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I need to find a new CFS/ME doctor

Messages
69
Location
USA
I was diagnosed with CFS/ME nearly a year and a half ago. I also participated in an Arizone State study a while back, which clearly demonstrated CFS/ME markers...ultimately intended for future diagnostics. So, the diagnosis seems to have stuck.

Now I would like to make an appointment with one (or more) of the pioneering/invested doctors in the CFS/ME field. Any suggestions? While I live in NJ, I'm at the point that distance is no barrier, if it means even some degree of recovery. Questions: Do any take Medicare? And, would you recommend temporarily relocating...which I'm willing to do.

TIA!
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I also participated in an Arizone State study a while back, which clearly demonstrated CFS/ME markers

Would you mind posting what these markers are and how you tested?

I think it might also depend on the lab results which expert to see. e.g. Dr John Chia focuses on enterovirus-induced CFS, while Dr Montoya focuses more on herpesvirus.
 

Diwi9

Administrator
Messages
1,780
Location
USA
You are physically close to Dr. Levine, who is in NYC (as far as I know). Adding to doctors listed by @Wonkmonk, Dr. Kaufman and Dr. Chheda are at the Center for Complex Diseases in Mountain View, CA. They seem to approach the disease by looking deeply into labs and trying to address all the sequelae first (IBS, POTS, MCAS).
 

Cort

Phoenix Rising Founder
I was diagnosed with CFS/ME nearly a year and a half ago. I also participated in an Arizone State study a while back, which clearly demonstrated CFS/ME markers...ultimately intended for future diagnostics. So, the diagnosis seems to have stuck.

Now I would like to make an appointment with one (or more) of the pioneering/invested doctors in the CFS/ME field. Any suggestions? While I live in NJ, I'm at the point that distance is no barrier, if it means even some degree of recovery. Questions: Do any take Medicare? And, would you recommend temporarily relocating...which I'm willing to do.

TIA!
Hey Tia - can you say anything about that Arizona state University study? (Was that in Tucson?)
 

Cort

Phoenix Rising Founder
There's Ben Natelson in NY who takes a very conservative approach but is involved in research studies.
There's Pocinki - very highly rated - in Baltimore I think -
I've heard good things about Sivieri who is in the same general area.

Baraniuk I think is an MD as well as researcher - he's at Georgetown in DC.

how about phoning up the New Jersey organization - they should have some ideas - http://www.njcfsa.org/
 
Messages
69
Location
USA
Thanks all for your responses. I had to look-up the ASU information...brain fog is getting really bad.

'The study design I created this past Spring was simple: an immunosignature is a snapshot of all your antibodies at the moment you take a blood sample. You send me your blood, I create your personal immunosignature, and I then compare your signature against other people who were diagnosed with either fibromyalgia, ME/CFS, or healthy controls. There are 125,000 different measurements (peptides) that I examine. Out of those 125,000 measurements, only a few are common to a disease. The rest represent all of your previous environmental exposures, illnesses, vaccines, and allergies. Those are independent of your CFS or FM state and are ignored. The few measurements that correlate to your CFS or FM status are compared, person by person, to create the map you see. Your number is next to your dot, and your dot represents where your signature lies relative to everyone else in the study. I made the map as big as I could, but since the CFS group was large and had so many people, you might not see your number, or your number is on top of another number. If you don’t see yours, it’s likely right in the middle of the cluster of magenta dots. The controls tended to cluster near the center, and many people clustered near the control group. That may indicate the severity or duration of your disease, or how many ME/CFS or FM antibodies you have relative to everyone else. Some people who were listed as FM were closer to the CFS group and vice versa. That may indicate some cross-reactivity or lack of specificity of my test. Either way, if this were a diagnostic, you would either get an ‘indeterminate' result, or a dual positive result. I don’t know how to interpret this result in terms of a commercial diagnostic yet, but if I were to present my results to the FDA, I would suggest a blood test that consists of several donations over 3-6 months. The signatures change a little over time, and it moves as your disease progresses or wanes. Those few extra time points would make the diagnostic more precise. A single time-point may be too coarse for accuracy.'
 

