• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Nancy Klimas Opening ME/CFS Clinic Next Month

Cort

Phoenix Rising Founder
Someone who's seeing Dr. Klimas just sent me a notice that Dr. Klimas is opening a clinic in Miami next month. Dr. Klimas then provided this information. The website should be up next month. It sounds like she hopes it will be much more than just a clinic; she wants a strong research tie-in. She's certainly someone to do it.

Yes the clinic is exciting. My colleague and friend Hannah Olanoff has been getting this project together, and she has a contact email address: info@cfsclinic.com . We expect to open in early Oct ober with some part time people, if it can hold its head up financially we'll get fulltime people in and rev it up.

Its a model clinic, we'll be using a neat electronic medical record designed just for CFS by experts (well an expert) and using the Miami site to train doctors, hopefully we will then open solid good clinics in other towns in the US. From this we will have the clinical trials network, the natural history study, and other important data that we desperately need from the research side, and of course the patients will have access to well trained doctors and a structure that allows other experts to weigh in on tricky cases.

Should the first clinic actually make any money, it will fund a foundation to support the research and underwrite some of the folks who can't afford care. It may be pie in the sky, but I am really psyched!

It will be an out of network clinic, and we will be charging for the visits in cash , handing the patients the filled in forms they need to be reimbursed by their insurance. When ever possible procedures and labs will be billed to the insurance company to keep out of pocket cash payments as low as possible. Sad to say, we need cash to run the clinic since we are starting on a wing and a prayer, so please don't be too upset by the reimbursement plan. Once we are solvent, we will look at other methods.
 

leelaplay

member
Messages
1,576
I just sent an email asking for information on the clinic that can be posted on the forum here. WIll post it when I hear back

islandfinn:)
 

leelaplay

member
Messages
1,576
Dr Klimas' CFS Clinic

Dr Klimas is in the process of opening her CFS Clinic.

CFC_logo_web.jpg




Welcome to the new Chronic Fatigue & Immune Disorders Research and Treatment Center (Chronic Fatigue Center).

STAY TUNED FOR DETAILS ON OPENING DATE AND APPOINTMENT SCHEDULING!

Welcome
The goal of this new clinic it to provide the highest quality medical care to those patients suffering from Chronic Fatigue Syndrome (CFS) and related illnesses. With excellent assessment tools, skilled staff and years of clinical experience provided by Dr. Klimas and her treatment protocols, we are eager to increase the number of patients served here in South Florida and around the country.

Heres how the clinic will work. New patients will visit the clinic for an initial assessment with a Klimas-trained Nurse Practitioner. This comprehensive assessment, lasting up to an hour, will lay the foundation for the creation of a personalized treatment plan. Using results from the assessment, sophisticated testing of blood work and select diagnostic testing, the patient will return approximately one month after the initial visit to discuss implementation of the treatment plan.

Details will follow shortly on our grand opening date and how to make appointments. In the meantime, for more information, email info@cfsclinic.com.

Dr. Nancy, Klimas,

Chief Medical Officer,

NK_photo_adjusted_op_558x643.jpg
 

Christopher

Senior Member
Messages
576
Location
Pennsylvania
New patient initial assessment - No less than $1500 and no more than $3,300 including all possible in-clinic diagnostic tests, one follow-up appointment at the clinic and one phone consultation. Labs are not included in this fee.

Follow up patient appointment - no more than $2,000 including all possible in-clinic diagnostic tests and one additional phone consultation.

Blegh. Another FFC.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
disappointed

I am so very disappointed with the name Chronic Fatigue Center. Can we petition her to change it before her grand opening?
 
K

_Kim_

Guest
nice post islandfinn :)

You really got the hang of the forum features down!

I continue to be impressed with the likes of Nancy Klimas. From the About Us page:

Using her proven methodology and techniques, Dr. Klimas will train doctors to listen to patients and treat this complex illness.

Did you hear that? She is going to train doctors to listen to us!!

And this:
There are three surveys that need to be completed and returned to the clinic PRIOR to your visit. In order to preserve your health and energy, please begin working on these surveys at least a week before your appointment in order to give you enough time to complete them without tiring yourself out.
The three surveys are:
Sleep diary
36 questionnaire
CFS Checklist

And there's more:
What should I bring with me?
If possible, bring any lab work...You might want to bring a sweater as well. It seems to be cool in our office and we don't want you to be cold.

And we get a shout out on the Helpful Links page:
www.aboutmecfs.org
Phoenix Rising, a website of information, articles and blog on ME/CFS

Now for the bad news:
New patient initial assessment - No less than $1500 and no more than $3,300 including all possible in-clinic diagnostic tests, one follow-up appointment at the clinic and one phone consultation. Labs are not included in this fee.

