One of the most frequently asked questions by people who have, or think they might have, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) is who are the "experts" working with these illnesses in their area? The answer is that experts are "few and far between" and scattered around the country. 

There are doctors who are very knowledgeable and see patients in all-inclusive centers dedicated to these particular illnesses. However, using these may require considerable travel, and good insurance coverage, as well as sufficient financial means by which to absorb the cost of travel and patient balances on services and treatments.

There are centers in many states that have combined a variety of practitioners and offer a range of healthcare services, usually a blend of traditional and alternative medicine. These type of centers work with many chronic conditions and might be good options for a number of patients. However, these centers tend to accept few insurance plans.

The best suggestion for patients is not to lose hope, but learn how to take advantage of the health care that is available to them—according to their insurance and within their financial means. It is still possible to relieve symptoms, reduce exacerbations and improve overall function without going to the "experts".

Finding a Health Care Provider

Most of us with ME/CFS or FM can appreciate that finding a caring and capable doctor can be half the battle. This can be quite a frustrating and disappointing process. Patients will gain more (more help, less frustration) if they set realistic expectations and employ certain strategies to make the most of what is available to them. It is also important for patients to become aware about some of the factors driving the current problems in healthcare.

Many states (Massachusetts, in particular) are suffering a significant shortage of primary care physicians mainly due to fewer medical students going into primary care, since they are being paid a much lower income in this field and many doctors are becoming overwhelmed by tighter schedules and higher patient quotas imposed on them. As a result, many established doctors are leaving this field and some have set up private practices which operate on annual cash retainers (i.e. "boutique" or "concierge" medicine).

Many chronically ill people are often covered under Medicare provisions and/or Medicaid (a medical benefits program administered by states and subsidized by the federal government). Be aware that Medicaid is not accepted by all doctors due to very low reimbursement rates being reported.

 So, what we all are left with is a healthcare system which is certainly not fair nor easy. Thus it becomes all the more important for patients to learn how to make the most of what is available to them.

Primary care physicians (PCPs), most often internists, but who can also be general or family practitioners or doctors who specialize in geriatric or pediatric care, are usually the first point of consultation. Patients, especially those who have developed chronic and multiple health problems, really need someone to help oversee things and guide them along, especially when they are too sick to do so on their own.

A capable, open-minded PCP can be quite instrumental in helping patients connect with other doctors (even if they themselves are not highly knowledgeable about ME/CFS or FM) who can evaluate, order appropriate tests, and recommend treatments to minimize symptoms, reduce exacerbations and improve daily function.

It is highly unlikely that any single healthcare provider is able to adequately address all of medical issues found in ME/CFS or FM. These illnesses are complicated, affect many body systems, and respond best to a multi-pronged treatment approach.

Specialists can get the ball rolling but, by and large, they do not get involved with ongoing care. Therefore, this  highlights the need and benefit of finding a  good PCP and learning how to work with him or her. 

There are things patients should look for in primary care physicians and some things which are reasonable to expect from them as well as ways for patients to make the best use of time spent with their doctor.

Tips on how to get the most out of a doctor's visit

Finding a primary care physician has become a challenge for many patients around the country and this is becoming a frequent topic reviewed in magazines. Even aside from someone seeking medical care for ME/CFS or FM, time allotted for appointments with physicians is shrinking. So patients, like it or not, must prepare for them as carefully and thoroughly as possible.

Many, but not all, of the tips and recommendations listed below are those provided by Dr. Lucinda Bateman in a workshop at the 2007 International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Conference.

• Primary care physicians/providers should be personable, open-minded, accessible and up-to-date. As patients, many of us realize that finding someone who satisfies even these four qualities might be a challenge. One important thing to remember is that this will be the doctor with whom patients will likely have the most contact and therefore, this needs to be someone with whom they can comfortably communicate.

• Many patients will try to stay with their current PCP but might find as their needs change, or their condition becomes more complicated, that their doctor does not adequately understand the scope of their illness. If their doctor is at least open-minded and will accept information about the illnesses, then it is still possible to work with him/her. However, if patients find their doctor is not listening to them, not believing in their symptoms or dismissing them in some way, or becoming apathetic or rude towards them, then they will need to find someone else.