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Cort

Phoenix Rising Founder
Thanks all for your responses. I had to look-up the ASU information...brain fog is getting really bad.

'The study design I created this past Spring was simple: an immunosignature is a snapshot of all your antibodies at the moment you take a blood sample. You send me your blood, I create your personal immunosignature, and I then compare your signature against other people who were diagnosed with either fibromyalgia, ME/CFS, or healthy controls. There are 125,000 different measurements (peptides) that I examine. Out of those 125,000 measurements, only a few are common to a disease. The rest represent all of your previous environmental exposures, illnesses, vaccines, and allergies. Those are independent of your CFS or FM state and are ignored. The few measurements that correlate to your CFS or FM status are compared, person by person, to create the map you see. Your number is next to your dot, and your dot represents where your signature lies relative to everyone else in the study. I made the map as big as I could, but since the CFS group was large and had so many people, you might not see your number, or your number is on top of another number. If you don’t see yours, it’s likely right in the middle of the cluster of magenta dots. The controls tended to cluster near the center, and many people clustered near the control group. That may indicate the severity or duration of your disease, or how many ME/CFS or FM antibodies you have relative to everyone else. Some people who were listed as FM were closer to the CFS group and vice versa. That may indicate some cross-reactivity or lack of specificity of my test. Either way, if this were a diagnostic, you would either get an ‘indeterminate' result, or a dual positive result. I don’t know how to interpret this result in terms of a commercial diagnostic yet, but if I were to present my results to the FDA, I would suggest a blood test that consists of several donations over 3-6 months. The signatures change a little over time, and it moves as your disease progresses or wanes. Those few extra time points would make the diagnostic more precise. A single time-point may be too coarse for accuracy.'
Thanks! Good for ASU for looking into this. I think they are working with the Nevada Center
 
Messages
69
Location
USA
Thanks again for the feedback! I will start making phone calls soon. I recently reached out to Dr. Bateman, in Salt Lake City, but they're unfortunately not taking any new patients currently.

First, I saw Dr. Podell and he said, that while my case was the most complex he had ever seen (bet he says that to all his patients ;), he didn't think that I had CFS/ME. At the time, while I did have PEM, it wasn't as bad as it is now. I then saw Dr. Levine and she confirmed that I had CFS/ME and put me on antivirals. Unfortunately, I had a surprisingly very poor experience with her, so now am looking for a new specialist.

I'm not sure what specialist would be best for my case: I have been diagnosed with a whole bunch of auto-immune diseases, including: celiac, hashimotos and recently, addisons...though the I'm still trying to determine the accuracy of the addisons' diagnosis. Hydrocortisone is making me feel worse...though this is not unusual, as most meds make me feel worse; maybe a methylation issue? I do have a hetero MTHFR defect. I have also been diagnosed with dysautonomia, mild vestibular dysfunction and elevated viral/bacterial titers - EBV, lyme, etc. I think some of my conditions are congenital, but didn't become debilitating until about 6-years ago. While the chronic physical exhaustion is new (past 6-years), I've had, in retrospect, cognitive exhaustion since birth. My SP02 levels appear to be fine, but a SPECT demonstrated profuse hypoperfusion, akin to lyme-related encephalopathy. And, other than glutamate, all of my neurotransmitters are very low.

Signed,
Confused
 
Messages
69
Location
USA
There's Ben Natelson in NY who takes a very conservative approach but is involved in research studies.
There's Pocinki - very highly rated - in Baltimore I think -
I've heard good things about Sivieri who is in the same general area.

Baraniuk I think is an MD as well as researcher - he's at Georgetown in DC.

how about phoning up the New Jersey organization - they should have some ideas - http://www.njcfsa.org/

@Cort - Thx for the suggestions. Do you think any of the east coast doctors you suggested are on the same level and have the same resources as the notable Cali docs?