Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

Learner1

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I think we need to get each of these content providers to change their ME/CFS content. It is such an uphill battle to have doctors, health insurance, and disability companies support us.

Having this understood as a medical problem, with immune dysfunction, microbiome disruption, and nutrient deficiencies (as found by Naviaux, Armstrong, et al.) rather than a psychiatric problem (where disability benefits can be cut off after 2 years and psychiatric drugs, which mask the problem and don't address the immune dysfunction, are prescribed), would be useful to many of us in getting help when we go to these major institutions like Kaiser or the major research university I found the Healthwise content at.
 

Webdog

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Having this understood as a medical problem, with immune dysfunction, microbiome disruption, and nutrient deficiencies (as found by Naviaux, Armstrong, et al.) rather than a psychiatric problem (where disability benefits can be cut off after 2 years and psychiatric drugs, which mask the problem and don't address the immune dysfunction, are prescribed), would be useful to many of us in getting help when we go to these major institutions like Kaiser or the major research university I found the Healthwise content at.
The Institute of Medicine report stresses that ME/CFS "is a medical — not a psychiatric or psychological — illness". I've used this argument in my correspondence with Healthwise (and Kaiser Permanente).

https://www.ncbi.nlm.nih.gov/books/NBK274235/

Also worth noting that the CDC (which never once mentions neuro or immune symptoms!) at least warn about the use of psychiatric medications:

"Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects."

https://www.cdc.gov/me-cfs/treatment/index.html
 
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Thanks Mary - I found your post really informative. I'm not sure if you are active on this site at this time, but I ended up on it (just recently) because I was encouraged by my Mom-in-law to go to Mayo Clinic to get help with my health issues (the most debilitating being CFS/ME). I'm not optimistic that they can help after reading this, but if you (Mary) or any other peeps on here have any info as to where I could get help, I would greatly appreciate it. I am in Seattle and have seen dozens of MD's here, but have not had any help. Thank any of you in advance for any thoughts, advice, etc. xo Leigh
 

Mary

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Hi @leighleigh - the Mayo Clinic is still advocating GET (graded exercise therapy) and CBT (cognitive behavioral therapy) for ME/CFS and I have never seen any positive reports from members who have gone there so I don't recommend it. David Tuller who is a very fierce and vocal advocate for ME/CFS patients recently wrote on his blog about how Mayo is still in the dark ages re ME/CFS (http://www.virology.ws/2018/08/06/trial-by-error-mayo-still-champions-get/)

Several people have been helped a lot by Drs. Kaufman and Chheda at the Center for Complex Diseases (https://centerforcomplexdiseases.business.site/) in Mountain View. I saw Dr. Kaufman almost 3 years ago and he was unable to help me, but he has helped many others. Here's one thread about Dr.Kaufman: https://forums.phoenixrising.me/ind...-on-long-term-outcomes-with-dr-kaufman.55707/

If you have a question for any member, you can tag them by putting the "@" sign in front of their name like this: @Mary, and they will get an alert that you're tagging them and hopefully will respond. Both @Gingergrrl and @Forçe e Honra have seen Dr. Kaufman and think very highly of him.

There may be doctors in the Seattle area who can help you, and I'd suggest asking @Learner1 - she lives in that area and I know has seen several doctors up there.

You can also do a post in the ME/CFS doctors subforum, asking for names of doctors in your area, and just names of good ME/CFS doctors in general. Unfortunately, they are few and far between! :aghhh: I'd also suggest just scrolling through the ME/CFS doctors subforum - you may find some names that way too. I would like to go the Institute for Neuro Immune Medicine in Florida led by Nancy Klimas, but money and health make that pretty impossible.
 
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Mary

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@leighleigh - if you go to the top of the page you'll see your user name, inbox and alerts on the right hand side. Scroll over "inbox" and it will give you the option to start a new conversation. Click on that, and I think you'll be figure it out from there how to start a conversation with @Learner1 --
 

Gingergrrl

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Both @Gingergrrl and @Forçe e Honra have seen Dr. Kaufman and think very highly of him.
@leighleigh I have seen Dr. Kaufman since 2014 and he is the best doctor I have ever had and I credit him (along with my MCAS doctor) for giving me my life back. Feel free to PM me if you want more info re: Dr. Kaufman (but @Learner1 can tell you as well). I truly cannot recommend him highly enough. But whether you see him or not, I would absolutely NOT go to Mayo.

