Dreaming Big: The Bateman-Horne ME/CFS and Fibromyalgia Center Makes Good

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Whatever you can do, or dream you can do, begin it. Boldness has genius, power, and magic in it. Begin it now. W.H. Murray

Paying the Price

Our chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) experts are leaders, every one of them. As Dr. Bateman has noted everyone in this field has had to give something up - whether it was money, acknowledgement from their peers, or just an easy path - to work in this field.

[fright]
ManDesert.jpg
[/fright]This field is not for people who are just committed to being good doctors, as a laudable a goal as that is. It takes more than that. You have to be the kind of person who, even when your colleagues are brushing your patients off, even when you have to spend hours treating them (and forgoing more money), even when the medical profession is largely ignoring you and them, is not willing to give up on sick people.

That cost is the rub. Anyone can do good when you're getting pats on the back, but what about doing it when it really costs you something. Thirty years ago Dr. Peterson was vilified in Incline Village for bringing attention to really sick patients who'd started showing up in his office. It wasn't just that his peers didn't get what he was doing; there were people in Incline Village who really didn't want him there. His commitment to his patients was such, though, that he's stuck around through thick and thin for over thirty years now.

That's commitment.

An Audacious Goal

Dr. Bateman has a similar commitment. She'd run the numbers. She knew there were about 75,000 ME/CFS/ FM patients in Utah, and that she was the only dedicated ME/CFS/FM doctor in the state. She knew she'd seen about 1500 people over the past ten years, or about 2% of the ME/CFS/FM patients in her state. That left about 73,500 people in Utah who'd had to deal with their illness without seeing a specialist.

[fleft]
Taking_Chances.jpg
[/fleft]She realized that making a little dent in the overall problem is about all an ME/CFS/FM expert can do by his or herself. So she stepped way out of her comfort zone, threw her cap over the wall, and declared she was going to build a Center for ME/CFS and FM in the state of Utah. A major Center for chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) - one that worked financially - and one that had the resources to take on the kind of projects the field needs.

She could have fallen flat on her face, and the truth be told, she didn’t get a lot of publicity. But when someone like Dr. Bateman speaks people do listen. She's earned that over the years, and there's something about making a public commitment that moves people

“Until one is committed, there is hesitancy, the chance to draw back. Concerning all acts of initiative (and creation), there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too.

All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one's favor all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamed would have come his way.

Whatever you can do, or dream you can do, begin it. Boldness has genius, power, and magic in it. Begin it now."

W.H. Murray
So it began and providence did move in the form of Suzanne Vernon coming on board, and over 1 million dollars - 2 1/2 times the amount they'd originally hoped for - being raised for the Bateman Horne Center. It will open in its new digs on August 15th.

That is a big win not just for the ME/CFS/FM patients in Utah, but for the ME/CFS and FM community overall. It some ways it's the biggest win we've seen in a quite a while. The Salt Lake City metropolitan area isn't exactly a major media market. In fact, it's not a major anything. With just over 1 million people it's the 48th largest metropolitan area in the country.

[fright][/fright]For that community to pour over $1 million dollars in to support an ME/CFS/FM Center says something.
It should tell the NIH, for one thing - which is currently deciding whether to fund ME/CFS consortiums - something about the demand and need out there.

Dreaming Bigger

If you can build a $1.2 million Center in Salt Lake City why not a $10 million center in Los Angeles or New York? Granted there aren't many Bateman/Vernon teams out there, but the last few years indicate that the money is out there for credible projects, and that people who enter this field are entering a growth field.

Out of the blue both Dr. Montoya and Dr. Enlander got huge donations without asking for them. Ron Davis and the Open Medicine Foundation have raised over $4 million for the severely ill project. Nancy Klimas has been embraced by Nova Southeastern University and Jared Younger's program is taking off at the University of Alabama at Birmingham. (He just got a new grant). Dr. Kogelnik's big dream of a vast study examining patients under the care of ME/CFS experts became a reality at the CDC's multisite study.

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Breakthrough-new-realm.jpg
[/fright]These successes suggest that it's time to start dreaming really big. A year ago Dr Bateman asserted that all of us should start making a shift in what we consider possible; to not let the resigned attitudes of our past determine our actions, but to be committed to an effective and brighter future – and to produce it.

In fact, it may be necessary to start dreaming bigger if we want to optimize the opportunities that may be coming our way. We need new ME/CFS experts to enter the field - not just to treat patients - put to keep up with what will hopefully be a greatly accelerated ME/CFS research field. In their response to the request for information from the NIH Dr. Bateman and Suzanne Vernon emphasized that the research field cannot grow without the ME/CFS expert practitioner field growing as well.

Congratulations to Dr. Bateman for taking a stand that the time had come for an ME/CFS/FM Center in Salt Lake City, to Suzanne Vernon for joining her in that vision, and to everyone who supported them. It's a very good day for ME/CFS/FM.

