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.
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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
Hello Sue, I just discovered your blog today and I am overwhelmed by your wealth of knowledge and generosity. Thank you so much, I shall go through everything to see what I can add to my meagre ME treatment plan (Perrin Technique treatments and naturopathic prescriptions).
ReplyDeleteI wanted to mention that Dr. Bansal, one of the UK doctors you listed, hss indeed retired. I was referred by my GP to Dr. Bansal's clinic at Epsom St. Helier Hospital in February 2020 and finally received a letter from the 'clinic' 3 months later. The 'clinic' is now a part-time service (because all the staff there work part time... how very unhelpful) and it offers only Cognitive Behavioural Therapy and Graded Exercise Therapy. After another 5 months of waitlisting I was put on a 90-minute zoom call with around 20 other ME patients and guided through a powerpoint presentation on energy levels and pacing. Exhausting. We were all then offered to sign up for either CBT or GET or a 6-week (both had 12-month waiting lists) in learning to plan, implement and master an activity plan (6-month waiting list) - all via zoom due to the covid pandemic. If one didn't sign up for one of these options a letter would be sent back to our GP stating that we had declined treatment for ME. I chose option 3 as I need to be seen as compliant in order to keep income support payments, but what Dr. Bansal's former clinic now offers is quite clearly not going to help anyone with ME.
Kind regards
Anne