• Try to get more information about new PCPs before making the switch (i.e. before actual transfer of medical records and designating him or her on an insurance plan). Some practices, at least in the past, were agreeable in having patients meet and have a short, general discussion with a given doctor about their knowledge and working experience with ME/CFS or FM (often referred to as "meet and greet" appointments). Another option might be to call and review the same information with the office manager.

• The role, skill and scope of the primary care provider is another important issue to understand. It is reasonable for patients to expect that their PCP will provide them with urgent care (assess an urgent problem or direct patients for appropriate care), help them receive a diagnosis for any given problem (whether the PCP is able to do so on his/her own or needs to refer patients to a specialist for evaluation), help to manage chronic symptoms or conditions, and check that preventative testing or care is getting done. From a patient's experience, this is how primary care should be ideally provided. But realistically, there will be times when some PCPs will prefer to turn over certain aspects of the illness to other doctors. One important area of debate is who is best able, or willing, to take on pain management.

• Plan ahead and schedule follow-up appointments while at the doctor's office. Arrive to appointments on time or early (the extra time can help people gather their thoughts and recover from travel to the office). The goal is not to waste any of the consultation time.

• Prepare as much relevant information as possible ahead of time for an upcoming consultation, especially by having a list of current medications readily available, completing forms at home (ask if these can be mailed or transmitted ahead of time), and identifying which symptoms/problems will need to be addressed at this appointment.

• Keep a personal journal (whether in a notebook, in the blocks of a large calendar, or on the computer) to track symptoms, medications, reactions to medications and/or what might trigger some symptoms. This tool can help patients not to overlook anything at the visit and maximize time with the doctor.

• Once at the office, limit the conversation on niceties and unrelated issues to a minimum. Also, don't waste time with the doctor on things that s/he would likely not be in charge of, such as billing questions, bad parking, or some other non-medical matter.

• Go to the appointment with the above information written down, but keep it short. Perhaps go in with only an outline of these concerns and problems. Keep as much information as you want for your personal use, but it is better to condense this information for a doctor's visit.

• Consider using other ways to quickly and effectively communicate symptoms with the doctor—create a small chart of primary, recurring symptoms (i.e. sleep, mood, pain, fatigue) and rank these from 1 to 10, or create a pain diagram (using an image of a body, front and back) and highlight and note areas of pain. These can also be effective tools by which to monitor improvement or changes. A word of caution from a patient's perspective—don't go overboard with this sort of thing and recognize that some doctors may totally misinterpret these efforts by thinking patients are far more functional than they are just by being able to compile this information, or viewing them as becoming overly obsessed about their illness (by the attention they are giving it).

• Try to coordinate presentation of symptoms to how most doctors handle their office visits—they follow an approach called SOAP—subjective (this is part of patient-reported problems), objective (data captured/ reviewed by the doctor), assessment, and plan. Therefore, prioritize and bring up symptoms and concerns at the beginning of the appointment. Above all, don't hold out on bringing up an important problem until the end of the visit—even if there is some hesitation or embarrassment about it.

• If the doctor starts to ask questions before all symptoms can be brought up, then politely remind him or her that there is more information to be shared on that problem, or that there are several other problems to cover at this appointment. If there will be many problems and concerns to be reviewed, be sure to schedule an extended appointment.

• Know your insurance plan, and what it will cover or not, ahead of time. Remind the doctor about plan limits or high co-pays, especially when certain tests or medications are being proposed.

• Know your medications—learn their proper names, dosage, how they are to be taken and their general purpose. When listing these, organize them by purpose, because this can help the doctor easily see the conditions for which patients are being treated and what is being used. Include any supplements or herbal medicines and provide all healthcare providers with the same list. Be sure to review risks and benefits of each medication, as well as interactions. Medications and relevant information (like side effects) used in the past should be listed separately from those currently taken on a regular basis.

• Identify and know your conditions and their status. For instance, if someone has sleep apnea, note the date of the last sleep study and whether any equipment is being used as part of treatment. If someone has a thyroid problem, note the last relevant test results and what medications are being used to control this problem, and so on.

• Know, keep track of, and arrange for your own basic preventative screenings and tests (i.e. GYN exams, mammograms, or prostate exams). It is also recommended that patients be aware of when periodic lab tests should be ordered while on certain medications.

• Ask for and receive a copy of all lab tests done and keep in a file folder or binder. If you can scan them and keep copies on the computer, that is helpful as well.

