Finding a Doctor

I have had a LOT of requests for this information recently, on how to find a doctor to help with treatments and which doctors are experts in ME/CFS. I've been working on a book, Effective Treatments for ME/CFS: Our Experiences (which will hopefully be published this fall), which includes a section on finding doctors. What follows is from my first draft, but I think it is fairly complete - I've shared this with people in different parts of the world and gotten feedback and added to my lists. You can read more about Effective Treatments for ME/CFS here on my blog at the link.

What follows is excerpted from my upcoming book, Effective Treatments for ME/CFS: Our Experiences (© 2018 Suzan L. Jackson). Please don't reprint it without permission, though feel free to share this post with those looking for a doctor. And let me know in the comments if you know of other doctors with expertise in treating ME/CFS that I have not included here.

" You will see that there are some treatments discussed in this book (and on this blog) that you can try on your own, things involving diet, supplements, or other do-it-yourself approaches. However, for us, the most significant improvements have required the help of a doctor – either for prescription medication, expertise, labwork, or supplements that have to be ordered through a compounding pharmacy (which also require a prescription). The very best situation is the kind that we are now in: we travel about once a year to see one of the top ME/CFS experts (about a 2-hour train ride away for us) who helps us with specialized treatments, and we also have a local primary care/family doctor who understands the basics about ME/CFS and is willing to help us with treatments she is familiar with and also follow us for basic medical care.

Primary Care Doctor

Finding a local doctor who is willing to help you can sometimes be challenging, but it is well worth the effort. At the start of my illness, it took me a full year of seeing various doctors to find a new primary care physician who knew about ME/CFS – as I explained in Chapter 1, she is actually the first doctor who immediately recognized that I had ME/CFS, after a year of other doctors saying, “I have no idea what’s wrong with you.”

However, you don’t necessarily need a local doctor like mine who is already familiar with ME/CFS – what you need most is an open-minded doctor who is willing to listen and learn alongside you. Our pediatrician was a great example of that. She knew nothing about ME/CFS before my sons got sick, except that I had it. When they became ill, she gladly read all the information I gave her about the disease, listened to the recommendations from a top expert (now retired) we went to see, and called another expert to ask questions about a treatment we wanted to try for the boys. Over time, she became something of a local expert herself, just through her willingness to listen and learn. We’ve all run into arrogant doctors who dismiss you if they’re not familiar with your condition. If you encounter one of those, don’t go back. 

You need a doctor whose attitude is, “I don’t know much about ME/CFS, but I am willing to learn and help you as best I can.” They are out there – it just may take you some trial and error to find one. You can do some upfront screening by calling potential primary care doctors and asking if they treat other patients with ME/CFS. 

With a complicated, long-term illness like ME/CFS, it is very important to have a good relationship with your doctor, to feel like you can talk openly to him or her and to know that he or she will listen to you. If your doctor is unfamiliar with ME/CFS, share the CDC and Solve ME/CFS websites with him or her as a starting point. 

ME/CFS Top Experts

In addition to having a local doctor – both for certain ME/CFS treatments and to follow your general health and well-being and take care of other medical problems – you should consider seeing a doctor who has specific expertise in ME/CFS and is up-to-date on the latest research. There aren’t a lot of these around, but it is worth traveling to see one of them, if you can manage it. They are all accustomed to working with patients long-distance, via e-mail and phone, after an initial in-person visit and with intermittent in-person follow-up visits.

The following are considered the top experts in ME/CFS – they may not all be accepting new patients all the time, but it’s worth a phone call to ask. Sometimes, a doctor whose practice is full may agree to take on a new patient if they fit into a research study the doctor is currently conducting or participating in:

United States:

Dr. Lucinda Bateman and staff – Bateman Horne Center -  UT

Dr. John Chia – Torrance, CA (doesn't usually see patients under 16)
Theresa Dowel, NP (Nurse Practitioner) – Four Peaks Clinic – Flagstaff, AZ (she studied under Drs. Montoya and Chia)
Dr. Nathan Holladay - Salt Lake City, Utah - trained at the Bateman Horne Center  

Dr. Kaufman and Dr. Chheda – Center for Complex Diseases – Mountain View, CA

Dr. Nancy Klimas and other doctors – Institute for Neuro Immune Medicine – two locations in FL (don't usually see patients under 18)

Dr. Susan Levine – NYC

Dr. Hector Bonilla and staff at Stanford in Palo Alto, CA (multiple doctors and staff - may have a waiting list)

Dr. Ben Natelson - NYC

Dr. Daniel Peterson – NV

Dr. Peter Rowe – Johns Hopkins, MD (pediatric – hasn’t been able to accept new patients for many years but you can sometimes get in as part of a study, and he is happy to talk to your doctor by phone or e-mail even if you are not a patient)

Dr. Kogelink and staff at Open Medicine Institute in northern CA

All of the above doctors work closely together to coordinate on the latest treatments for patients and participate in ground-breaking research, so you will get similar treatment approaches from all of them. All have been working in this field for a long time and have treated many ME/CFS patients.


