USA - Mayo clinic

Thank you, @dave30th for another excellent article.

 

The thing is, the website is telling how they treat their patients at Mayo. Over the years, through forum posts and other social media channels, we have learnt that their service is all about group therapy, CBT, GET and the like.

 

Exactly, they have changed nothing because they recieve many me/cfs patients who are still trying to find out what's wrong, and offer to enroll them in cbt/get/stress relief services that they have a financial interest in, and are generally just comfortable with that system.

Do they want to stop those programs? Probably not.

 

The thing is for most discipline, Mayo clinic is the go-to place to get answers on what ails you. I suspect that new patient fall into this trap until they know better.

 

That isn't necessarily true today. Historically, it might have been, but now it is more PR/marketing... I've heard of plenty of bad stories not limited to ME or CFS...

 

one of the comments
"Does this have anything to do with Mayo Clinic’s ‘powerful’ partnership with Oxford University Clinic, I wonder? (https://mch-ouc.co.uk/about/#a-powerful-partnership) "

I didn't know about this partnership, also didn't know that Mayo/Ox have a clinic in Harley St.

 

The 'Oxford University Clinic' is in Harley Street. It seems to have the blessing of Oxford University but is presumably a private clinic using the name. A sign that PR/marketing has pretty much taken over everywhere I guess.

 

Quote #1:

http://www.investinme.org/Article-130 Williams Hooper Wesselys Ways.htm

 

looks like they've changed their website

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

 

Still missed the point that any increases must be within an individual’s limits and that people should be prepared that they may hit a ceiling even when only gradually increasing activities by small increments.

 

Mayo clinic website advice is useless, watered down pablum. The reading level is for age 7.

I use the CDC or the NIH websites for general medical info.

 

It reminds me of:

The Queen said
"Oh!:
And went to
His Majesty:
"Talking of the butter for
The royal slice of bread,
Many people
Think that
Marmalade
Is nicer.
Would you like to try a little
Marmalade
Instead?"

The King said,
"Bother!"
And then he said,
"Oh, deary me!"
The King sobbed, "Oh, deary me!"
And went back to bed.
"Nobody,"
He whimpered,
"Could call me
A fussy man;
I only want
A little bit
Of butter for
My bread!"

In this case:
For King read physiotherapy department
For butter read GET
For marmalade read pacing and common sense

In the poem and at Mayo the King gets his butter. I wonder what the NICE dairymaid will say next time?

 

loved that poem as a kid.

 

So really what they are saying is “we had to change the website because pesky patients were being difficult, but we still believe that exercise is going to make you better”.
Grrr..

 

Yup. Just like Cochrane. Keep the substance as is, change a few terms here and there.

 

To be fair it is vastly better than it was, which was utterly appalling. Still not good, exactly - the exercise bit is way too garbled for that - but apart from that it now roughly aligns with IOM/NAM. Baby steps.

 

Trial by Error by David Tuller:

UK Docs Speak Up on Long-Covid; Mayo Shifts Gears (a Little)

the U.K. Doctors with Long Covid letter is discussed on this thread
https://www.s4me.info/threads/bmj-letter-from-longcovid-doctors.16887/#post-288620