• Know what the general criteria are for ME/CFS or FM and how you meet the case definition for these illnesses. This is something patients can use if, or when, some doctors might say they do not know anything about ME/CFS or FM, or claim the illnesses don't exist. Consider printing this information and having it available for a discussion with a doctor.

• Most patients find it may be very helpful or even necessary to bring a family member or a friend (complete appropriate HIPAA privacy forms first) when meeting with a specialist and/or when a lot of information needs to be exchanged. It can be very difficult to concentrate and absorb details when learning about a new medical problem. Also, ask for the doctor to write down the diagnosis, certain terminology that s/he used during the consultation, medications, and/or anything else relevant to this particular problem.

   

What type of doctor is best for ME/CFS or for FM?

To understand what type of doctor is best suited for ME/CFS or FM, it is helpful to consider how doctors might have learned about the diagnosis and treatment of these illnesses. Lack of time may prevent the most well-intentioned doctors from staying abreast of the most significant research information and clinical guidelines on many illnesses.

As mentioned earlier, the worldwide number of physicians (some of whom are also involved in research) who could be considered to have true expertise in the diagnosis and management of ME/CFS is very limited. Periodically, some medical journals will publish information about ME/CFS or FM, but the depth to which these articles go or the random aspects brought up about these illnesses can vary greatly.

The number of doctors who are well informed about ME/CFS remains small. Many doctors are not well informed and this could greatly influence their approach to the illnesses.

Patients have had some success in getting diagnosed with ME/CFS by infectious disease specialists or neurologists, partially due to the type of abnormalities and dysfunction they might detect in various tests. It is not yet clear how much the newest diagnostic criteria for ME/CFS put forth in the report from the Institute of Medicine will improve doctors' general understanding. 

In the last few years, more doctors (especially rheumatologists) have become familiar with FM. Individuals who have FM have been usually diagnosed by rheumatologists mainly because the first standards for the classification of FM were created in 1990 by the American College of Rheumatology. Therefore, FM tends to be somewhat better recognized by doctors in this specialty, though there can be differences in their treatment approaches and the research or theories that any given rheumatologist may follow.

Other specialties that might be working with FM (in more recent years) are physiatrists (this is a branch of medicine that focuses on the patient's musculoskeletal system and spine, and uses physical therapy and some medications as primary treatments) and sometimes, pain management specialists (some are physiatrists, but usually they are anesthesiologists) can help with persistent, chronic pain. 

The Centers for Disease Control (CDC) also has a summary on the diagnosis and treatment of FM but it is quite limited. Criteria for the classification of FM are further detailed in our Diagnosis of FM section.

Cheat Sheet for doctor's visits

• Make a list of your questions, then sort them in order of importance and ask only the top 3-4 questions. Brevity and time is of the essence.

• Write down the doctor's answers.

• If tests are being ordered at an independent lab, have the doctor write "copy to patient" on the script, so you can get a copy sent to you.

• Don't overload a doctor with all your symptoms. This will tend to shut him/her down.

• Bring pertinent information and test results from other doctors with you. Do not rely on the doctor's office faxing something. This saves time.

• Ask the doctor to make pertinent notes in your record (i.e., not sleeping well causing increased flu-like feeling, drowsiness during the daytime, etc.). Many times a doctor tunes this important information out and just simply skips it. Having this information in your record will also be very important for filing for disability.

• Ask for the longest appointment necessary to meet the number of important matters to be reviewed. Sometimes s/he will have a 40-minute time slot.

• Consider seeing your primary care physician more frequently, either monthly or bimonthly, when possible. It is easier to catch your PCP up on problems on an ongoing basis than once or twice a year.

• Try to keep a log of any medication reactions, good and/or negative, that you have. Don't trust your memory.

• Do not accept abusive behavior from doctors. Many patients feel they have no choice. But abuse—emotional or physical—is not acceptable behavior.

How to Be Your Own Best Advocate
By Amanda Mathiesen

When you have a well-researched disease with many treatment options, your relationship with your healthcare team will probably be simple. Let’s say, for example, that you have type 2 diabetes. Your providers will almost certainly talk to you about medication, diet, and exercise. With a combination of these treatments, you are likely to be able to resume a normal life.

But what if your disease is not well researched? What if the Centers for Disease Control has recommended exactly zero medications for your disease? What if medical schools are, by and large, not teaching doctors how to treat or even recognize your disease? What if exercise makes you feel worse?

