An apology to patients with chronic fatigue syndrome

I’ve been sick since 2001 when I failed to recover from what appeared to be an acute viral infection. It has left me mostly house-bound, often bed-bound. In effect, I’ve had the flu without the fever for almost ten years: the aches and pains, the dazed sick feeling, the low grade headache, the severe fatigue. It cost me my career as a law professor; it cost me the ability to be active in the lives of my children and grandchildren.

Because I meet the Centers for Disease Control (CDC) case definition, I’ve been given the diagnosis, Chronic Fatigue Syndrome (CFS). Although there have been some promising developments (a possible connection to a retrovirus; the presence of unique proteins in the spinal fluid of CFS patients), as of this writing, there’s no proven cause and no cure. This is not surprising, given that so little money is allocated for research into this debilitating illness. Why? One reason is the absurd name. As others have pointed out, calling it, “Chronic Fatigue Syndrome,” is like calling Emphysema, “Chronic Cough Syndrome,” or Alzheimer’s, “Chronic Forgetfulness Syndrome.”

On October 15, 2009, Dr. Nancy Klimas of University of Miami’s Miller School of Medicine spoke about the lack of research money to the New York Times:

My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V.

When doctors ask what’s wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor’s office.

Option #1: If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome. One doctor said: “Just drink some coffee.”

Option #2: If I say, “I contracted a serious viral infection and never recovered,” it goes down better, but by saying this, I’m undermining the effort to bring legitimacy to the illness. Legitimacy means research money. By avoiding the phrase, Chronic Fatigue Syndrome, I’m also undervaluing the lifelong work of many doctors, including Nancy Klimas, Dr. Anthony Komaroff of Harvard Medical School, Dr. Charles Lapp of the Hunter-Hopkins Center, and Dr. José Montoya of Stanford University School of Medicine, all of whom have dedicated their careers to CFS research and patient care.

A few weeks ago, I had an appointment with a doctor regarding something unrelated to my illness. The New Patient Form asked, “Are you in good health?” I checked “no.” Next question: “If you checked ‘no,’ please explain.” How many times have I faced “please explain” on a medical form and had to choose between those two unsatisfactory options? I’ve lost count. I needed the best care I could get from this doctor so, playing it safe, I reluctantly took option #2 and wrote, “Contracted a serious viral infection in 2001 and never recovered.”

On the back side of the form was a list of symptoms with instructions to put a check in the box next to any that applied. Looking down the list, I reached: “Fatigue.” What’s a person with CFS supposed to do with that choice? Most of the people I know say they’re tired. But the fatigue of Chronic Fatigue Syndrome? The CFIDS Association of America calls it bone-crushing fatigue. I call it bone-crushing and sickly fatigue—that flu without the fever. Laura Hillenbrand, bestselling author of Seabiscuit and Unbroken, and a CFS sufferer herself, put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”

Given no alternative but “Fatigue,” I checked the box and moved on.

In the exam room, the doctor looked at my form and asked: “What’s this viral infection you never recovered from?” Without using the phrase Chronic Fatigue Syndrome, I succinctly explained the different theories regarding the cause of my continued illness. He listened and then said: “What’s the diagnosis?” I was cornered. “Chronic Fatigue Syndrome,” I said. I watched him disengage from me. He swiveled on his stool, put his note pad down, turned back to me as if we’d just met and said: “What have you come to see me about today?”

On March 3rd, Dr. Montoya said in a talk at Stanford University that it was his dream that the medical community would someday produce a formal apology to patients for not believing them all these years when they said they were facing a real illness.

Millions of us share your dream, Dr. Montoya.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

email

Comments are moderated before they are published. Please read the comment policy.

  • http://pulse.yahoo.com/_L23P6QYJSNMIJDLFVCMG4F6M7U Stephanie

    Reminds me of those of us women who suffer from severe nausea, vomiting, dehydration, weight-loss, dizziness etc. in pregnancy (Hyperemesis Gravidarum). Extremely debilitating and can be very dangerous, but when describing the symptoms, it just sounds like “Morning Sickness”. It’s SO difficult when most people think your symptoms are common, that you are just being weak, and do not require attention. 

