and I am trying SO hard to find a correct diagnosis and to get well".)

Wow, 80.000$ (aim: 125.000$) just for Mayo? I would never consider doing that, no matter how desperate, unless I were really rich. It can't be that grand, can it? Or unless, of course, I knew 100% I will be cured afterwards.

He's talking about HUGE sums. Why were the 60.000$ lost? Where and how can you spend that much for treatment? I can think of several years of immunoglubulins, rituximab, plasmapharesis or other stuff - where indicated.
 
Rather than just saying maybe don't try Mayo, is there some better place to suggest? Especially if we are not totally sure what he has?
 
Merged thread

Mayo Clinic's Crappy Website

What’s going on at the Mayo Clinic? It has been more than two years since the US Centers for Disease Control and Prevention (CDC) removed cognitive behavior therapy and graded exercise therapy as treatments of choice for the illness it now calls ME/CFS. And Mayo still seems not to have noticed that anything has changed—unlike Kaiser Permanente, for example, which acknowledged earlier this year that it had been wrong about the illness.
 
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