Tuesday, April 24, 2018

Finding a Doctor for ME/CFS

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. That last article I listed (on page 23 of the pdf) on the previous page for family doctors is also a great introduction.

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
-->Theresa Dowel, NP (Nurse Practitioner) – Four Peaks Clinic – Flagstaff, AZ (she studied under Drs. Montoya and Chia)
Dr. Kaufman & Dr. Chheda – Center for Complex Diseases – Mountain View, CA
Dr. Nancy Klimas & other doctors – Institute for Neuro Immune Medicine – two locations in FL
Dr. Susan Levine – NYC
Dr. Jose Montoya & his staff at Stanford in Palo Alto, CA
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.

Canada

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. Bansal – St. Helier University Hospital – Carshalton (may be retiring from clinical practice at the end of 2018 to focus on research)
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
Gottfries Clinic – Mölndal - Sweden

Australia:

Dr. Christabelle Yeoh – Central Coast of NSW
Doctors at CFS Discovery Clinic - Melbourne

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.

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 & 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: http://fmcfsme.com/doctor_database.php (not currently available?)

List of ME/CFS Doctors & 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


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