Follow up patient appointment - no more than $2,000 including all possible in-clinic diagnostic tests and one additional phone consultation.
 

leelaplay

member
Messages
1,576
I am so very disappointed with the name Chronic Fatigue Center. Can we petition her to change it before her grand opening?

Me too gracenote. I was so excited I didn't notice details like that, or the fee schedule that Christopher found. What I had read was that they will have government reimbursements set up in the future and that they are fundraising to pay the costs of people who can't afford them.

I'm going to email info@cfsclinic.com right now to express my delight at the clinic being on it's way, but puzzlement about the name choice.

islandfinn:)

christopher - what is FCC?
 

leelaplay

member
Messages
1,576
You really got the hang of the forum features down!

Thanks for noticing Kim - it only took me about 1 1/2 months!

I continue to be impressed with the likes of Nancy Klimas. From the About Us page:

Oh - I'm so glad you were able to dig tonight and find some more of the good stuff. Now all I need is a rich boyfriend to whisk me (and a maid/chef) to Florida to attend the clinic and maybe stay a bit for the sun and warmth, maybe for the winter?

if:)
 

Christopher

Senior Member
Messages
576
Location
Pennsylvania
christopher - what is FCC?

finn,

FFC stands for the Fibromyalgia and Fatigue Centers. I'm very biased against them, but they do provide good services (for those who can afford it). Tietelbaum is now associated with them, and I just find that they are too pushy in trying to sell supplements and IV's. They don't take insurance and charge similar rates (actually FFC is a bit cheaper it seems).

I get very angry when people try to make a profit off us, that's all.
 

leelaplay

member
Messages
1,576
finn,

FFC stands for the Fibromyalgia and Fatigue Centers. I'm very biased against them, but they do provide good services (for those who can afford it). Tietelbaum is now associated with them, and I just find that they are too pushy in trying to sell supplements and IV's. They don't take insurance and charge similar rates (actually FFC is a bit cheaper it seems).

I get very angry when people try to make a profit off us, that's all.

Thanks Christopher. Agreed re FCC. I get angry too - having donated most of my life's savings to other people's as I tried everything possible to get better.

Well - let's see what she does. I like the foundation idea. And maybe she's not making a huge profit - maybe that's what the battery of tests, overhead and salaries cost.

She seems such a straight arrow, a rare voice of reason in all of this, and a caring professional. I'm willingly to suspend judgement.

if:)
 
K

_Kim_

Guest
Okay, I've gone with islandfinn's full out fantasy. What if I did fly down to Miami this winter? I could do this. I've got a client with an empty condo there that he can't sell. He'd let me stay there. And just to get a feel for the idea, I put the address of the clinic into Google Earth. I still think it's magic how this works, but there it is, a picture of the building that the clinic will be in, with a sign out front that says, "Space Available"
 

Attachments

  • Chronic Fatigue Center.jpg
    Chronic Fatigue Center.jpg
    45.7 KB · Views: 79

Kati

Patient in training
Messages
5,497
Very interesting. I am grateful there is another place for patients to get assessed and treated, and for doctors to be trained. I have full trust in Dr Klimas and my gut feeling is she is not in for the money.
Unfortunately for PWC that have been out of work for so many months or years or decades, it is hard to imagine how you can pay that kind of fee unless you remortgage your home- if at all possible.

I wonder if the fee is jacked up for out of country patients???
 

Kati

Patient in training
Messages
5,497
Wild Daisy you'd be surprised to hear about medical fees being double or triple for out of country care.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Initial appointment is with a nurse. I'm not sure how many people with ME/CFS will travel to another country to see a nurse.
 

shiso

Senior Member
Messages
159
I read something somewhere (I know, very helpful - but I'm too tired to find the quote) where Dr. Klimas is in effect apologetic about the high costs but explained that she just doesn't have the startup funding (e.g. privately or from the government) to run a new kind of clinic along the lines she envisions. I think the hope is to stay afloat long enough to keep going, as a start.

Point being, I think the intent is to create a place that serves CFS patients, where there is a lack of such clinics in the country (and around the world). I think Dr. Klimas has impeccable integrity from everything I've read about her (just watch her in the CFSAC meetings, or read her NYT interview) and honestly don't think a profit motive is the driver of this at all.
 

calzy

Senior Member
Messages
113
Location
Naples Florida
She is not in it for $

I am a patient of Dr. Klimas, if she is charging these fees its not for profit, I can assure you. She has a waiting list of 400! I think she got furstrated and is going this route. Until CFS becomes a mainstream illness, that regular Docs can treat, this is a lifesaver for suffering people. Cheney charges $500 an hour. I know her, her heart is in the right place. Simplify the flow of the practice ie: no insurance, and let her get off the ground. Im sure she will find a way at some point to help us who have exhausted our life savings...thank you Dr. Cheney...lol