These questions are familiar to me, because I’ve had all the symptoms of ME/CFS for over two decades. For an embarrassing number of years, I believed my primary care physician when she said that (a) I didn’t have the disease and (b) there would be no point in diagnosing me if I did. I also believed her when she told me that there was no treatment. None of these things were true. Around 2020, I got a new and excellent primary care provider.

During the course of twenty years, I tried to exercise my symptoms away, only to find that my disease progressed from moderate to severe. By 2021, I was largely bedbound. When I was finally diagnosed with ME/CFS and fibromyalgia by a kind rheumatologist in January 2022, I was determined to make up for lost time.

Like my former PCP, my new rheumatologist, whom I’ll call Dr. Basil, was under the impression that there was no treatment for ME/CFS. My online reading, however, told me that low-dose naltrexone (LDN) was helping patients with the pain and brain fog that come with this neurological disease. I was desperate, and I wanted to try it.

Dr. Basil was not convinced. He had never prescribed the drug before, he didn’t know of any colleagues who were prescribing it, and he was concerned that the drug might be harmful.

So what could I do? I could wait for the CDC to approve a medication for ME/CFS. Then again, it had been almost nine decades since the 1934 epidemic of myalgic encephalomyelitis in Los Angeles, and the CDC had yet to approve anything to help sufferers with the disease. Alternatively, I could wait for medical schools to start training doctors to understand and treat ME/CFS. The only problem with that approach is that if medical schools start doing this today, the first newly minted ME/CFS-literate doctors will finish their training in 2030.

Another possibility was that I could continue to make appointments with other rheumatologists in the hope of finding someone who was willing to prescribe the drug. I had seen one rheumatologist before Dr. Basil, though, and she hadn’t been able to diagnose any of my diseases with autoimmune features, which include Crohn’s disease, fibromyalgia, and ME/CFS. In fact, she had said with an air of certainty that I didn’t have any autoimmune diseases, something that would have come as a surprise to my gastroenterologist, who had the colonoscopy photos to prove otherwise. This experience had left me with the impression that good rheumatologists were hard to find.

There was something in Dr. Basil’s manner that suggested to me that he was smart and ethical, and that I should keep stating my case. After about six months of me advocating for myself, he prescribed LDN. Although each patient is different, LDN has reduced my pain and brain fog more than anything else I’ve tried, and it’s made my life much more livable. I have experienced no side effects.

Here are the lessons I learned about self-advocacy along the way. My hope is that you, the reader, will find the inspiration to work with your own smart, ethical doctor to access better treatment options.

1) Do your research.

I first read about LDN when I joined an online platform called stuffthatworks.health in 2021. It’s a website that collects feedback from people with chronic diseases and keeps track of which treatments are most helpful to them.

While the online crowdsourcing site had gotten me interested in LDN, I knew that Dr. Basil was more likely to consider putting me on the drug if I could find medical articles to support that course of action. In February 2022, I found two medical articles by Jarred Younger, PhD, the Director of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama. His work confirmed that LDN was a promising treatment for chronic pain in autoimmune conditions. I sent these articles to Dr. Basil.

2) Listen to what your doctor’s concerns are, then answer those concerns.

After a few months, Dr. Basil pointed out that even if he wanted to prescribe LDN, he didn’t know what the dosing protocol was, since nobody he knew was using it. I sent him the dosing protocol made available online by the LDN Trust, a U.K. nonprofit designed to help patients access the drug. When Dr. Basil eventually found a colleague who was prescribing the drug, the colleague’s dosing protocol was the same.

Second, Dr. Basil didn’t know of a pharmacy that could compound the drug. Neither did I. It definitely wasn’t available through the big chain drugstores. I checked in with MassME, and Ken Casanova, the Head of Patient Services, told me of a compounding pharmacy that many patients were using. Insurance would not cover the prescription, but a three-month supply was under $55. I could afford it.

Admittedly, I had an advantage in terms of finding this information because that’s what I used to do professionally before I got sick. I was a reference librarian. If you need help finding medical information on an ME/CFS treatment that interests you, I encourage you to ask the reference librarians at your local library. You may be surprised by all the resources they have for you.

3) Appeal to your doctor’s sense of empathy.

At the end of six months, Dr. Basil was still reluctant to prescribe the drug, largely because he was concerned it might be harmful. And yet, everything I had read said that side effects from LDN were rare and mild. My ME/CFS-related pain, on the other hand, was not rare and mild. It had become severe and constant. I dreaded living another year with the pain, let alone the three additional decades I might expect to follow.