Dr. Ian Andrew Hyams – West Vancouver

Dr. Byron Hyde – Ottawa

United Kingdom:

(Note that it is harder to get real medical treatments for ME/CFS in the UK currently because the NHS prescribes exercise and therapy as the only approved “treatments” for ME/CFS; however, the NHS is currently (finally!) revising these treatment guidelines since the faulty research they were based on has been debunked. So, hopefully, things will improve soon for UK patients, but for now you need to go outside the NHS and/or advocate even harder for yourself to see specialists, as described in the treatment chapters, to treat one aspect of ME/CFS. Some of these doctors work both within NHS and in private practice – you need to see them outside the NHS for them to be able to offer real medical treatments for ME/CFS.)

Dr. Sarah Myhill – Knighton

Dr. Vinod Patel - Warwickshire

Dr. Nigel Speight – Durham (pediatrics)

Dr. William Weir – London

Doctors at Breakspear Medical Clinic - Hertfordshire

Other Europe:

Dr. Kenny De Meirleir – Brussels, Belgium (currently working in the U.S. at the Whittemore-Peterson Institute)

Gottfries Clinic – Mรถlndal - Sweden (a patient told me this clinic has recently closed)


Dr. Christabelle Yeoh – Central Coast of NSW

New Zealand:

Dr. Rosamund Vallings – Howick, Auckland

Other Doctors Who Treat ME/CFS

These doctors are sort of a second-tier of experts. They are not personally involved in the research or with other cooperative efforts in the field, but feedback from patients has indicated that they know how to treat many aspects of ME/CFS effectively.

United States:

  • Dr. Dale Guyer – The Guyer Institute – Indianapolis, IN (I’ve heard of him from other patients but don’t know anyone personally who has seen him for ME/CFS)
  • The Holtorf Clinic - multiple locations, including Southern CA, Atlanta, UT, and Philadelphia. Also treats other related conditions, including Lyme and other tick infections, thyroid and other hormone dysfunction, and fibromylagia. Have heard good experiences from patients.
  • Dr. William Spurlock - Dallas, TX (note: you may see that Dr. Spurlock has been disciplined by the Texas Medical Board for ordering “medically unnecessary tests” and using “medically unproven” treatments for ME/CFS – ALL ME/CFS doctors could be said to do this, since there are no FDA-approved treatments for ME/CFS currently and treating it effectively requires ordering tests and using treatments that are officially unproven for the condition. I know that he uses many of the same treatments as the top experts listed above, and I personally know of patients who’ve improved with treatment from him – even one young woman who fully recovered.)
  • Dr. David Systrom - Brigham and Young Hospital - Massachusetts - focuses mainly on treating OI and exercise intolerance - very knowledgeable in those areas
  • Dr. Amy Yasko – Maine (her expertise is broader than ME/CFS but the treatments she focuses on are applicable to ME/CFS)

For all locations, check these doctor databases/lists, keeping in mind that the level of expertise of these doctors might vary widely, but they all say they treat ME/CFS – some may specialize more in fibromyalgia, so read their information and call with questions for any potential doctors you are considering.

Doctor Database: (not currently available?)

List of ME/CFS Doctors and Clinics – top experts and second-tier ME/CFS doctors are mixed together on this list (mostly US and Canada):

Chronic Fatigue Syndrome: A Roadmap for testing and Treatment (scroll to the end of the document for a list of ME/CFS Doctors and Clinics:

UK – List of Physicians Trained to Treat ME/CFS from Dr. Myhill’s website:

The Australian ME/CFS Good Doctors List


ME_patient said...

Consider adding doctors from Hunter Hopkins located in Charlotte North Carolina. I see Dr, Black and I know she actively works in studies related to the ME/CFS. DR. Lapp originally founded Hunter Hopkins.

Sue Jackson said...

Yes, I considered including Hunter-Hopkins on this list, and I am very familiar with Dr. Lapp's excellent reputation and long experience - he was one of the original doctors involved in the Incline Village outbreak in the 80's that finally spurred the CDC to recognize this illness.

However, the center and Dr. Lapp and Dr. Black are not included here because I heard feedback from many of their patients that they don't actually offer much in the way of real treatments, the way the other top doctors on this list do. Many patients have told me that they are compassionate and understanding and spend lots of time with their patients...but that they just don't offer much in the way of treatments, such as those listed here. Nor do they seem to be involved in keeping up with the latest breakthroughs or working closely with the other top docs.

