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@sita

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

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Replies to "Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune..."

@sita Thanks for the Phoenix Rising info. I am familiar with this group, as well as the S4ME.info website.

Your primary care doctor can diagnose ME/CFS. The diagnostic criteria are on the CDC website. ME/CFS is no longer a diagnosis of exclusion.
https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
In summary, there are 3 required symptoms + 1 of 2 optional symptoms.

Required Symptoms:
1 substantial impairment in activity that lasts six months or more and is accompanied by fatigue
2 post-exertional malaise (PEM)
3 unrefreshing sleep

Plus at least 1 of 2 optional symptoms:
1 cognitive impairment or
2 orthostatic intolerance

Thanks so much for this information. Unfortunately getting my primary or any other doctor in NM to provide consistent care, is a challenge in NM. Getting a diagnosis seems impossible! I would so hope for another diagnosis rather than ME/CFS. ME/CFS is a terrible and terrifying diagnosis and disease to live with! My heart goes out to those who deal with this disease daily!

Sita, I lived in Montana and got no help there with getting a ME diagnosis. My PCP and a rheumatogist tried to help, but the neuros were awful. I went to Salt Lake City, Utah (930 miles round trip from where I lived in Montana) had an EMG/NCT that was abnormal, a diagnosis of Myasthenia Gravis ..then neuor in MT disputed diagnosis. I understand there is a clinic in Salt Lake, Bateman Horne Ctr that treats ME. Self-pay of course.Stanford University in California has over a year waiting list and the cost is $8,000.00. I was fortunate to get diagnosed when I moved back to VA, but my neuro is not an ME specialist, does prescribe Mestinon, and some support. My PCP doesn't know how to help me. Most of us cannot afford to go to the ME ctrs or even travel due to this illness. .I'm with you..another known,, accepted diagnosis would give us support and treatments and hope! I wish you could find a dr to help you. Sendign you support and good wishes.

Sita..I understand Mayo is now treating ME. I read about this online. I do a lot of research.

Thanks for your response! I had a friend who was seen at Mayo for a second opinion with cancer and she does have Medicare. I will have to check on whether she had to pay out of pocket.

I need an accurate diagnosis before I look at treatment.

Thanks Elik!

@sita — in addition to the helpful information that @webdog and @elik have provided, here is a link you may use to request an appointment at Mayo Clinic, if you'd like to be seen: http://mayocl.in/1mtmR63

Thanks so much.  I really feel like I need to have a doctor’s name or a type of specialist before I go. I am having B12 deficiency symptoms including nausea, gagging, neurological symptoms like foot tingling, weakness in legs, dizziness, fatigue, vision blurring, paleness, memory issues.I have had three stomach surgeries including small bowel resectioning for adhesions and taken PPIs like Prilosec long term.  I really think absorption is a factor.  I don’t want to waste a Mayo visit, and I don’t know that just a general Mayo doc could diagnose me.Thanks for being so helpful, any thoughts are welcome.

Any doctor should be able to test for and treat B12 deficiency.

As an aside, 3 years ago, I was in a B12+methylfolate ME/CFS study for those with MTHFR gene mutations. I saw no benefit.

The Open Medicine Foundation study is still ongoing. I don't know if they are recruiting, but could be worth looking into.
https://www.omf.ngo/current-studies/

Unfortunately, many people are misdiagnosed with and without B12 deficiencies. In my case, I was supplementing orally prior to being tested, which skewed my results.  Although I have the B12 deficiency symptoms, those same symptoms are also found in ME/CFS. There are also other deficiencies that may cause those symptoms. I personally have been waiting over three weeks for my doctor to put into process a complex nutritional evaluation.  This is, by the way, a Concierge doctor that I pay additionally for, since primary care doctors are so overwhelmed and scarce whereI live.  I don’t have a clear diagnosis and am not sure how or when I will get one. I know that I am not unique in this. I may check into the study that you cited. Thanks very much!