Here's to bold ventures and a brighter future.
 
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fdotx

Well-Known Member
This is great, especially when only one state away. I hope "treatment center" means they look into various causes and multiple treatments unlike some specialists who concentrate on only one cause/treatment. Thanks for the heads up Cort.
 

Equipoise

Member
Thanks for the great article, Cort! Things are really happening at the BHC lately. it's really exciting.
Just as an aside, Utah now has 3 million people and is 33rd in the ranking of population.
Nevertheless, we are really privileged and fortunate to have the BHC here!
 
"To not let the resigned attitudes of our past determine our actions". Yes, for all of us who have been sick for decades, and all of the many disappointments we have had to overcome, this having hope once again is a challenge, but we can never give up the hope. We must keep ourselves open to seeing the realities of what is happening now, and take our eyes off the past. Take ahold of all of the great new research and good , good people who have stood by us, in spite of the difficulties they have had in doing so. And know that things are truly beginning to change. Thank you, Cort, for great reporting.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks Cort! Working with Dr B is a dream come true for me - an amazing doctor and a compassionate human being. Very exciting times ahead for our ME/CFS/FM communities!
Thanks.

Congratulations again on such a great win for the ME/CFS and FM Communities.

Looking forward to talking more and hearing more about the research side of the Bateman-Horne Center including the exciting Unutmaz study. :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks for the great article, Cort! Things are really happening at the BHC lately. it's really exciting.
Just as an aside, Utah now has 3 million people and is 33rd in the ranking of population.
Nevertheless, we are really privileged and fortunate to have the BHC here!
:)

Good for Utah... I don't know if bigger is better - I think a million is large enough! - but I'm afraid that as of 2015 the Salt Lake City metropolitan area is still ranked 48th. :).. You are ahead of the Grand Rapids, Wyoming met area though...:wacky:

https://en.wikipedia.org/wiki/List_of_Metropolitan_Statistical_Areas

Hartford-West Hartford-East Hartford, CT Metropolitan Statistical Area
1,211,324
1,212,381
−0.09%​
Hartford-West Hartford, CT Combined Statistical Area
48​
Salt Lake City, UT Metropolitan Statistical Area
1,170,266
1,087,873
+7.57%​
Salt Lake City-Provo-Orem, UT Combined Statistical Area
49​
Birmingham-Hoover, AL Metropolitan Statistical Area
1,145,647
1,128,047
+1.56%​
Birmingham-Hoover-Talladega, AL Combined Statistical Area
50​
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort,
Do you know of any credible inpatient physical rehab centers for ME?
Placex where people can go and stay? I don't know...I haven't heard of any place...Some people might know better than me ????
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
This is great, especially when only one state away. I hope "treatment center" means they look into various causes and multiple treatments unlike some specialists who concentrate on only one cause/treatment. Thanks for the heads up Cort.
I'm sure they will. From what I gather they are engaged in immune, genetic and even metabolomics studies right now..

Suzanne Vernon showed great versatility when she was at the SMCI and Dr. Bateman is like Ron Davis; it's personal for her - her sister had ME/CFS/FM and was treated horribly by the medical profession - the Center is named after her.
 

Carollynn

Active Member
Hey Southern California! Northern California has centers of research that will more easily become centers of treatment. How can we have some great universities with no emphasis on this emerging field? I write for the researcher reading your blog, Cort. SOS!!!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Agreed. What the heck is going on in So Cal? There's gotta be a budding COE down there some where.

If Salt Lake can do - and No Cal certainly will - So Cal (where I grew up) certainly can...


Hey Southern California! Northern California has centers of research that will more easily become centers of treatment. How can we have some great universities with no emphasis on this emerging field? I write for the researcher reading your blog, Cort. SOS!!!
 

Equipoise

Member
:)

Good for Utah... I don't know if bigger is better - I think a million is large enough! - but I'm afraid that as of 2015 the Salt Lake City metropolitan area is still ranked 48th. :).. You are ahead of the Grand Rapids, Wyoming met area though...:wacky:

https://en.wikipedia.org/wiki/List_of_Metropolitan_Statistical_Areas

Hartford-West Hartford-East Hartford, CT Metropolitan Statistical Area
1,211,324
1,212,381
−0.09%​
Hartford-West Hartford, CT Combined Statistical Area
48​
Salt Lake City, UT Metropolitan Statistical Area
1,170,266
1,087,873
+7.57%​
Salt Lake City-Provo-Orem, UT Combined Statistical Area
49​
Birmingham-Hoover, AL Metropolitan Statistical Area
1,145,647
1,128,047
+1.56%​
Birmingham-Hoover-Talladega, AL Combined Statistical Area
50​
Gah! Sorry, Cort, major brain fog. You were talking about SLC, not the whole state. My bad!
 

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