Finding a Doctor Who Cares
Finding a doctor who truly understands CFS, fibromyalgia, ME, or Long COVID (or even just one who takes the time to listen and care) can feel overwhelming. This article makes the search easier by sharing multiple referral lists of healthcare providers who are more likely to be able to help. With more than 5,000 practitioners to choose from, it’s an excellent starting point on your journey toward healing.
The Challenge of Getting Care for These Conditions
Most healthcare providers receive little to no formal training on these illnesses, and the gap starts with insurance coverage. Because many insurers don’t fully cover treatment, patients are often hesitant to seek help. Meanwhile, with no expensive medications for the conditions, nobody’s paying to teach practitioners about them.
The result feels like a vicious cycle: a system that, intentionally or not, creates the impression that these illnesses aren’t real, while those who suffer struggle to find the care they need.
So, most CFS/FMS/LC specialists, unless they work for institutions that profit from the testing, need to drop their insurance participation because insurers often won’t pay them for the time, testing and treatment needed in CFS/FMS/LC.
At the same time, many well-meaning doctors are worn down by a healthcare system that gives them only a few minutes with each patient. Overwhelmed and burned out, they may default to the easier—yet harmful—response of dismissing your symptoms as "all in your head," even though they don’t intend to cause harm.
What People with CFS/FMS Deserve
Those living with CFS and FMS need, and deserve, healthcare providers who rise above the usual barriers. Practitioners who:
- Seek specialized training in these conditions even when insurance coverage is limited, and/or
- At least give patients the time and attention they need while listening carefully, staying open to emerging treatments, and continuing to work with insurance whenever possible.
Below you’ll find five practitioner referral lists featuring more than 5,000 qualified healthcare providers who meet one or both standards. If you or someone you love is navigating CFS or FMS, these resources are an excellent place to start.
Five Excellent Practitioner Referral Lists
A few important notes: I don’t personally know most of the physicians on these lists, so I can’t vouch for each one. Some may have retired or moved since their contact details were published, and not all will have specific training in CFS or FMS. That said, these practitioners are still far more likely than most doctors to acknowledge that your health challenges are real and to approach your care with understanding and compassion.
1. CFS/Fibromyalgia Practitioner Referral List
These providers have completed several hours of specialized training in my research-based S.H.I.N.E.® Protocol for treating CFS and fibromyalgia.
2. Practitioners Trained by Neil Nathan, MD
In my opinion, Dr. Neil Nathan, the best-selling author of TOXIC, is one of the most knowledgeable experts in this field. He has exceptional expertise in mold toxicity, chemical sensitivities, and the treatment of underlying infections. Although retired and no longer writing prescriptions, he still offers medical consultations by phone, providing valuable guidance for both patients and their own physicians. I especially recommend him for complex or hard-to-treat cases. This is a list of practitioners he has trained.
3. Functional Medicine Practitioners
The Institute for Functional Medicine maintains a worldwide directory of more than 3,000 holistic practitioners. Functional medicine doctors are typically much more familiar with conditions like CFS and fibromyalgia and with integrative approaches to treatment.
The American Association of Naturopathic Physicians provides a national directory of licensed Naturopathic Doctors (NDs). Just as a Ph.D. title doesn’t automatically qualify someone to perform surgery, the term "naturopath" can describe a wide range of training. For complex conditions such as CFS/FMS, it’s best to seek a licensed ND, who, depending on your state, may be able to prescribe medications such as thyroid hormone or certain anti-infectious agents.
5. [Details for the fifth resource follow in the next section.]
Together, these referral lists feature more than 4,000 healthcare practitioners who are far more likely than most doctors to understand CFS, FMS, ME, and Long COVID—or at least some of the different components that make up these conditions.
Keep in mind, though, that many of these providers may not accept insurance, so be sure to confirm coverage before scheduling an appointment.
"Clinicians Who Care" Referral List
The fifth resource is the Clinicians Who Care referral list, an inspiring project created by Dr. Bayo Curry-Winchell, MD, MS, also known simply as “Dr. Bayo.”
Recognizing how hard it can be to find doctors who truly listen and keep an open mind, Dr. Bayo invites patients to submit the names of clinicians who have genuinely heard their concerns and helped them move forward.