    • Toni Bernhard

      Hi Stephanie. Yes, it is so difficult. They need to take the word “fatigue” out of the name. An international committee of physicians and researchers just proposed that very idea, pointing out that the word “fatigue” isn’t in the name of illnesses such as MS or lupus or even cancer, even though people who suffer from them experience fatigue. Thanks for reading and commenting. Warmly, Toni

  • Anonymous

    As a woman, once fatigue is mentioned, the diagnosis is depression.  I no longer discuss my fatigue with my doctors.

    • Toni Bernhard

      You’re not alone in avoiding the word “fatigue” when talking to your doctor. I hope this changes soon. There are good people working on our behalf out there. The health care community needs to listen. Warmly, Toni

    • http://loveablehomebody.blogspot.com/ Ashley

      Well, we’re just hysterical females, after all, aren’t we? Sexism is alive and well among some male doctors. It’s common for doctors of both sexes to just write off symptoms with a probable cause and without thorough investigation. Or if they don’t find anything wrong in basic tests, many tend to make assumptions. Right you off. Lots of doctors don’t look further than the textbook case of diagnosis. Sorry you had to go through that.

  • Karina Maier

    I come to the conclusion that most of the time it is better to just avoid the CFS topic in any doctor appointment. But what about: I have a unexplained neuro-immune dysfunction, low NKcell/activity, a bunch of activated viruses like HH-v6, 7, CMV, EBV, Mycoplasma, high RNnase L, abnormal C4/CD8 ratio, high Fibrogenen and so forth. Let the doctor figure out what this all means, that’s what they are paid for …..!

    • Toni Bernhard

      Hi Karina. Your list is a version of what I tried to say to this doctor although I kept it shorter! But then when he said, “What’s the diagnosis?” as I say in the piece, I felt cornered. With a little hope (got to have hope!), I said “Chronic Fatigue Syndrome.” You’ve read what happened next. Thanks for your comment. Warmly, Toni 

  • http://www.facebook.com/profile.php?id=100001864093101 Robin Durham

    Hi Toni, I have a different point of view.  Admitting to a CFS diagnosis is an opportunity to show a physician that CFS patients are not hysterical, malingering, annoying, terrorists (really, Simon Wessely, really?), or any other stereotype we’ve been accused of, both publicly and privately.  

    I write down “I was given the diagnsosis of chronic fatigue syndrome” in the box.  If asked about it, I look the physician in the eye and explain my symptoms and that I am disabled because of them.  I used to feel something akin to shame when talking about it, but, after so many years of being sick I refuse to feel that way about a medical diagnosis in a doctor’s office.  I make sure that I speak calmly, that I don’t come off as anxious or emotional.  If my primary physician has a resident-in-training, I always consent to have them examine me, and then make sure to discuss how the illness has impacted my life, and the latest research.  

    If I am treated badly, I simply don’t go back.  However, I have only had one physician act dismissive of me since I started taking this approach.  Physicians are human – I know a few in my private life.  The illness is very frustrating to them as well.   As patients, we can empower ourselves in the exam room to expect the same quality of care as any other patient.

    • Toni Bernhard

      Hi Robin. I appreciate and respect your attitude — seeing the statement “I have Chronic Fatigue Syndrome” as an opportunity to educate a doctor. I’m inspired by it to keep trying, although I admit to having tried it without success. I know how to act in a doctor’s office: I’m calm, succinct, deferential. I’ve tried doing just what you say — explain my symptoms in a calm manner but more often than not, it hasn’t made a difference. I’ve had two different complications for which I was referred to specialists who told me in no uncertain terms that my new symptoms could not possibly be related to the CFS. My research indicates otherwise. All I ask is that they be open to the possibility.

      I agree that the illness is very frustrating to doctors. What I wish is that they would be taught in medical school that it’s okay to have a patient that they cannot “fix.” Many doctors don’t want to stick with a patient who doesn’t respond to the treatment options they have available. I talk in my book about the range of responses I’ve received from doctors. (It’s in my chapter on equanimity of all places — on how I’ve learned to respond with calm acceptance to these disappointments.)  I’m fortunate that my GP is willing to stick with me even though he can’t “fix” me and is open to treatment options that I bring him. He considers me the expert on CFS. 