In addition to everything that Mary said, there was recently a story on CNN re: Mayo refusing to discharge an 18 year old patient (who initially had a brain aneurism and surgery) and tried to alienate her from her family and get guardianship over her. It was similar to the case of Justina Pelletier and I'd thought about posting it on PR but never got a chance. I would not go to Mayo if my life depended on it BUT they do have an excellent lab for blood tests and I'd trust their lab 100% if your doctor were to send samples there for testing. But short of their lab tests, I do not recommend Mayo.
 
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Thank you so much for your thoughts, @Gingergrrl, I really value your perspective. I did read the story of the girl being held against her will...so between that and what I've read here, well, I'm not considering going to Mayo anymore!
Now, to figure out what I am going to do...

Thanks again,
Leigh
 

Mary

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there was recently a story on CNN re: Mayo refusing to discharge an 18 year old patient (who initially had a brain aneurism and surgery) and tried to alienate her from her family and get guardianship over her. It was similar to the case of Justina Pelletier
I missed this story - it's in 2 parts - it's pretty harrowing! :nervous:
Part 1
Part 2
 

Gingergrrl

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Thank you so much for your thoughts, @Gingergrrl, I really value your perspective. I did read the story of the girl being held against her will...so between that and what I've read here, well, I'm not considering going to Mayo anymore! Now, to figure out what I am going to do...
No problem @leighleigh and I am happy to help if I can. I am glad that you will not be going to Mayo and they do not deserve your money or you!

I missed this story - it's in 2 parts - it's pretty harrowing! :nervous:
Part 1
Part 2
Thx for posting this @Mary and I really think it is a cautionary tale that deserves it's own thread. I had wanted to post it but never got a chance. It horrified me (as a social worker) to read about the social workers at Mayo and wanted to add a little disclaimer that this is NOT how all social workers behave! Although I would assume the entire Mayo staff has been indoctrinated into the philosophy of the Mayo doctors that they are #1 on the planet and can mess with innocent patient's lives as they please.
 

Mary

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Thx for posting this @Mary and I really think it is a cautionary tale that deserves it's own thread. I had wanted to post it but never got a chance. It horrified me (as a social worker) to read about the social workers at Mayo and wanted to add a little disclaimer that this is NOT how all social workers behave! Although I would assume the entire Mayo staff has been indoctrinated into the philosophy of the Mayo doctors that they are #1 on the planet and can mess with innocent patient's lives as they please.
Why don't you do a separate post? I think that's a great idea. I had no idea Mayo would do this sort of thing and I think people need to be aware of it. It sounds like the doctor was not pleased when a patient family stood up to him.

I could do the post but you have a different perspective being a former social worker.
 

Gingergrrl

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Why don't you do a separate post? I think that's a great idea. I had no idea Mayo would do this sort of thing and I think people need to be aware of it. It sounds like the doctor was not pleased when a patient family stood up to him. I could do the post but you have a different perspective being a former social worker.
I didn't get a chance to do it yet but will try to create a thread on this in the upcoming days. If I copied where you wrote "Part 1" and "Part 2" will that link to the story in a new thread or would I need to find the story on CNN and create a new link? (Sorry I am technically challenged)!
 

Mary

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I didn't get a chance to do it yet but will try to create a thread on this in the upcoming days. If I copied where you wrote "Part 1" and "Part 2" will that link to the story in a new thread or would I need to find the story on CNN and create a new link? (Sorry I am technically challenged)!
I think they will link to the story in a new thread. I've seen links in copied portions of posts that worked. (I'm technically challenged too! :confused:)
 

StarChild56

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I do not have much time, must get ready for an MRI but Dr. Kaufman probably saved my life. I am still very ill, he is unraveling my many complex illnesses and adding treatments, meds, etc.
Even my neurologist with a very well known/highly acclaimed health system said I was "lucky" to have Dr. Kaufman as my specialist.