So, that's why I didn't include them...though now I am thinking that perhaps I could list them under the "Other Doctors" secondary category.

If your experience has been different, and they have offered the kinds of treatments under my ME/CFS Treatments tab on this blog, then PLEASE do let me know - it would be wonderful for those in the southeast to have another option! We need all the help we can get :)

Thanks so much for taking the time to leave a comment -


Unknown said...

Are you able to disclose who you use as a doctor? I live in PA and am looking for someone. Thank you! Dyanne

Sue Jackson said...

Sure, Dyanne - I thought I mentioned in the post, but I guess I didn't. My son and I see Dr. Susan Levine in NYC as our ME/CFS specialist. She's on the list above and is one of the top ME/CFS experts in the world. Easy to get into and can help with lots of different treatments. And we also have a local family doctor, as described above, who at least "gets" ME/CFS, so we are lucky in that respect! My son also has a Lyme specialist.

Hope that helps!


Unknown said...

Thank you, have you heard any feedback about Holtrof?

Sue Jackson said...

Not the PA location specifically. I know a few people who went to the original Holtorf clinic in CA and had good experiences.

Just as important, the information on their website is very comprehensive and accurate - which is a big deal with our crazy illness! They at least sound like they know what they are doing - worth a try. And they certainly seem to know enough for you to bring them info about specific treatments (like from this blog :) ) and they should know about them or at least be able to understand them.


Sue Jackson said...

P.S. I would definitely pick Dr. Levine in NYC over Holtorf - she is one of the top ME/CFS experts in the world and luckily, very accessible! That's why she's on the list of experts and Holtorf is on the secondary list.

Unknown said...

I'll try Dr. Levin. Your blog has been very helpful, thank you, Dyanne.

Sue Jackson said...

Great! She is excellent. She's not a big talker, though, so be sure to ask any questions you have or let her know if you want to know more about something. She will start with a whole slew of tests (using Quest or LabCorp and drawn in her office) to check immune function and other common culprits and check for any infections lurking behind the scenes (very common for us). She really knows her stuff.

Please tell her I sent you.

BTW, are you in Eastern PA? I am in northern DE (very close to the PA border) and run a local/regional support group - we have lots of members in nearby PA. Let me know if you are nearby and want to be added!

And let me know how things go with Dr. Levine. It can take a lot of trial and error (and a lot of patience and pwersistence) to find the combo of treatments that works best for each person, but she is an excellent guide, and it is worth the effort!


Unknown said...

Thank you again, I sent you an email.

Sue Jackson said...

I saw it and replied!

Unknown said...

I can't find your reply! I'll try messaging you!

Sue Jackson said...

Ah, yes...I see now that I received an error message - your e-mail address (a very odd long string of numbers & outlook) was returned as invalid. It might be an Outlook issue - I've had problems before when my husband tries to e-mail from Outlook. If you have another e-mail option, like a free gmail acct or something, use that. Otherwise, you could message me on Twitter @livewithmecfs or on my Facebook page for this blog:


Gloria said...

Thank you for this .I have been trying for 14 yrs to get help and I do believe that your information is on the mark. It makes me feel better, because every Dr. in Las Vegas and I have been to at least 13 of them has no clue, and the only thing they want to give me is antidepressants.Las Vegas is as far as I can go, so if you know a dr. In Las Vegas or Pahrump nv. Please let me know.

Sue Jackson said...

Hi, Gloria -

Glad you found this information helpful. All the ME/CFS doctors I know of are listed in this post. I know you say you can't leave Las Vegas, but I encourage you to ask a friend or family member to help you. You are in the wonderful position of having multiple top ME/CFS experts within a day's driving distance - very few of us can say that!!

Dr. Daniel Peterson is right there in NV, where he has treated patients for ME/CFS and researched the disease since the Incline Village outbreak in the 80's. Even closer to you, in the LA-area, are Dr. John Chia and the Holtorf Clinic. All of these are listed in this post and are about a 5-hour drive from Vegas - you could lie down in the backseat while a friend or family member helps with the driving. It is life-changing to see one of these top experts.

This other page on my blog on Effective Treatments will give you some idea of the sorts of treatments that the top experts can provide for you. Some things in that post you can try on your own, some you can try with the help of a primary care doctor who is willing to listen and learn. And for some treatments, you really need to see one of the ME/CFS experts - like testing for and treating underlying infections, which is a huge issue for all of us with ME/CFS that we are usually unaware of.

Good luck with both doctors and treatments - I hope you are able to get some help.