As of this writing, the list features more than 1,300 recommended practitioners. Many appear to be traditional physicians who still accept insurance. Yet, according to their patients, they consistently take the time to listen and remain open to new ideas. The heartfelt comments from those they’ve treated speak volumes.
This is a new resource for me as well. So if you explore it, I’d love to hear your feedback.
6 Tips for Getting the Most from Doctor Visits
Does this scenario sound familiar?You go to a physician and say that you have fibromyalgia. The doctor looks at you quizzically and asks, "Fibro Malaysia?" You begin listing your first dozen symptoms. By the third symptom, the doctor’s eyes glaze over, and they start anxiously looking at the door trying to figure out how to escape. Sometimes even implying that because they don’t know what’s wrong with you, you must be crazy !
An all-too-common experience with these conditions…
I’m going to start by noting that gaslighting is never acceptable. By that I mean when your physician implies to you or your family member that they can’t figure out what is wrong with you , so you must be a bit crazy. At that point, it is reasonable to note to the practitioner that gaslighting is considered abusive and unacceptable. If it continues, simply (and calmly – otherwise they will just blow you off) note that you find this behavior abusive and will report it. And then leave.
The beauty of online grading/rating sites for physicians is that this allows you to hold them accountable.
But the goal is to get the treatment you need. Although it may take some searching, there are doctors who are willing and able to help you. Here are simple tips to help you get the maximum benefit from each visit with your doctor.
1. Recognize the knowledge gap, but don’t tolerate gaslighting.
Many doctors are unfamiliar with CFS and fibromyalgia. It’s fine if a physician honestly admits they don’t know much about these conditions. What’s not okay is gaslighting, implying nothing is wrong with you or that your symptoms are “all in your head.” If that happens, it’s time to find another doctor.
2. Ask (politely) to record the appointment.
Before your visit, learn how to record audio on your phone. At the appointment say something like:
“Because of my brain fog, it’s hard to remember everything you explain. Would you mind if I record our visit so I can review your recommendations later? I value your guidance, and it’s important to me that I remember it correctly.”
Most doctors will understand. If yours declines, respect that. Then ask them to write down their key recommendations for you.
3. Focus on just a few priorities.
Doctors typically have only 10–15 minutes per appointment (including reviewing records and updating charts). Pick one to three key concerns for each visit, such as “Today I’d like to discuss sleep and pain.” You can always schedule follow-ups for other issues.
4. Request a few specific treatments for your symptoms. For example:
When talking with your doctor, it helps to suggest a few concrete options rather than leaving things open-ended. Here are three approaches you can take:
- Common and straightforward treatments. Example: “Could I try Flexeril, 5 mg, taking a half tablet or full tablet at bedtime for sleep and pain?” For widely used medications like this, you usually don’t need to bring outside research.
- Less familiar or off-label uses. Example: “Low-dose naltrexone (LDN), 3 mg at night, has helped many people. Could you prescribe 50 mg tablets so I can crush them to make the smaller dose?”
In these cases, it’s helpful to bring a supporting article, such as a scientific review, to share with your doctor. - More controversial options. For treatments that go against standard guidelines, like prescribing antibiotics or thyroid medication without typical test results, it’s reasonable to ask. But understand your doctor may not agree. Some patients choose to consult a holistic or integrative physician for these approaches.
5. Bring a trusted companion.
A friend or family member can offer emotional support and help capture key details in notes.
6. Give your doctor a printed question list.
Type out your questions ahead of time and bring two copies, one for you and one for your doctor. It’s faster and more efficient for the physician to read through your list and respond than for you to ask each question separately. (If you’re recording, they can move through the list even more quickly.)
These steps will help you leave every appointment with clearer guidance and less stress.
Free Information Sheets to Help Your Recovery
For free information sheets on how to recover from conditions discussed in the 2-part series above, email me at fatiguedoc@gmail.com and ask for the information sheet(s) pertinent to your situation. Key ones would be:
- CFS, fibromyalgia, and Long COVID recovery
- Addressing organ injury or shortness of breath in Long COVID
- Sensitivities/MCAS
- POTS
- Addressing chronic pain
- Neuropathy
- Recovering on a tight budget
Just let me know which of these you would like.