      Thanks so much for reading and leaving a comment that adds to this difficult dialogue. Warmly, Toni

  • http://pulse.yahoo.com/_WCU73KEDRMCII6DTEN74EAJA3U helen

    Hi Toni,  I don’t think fatigue covers it either.  Currently bedbound, I just cooked eggs once again for myself as standing is such a problem.  I once told my doctor this after she recommended Tai Chi and a got a humiliating sneer in return.  Yes it silenced me.  I’m not tired, I’m too weak to stand.

    I once had to see a Neurologist after a car accident.  He questioned me about hand or arm pain, when I told him it predated the accident and was caused by FM, he laughed hard and said ‘that doesn’t exist, and as for that other thing, ME is it? That doesn’t exist either’. He was English.  All this in front of a junior doctor.  Bizarrely, he wrote to my legal counsel saying that the accident made my FM worse.  Yes I am silenced, living a lie.

    I’m with Dr Montoya, hoping for an apology.  

    Helen

    • Toni Bernhard

      Hi Helen. Hearing you say that you’re silenced is so painful, but it appears to be true for so many people. In my book, I recount several visits with specialists who dismissed my symptoms. This article just contains one of them. Yes, I’m with Dr. Montoya and you: hoping for an apology. Thanks for reading and commenting. Warmest wishes, Toni

  • http://profiles.google.com/amylynn.hunt Amy Lynn Hunt

    I hoped this was an apology. We probably won’t ever get it. I have recently heard of many CFS/CFIDS/Fibromyalgia patients suing their doctors, as they have ended up with Post-Traumatic Syndrome from the way they have been treated. At first i thought (and i have had these fun things my entire adult life – i have no idea what it’s like to even have kids or grand-kids or be a “normal” adult) that was a bit extreme… but now i think it might just be a good thing. I never had panic attacks in my life, but still do when going especially to a new doc, or doing what i have to do tomorrow, beg for SSI again. I do best when i just stick with my friend and fam who love me, and imagine what it will be like when i have to do the doc thing. 

    Gentle hugs to all!!

    • Toni Bernhard

      Hi Amy Lynn,

      I was hoping that lots of physicians would read my piece and realize that (some of them at least) owe us an apology. I know what you mean by sticking with your friends and family who love you. We’re so fortunate to have that support. I write a lot about the difficulties of dealing with isolation in my book. Thanks for reading and commenting. Warmly, Toni

  • Susan Sitterson

    12 years ago, I, too, had a viral infection that I never recovered from.  In reading your post, I recall the “bone-crushing fatigue” and the overwhelming feeling that my life, as I had known it, would never be the same again.  I went on FMLA and just as my paid time was nearing being exhausted, a pediatric cardiologist that worked in the same hospital I did, “diagnosed” me with POTS- Postural Orthostatic Tachycardia Syndrome.  He prescribed Florinef for me and within 1 week, I started feeling like myself again.  It took almost 2 years on the florinef, then weaning down- but I will forever be grateful to him for butting in.  I did a lot of research and it seems like many CFS patients eventually get diagnosed with POTS.  I know for me, it saved my life.

    • Toni Bernhard

      Hi Susan. Yes, I talk in my book about also being diagnosed with POTS. Unfortunately, Florinef didn’t help me. I’m so happy to read that you were so successful with it. Terrific!  All my best, Toni

      • Susan Sitterson

        It was a tough road, that unfortunately, was not without it’s own pit-falls.  Very small throughout my whole life, over the two years, I gained about 80 pounds on the florinef.  I eventually got a gastric by-pass, and my life was truly changed.  I look back on those years, and I can pin-point the exact date I got the viral, upper respiratory infection, and the downward spiral from that point.  The mis-diagnoses, the myriad of lab tests, the antibiotics, the trigger-point pain, the dizziness and fatigue, tilt-table tests, and the general lack of knowledge in the medical community. (I’m a pharmacist, so it was especially devastating). I was very lucky, with a great employer, my “knight in shining armor” cardiologist friend, and my supportive family….I wish you the best.