However, I had an ace in the hole left. Two, really. The first was that my rheumatologist's office contained a sign indicating that patients had the right to have their pain addressed. The second was that I was more and more certain that Dr. Basil was an ethical and empathetic person. I believed that if I raised the issue of the right to pain relief, my doctor's own sense of ethics would persuade him to give me a test run with LDN.

That turned out to be the case. I’ve been on LDN for about a year now. My pain has gone from “How on earth am I living with this?” to “Right, I can live with this.” A year ago, my brain fog was so severe that I was asking my husband for the names of our nieces. It’s now cleared up to the point where I was recently able to publish a letter in the Boston Globe about the debilitating nature of ME/CFS. I’m also able to do a bit of volunteer work under the tutelage of Ken Casanova, the man who helped me find a compounding pharmacy.

Conclusion

I’m sharing this story with you because you may be where I was in January 2022. Your doctors may want to help you with ME/CFS, but they may not know how.

Given the circumstances, what should we, the millions of ME/CFS patients living in the U.S., do? Should we wait for the day when the CDC and medical schools start prioritizing our illness, or should we try to work with the doctors we already have? Large-scale advocacy work is essential in the long term, but I believe that in the short term, we need to work with the doctors we have.

Looking back, my original self-advocacy teachers were the young, gay men I met when I started volunteering for an AIDS hotline in 1990. At that point, AIDS was still largely a death sentence. Some of my colleagues at the hotline had HIV themselves. As exhausted and sick as they were, I saw them advocate for themselves and other patients when the government was doing little or nothing to help them.

Self-advocacy is not without its difficulties for both patient and doctor. I’m sure Dr. Basil would tell you that for six months, I was a pain in the neck. That’s the downside of self-advocacy: if you refuse to accept that your pain cannot be treated, you may be perceived as difficult. But then, those of us who struggle with ME/CFS are fighting a difficult adversary. By 2022, I had the rock-solid determination that only minute-by-minute agony can teach, and Dr. Basil bore the brunt of it.

At this point, though, I think Dr. Basil and I are happier and more capable than we were at the beginning of our journey together. I have less pain and brain fog, and Dr. Basil is now empowered to treat other patients that he previously might have considered untreatable. That’s why he became a doctor in the first place: to help people. I feel our interactions helped him become a more effective doctor, and he feels, correctly, that he assisted me when nobody else would. Perhaps a similar journey is waiting for your doctor – and for you.

These are Jarred Younger, PhD's articles: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ and https://pubmed.ncbi.nlm.nih.gov/23359310). 

The LDN Trust's dosing guide, patient guide, and prescriber guide can be found here: https://ldnresearchtrust.org/2022_LDN_Guides. The LDN Trust is a British nonprofit, and all their guides are reviewed by medical doctors. The 2022 Guides are the most recent ones. 

Note: The Massachusetts ME/CFS & FM Association endeavors to make our content as accurate and timely as possible, but we neither dispense medical advice nor endorse any medical product, practitioner or technique. Readers are advised to work with their primary healthcare practitioners – using strong self-advocacy! -- before engaging in any health-related practice.

More resources

ME/CFS Self-Care: The Basics

Chronic Fatigue Syndrome and Fibromyalgia Specialists—A list of ME/CFS and FM specialists on U Compare Health Care.

Consequent conditions to CFS/ME and cancer prevalence

Dr. Gudrun Lange Reviews Neuropsychological Testing for CFS and FM

How Doctors Think by Jerome Groopman, M.D.

In an effort to improve medical efficiency by Dr. Byron Hyde

Links to Lists of Health Care Providers Outside of Massachusetts

Making the Most of Your Doctor Visit This article reviews tools (like charts and pain logs) that can help patients record and monitor their pain—these are provided by the American Chronic Pain Association (ACPA). 

On the Morbid Fascination with Psychiatric Morbidity by Dr. Alan Gurwitt

Recommended for ME/CFS and FM patients Undergoing Surgery by Dr. Charles Lapp

The ME/CFS Initiation— A Primer for New Patients

The Physical Basis of CFS by Dr. Anthony Komaroff

Using an Emergency Room Properly

What questions should a doctor be asking? by Dr. Byron Hyde

Why doctors can't diagnose by Dr. Byron Hyde