ME Action and Mayo Clinic (!) win grant for diagnostic improvement

[Mary]

#MEAction & Mayo win Grant for Diagnostic Improvement - #MEAction Network

This is really amazing - kudos to MEAction!! Maybe with the cachet of Mayo, ME/CFS might start to get a bit more respect?

 

[wabi-sabi]

Of course I 'm pleased to see this... but up to a few years ago Mayo was a bastion of BPS. I have a very hard time trusting them now.

 

[lenora]

It's true, wabi-sabi, the Mayo has been pathetic in its diagnostic dept., as I've heard complaints....real complaints, for years.

I think it has finally realized that its neurology departments are lacking and are actually doing something about them. The Mayo Test Panel is now being heavily relied on for those of us suffering from Autoimmune Encephalitis, but even my now deceased neurologist didn't trust any of their input.

In my duties with other organizations I used to advise people not to go to them for help. There are fine, small clinics throughout the U.S., but a large one like the Mayo is useless for not just us but many many people with neurological challenges.

I know they're changing, I applaud them....but exactly how can their trust be won again? Yours, Lenora

 

[Mary]

Of course I 'm pleased to see this... but up to a few years ago Mayo was a bastion of BPS. I have a very hard time trusting them now.

I don't trust Mayo Clinic either, on its own, but I DO trust MEAction and Jaime Seltzer! It's a joint project - Mayo and MEAction applied for the grant together and won together, so I think we're pretty safe with whatever they come up with, because of Jaime and MEAction

 

[lenora]

Good! I hope the Mayo will take the advice of MEAction and people like Jaime Seltzer. Many people flock there looking for answers.....and they should be properly treated. I should add that I've never heard anything but good reviews for its cardiac department. We just need to be aware. Yours, Lenora

 

[wabi-sabi]

I look forward to them acknowledging their past mistakes and the patient harms they have done as part of their learning process.

 

[Alvin2]

I look forward to them acknowledging their past mistakes and the patient harms they have done as part of their learning process.

When pigs fly. On Mars.

I remember the PR member who had undergone their CBT and had told us about it. Didn't take us long to deprogram her(?) but the fact she was programmed by Mayo was very disconcerting.