No Poster Girl: To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

I am reposting this blog entry from No Poster Girl because it is excellent and maybe it’ll reach someone who needs it and make a difference in their life.

Recently I realised that after becoming sick, I bought a Gazelle exercise glider and signed up for an extremely intense series of exercise classes at Pure Barre (I only went to one class and left in tears. It completely destroyed me. But I didn’t know what I was sick with at the time). I took to running up and down the steep stairs at work to “ward off blood clots and pulmonary embolisms” because I sat at my desk for such long hours. I thought perhaps I had ME/CFS, but didn’t know anything about it since doctors refuse to talk about it.

Come June of last year, I started meditating daily and I thought that took care of numbers 1 and 2 below… but it seems not enough. I was still active, going to the dog park, running errands, cooking ~ everything! I should have paid much more attention to #3 and I still don’t have an ME/CFS doctor (#4).

The one thing I will add for those newly diagnosed is be wary of the Hummingbird website (although it is a great source of information, it can be overwhelming and I think it really toppled me into a deep hole of fear. I’m still working on intercepting the doomsday thinking that now automatically comes to the forefront of my brain) and avoid typical medical sites that encourage exercise.

Posted on November 30, 2011 by 

I hit a nerve with my “Nothing” post about what I did (and mostly what I didn’t do) after I was diagnosed. And many of the reactions I heard from others touched on the number one, most important, know-this-if-nothing-else piece of advice I wish every doctor would give to every person diagnosed with ME/CFS.

Item #1: Stay inside your energy envelope.

Here are some of the ways that was said:

Nathalie“For me if I had known at the beginning what I had and didn’t over do it on good days I might be in a totally different place.”

Kathy D“After nearly 26 years, I still don’t know what to do except rest most of the time, pace myself very carefully, and take some vitamins.”

Debbie Anderson“If I had been told by my doctors that by pushing my limits, and burning the candle at both ends, would destroy my vascular and heart systems, I would have listened.”

Breathe Easy“I feel so strongly that if I had not tried to just push through and act as if the Dx was bogus, I would not be so bad off today.”

Falling ill with ME/CFS is a real down-the-rabbit hole experience. Suddenly, your body, which has always, up to that point, had enough energy to get you through the day, allowing you to do whatever needs doing, just – doesn’t. It’s as if you’ve always made a certain amount of money and all of a sudden you’ve taken a 50% pay cut. In order to maintain a positive balance in your bank account, you must start budgeting differently; your priorities have to change. Since you don’t have enough energy to spend on all the things you used to be able to get done, you have to start making choices.

Now, noting the need for pacing isn’t uncommon advice – but the problem is that it needs to get to the newly diagnosed quickly. People who develop ME/CFS don’t instinctively know that it’s absolutely imperative that they stay within their energy envelope. Why should they? It’s not something they’ve ever needed to do. Plus, it takes time to learn and to shift from that everything-is-normal state to the I-understand-my-limitations state. And oftentimes, it has to be done over and over again as the illness progresses.

Furthermore, our culture does not encourage healthy, well-adapted responses to illness. It rewards pushing through, and so that’s what the newly diagnosed mostly do. Even after you find out you have to stop doing it, it’s hard to turn away from. We think we have to push through; whatever needs doing is more important than giving our bodies time to rest, time to heal. But for people with ME/CFS, responding appropriately to the body’s tiredness is absolutely mandatory. If we don’t do so, we’ll get worse – at least temporarily, and sometimes permanently. Our energy allotment will go down, down, down – and we’ll have less and less energy to “spend.”

So, because of Item #1, Item #2: Rest.

If you suddenly find yourself inexplicably much more tired than you used to be, the way to stay within your energy envelope is to do less and rest more. And resting doesn’t require you to know for sure what is causing your tiredness – you don’t need a conclusive diagnosis in hand. You also don’t need blood tests, a prescription, to spend cash, or to buy equipment in order to do it.

Maybe that, too, sounds obvious – if you’re tired, you should rest, right? But the amount of rest needed in ME/CFS is a whole new ball game for most people. You have to make a real commitment to resting.

Because I’m talking serious rest. Enforced rest. Give yourself permission to rest. For several months at least, to see if it helps. Clear your schedule. Take FMLA. Quit your job. Shed responsibilities. Reduce the amount of stress in your life. Move in with family if you have them and you can. I know none of this is realistic – upending your life just to lie around and do nothing, and potentially drastically reduce your income? Sure, dealing with upending your life for months, maybe a year, is difficult, but dealing with upending your life permanently is worse.

It is a terrible injustice that this illness receives such a paltry amount of funding, and that because of that, there are not better treatments than simply respecting the limits created by the disease. But until we have those better treatments, resting first, and not when the disease forces you to, is what will give you the best chance at recovery.

Item #3: Where you are now is not necessarily where you are going to be.

When I fell ill, there was much less information on the web about ME/CFS than there is now. The two major things that I remember running across were Jodi Bassett’s A Hummingbird’s Guide to ME and Laura Hillenbrand’s essay “A Sudden Illness”, the latter of which was only a couple years old at that point. Reading “A Sudden Illness” was incredibly frightening. Hillenbrand described such awful events, and such terrible incapacity. I couldn’t imagine how she could endure it, and I was grateful that my case of CFS was not as severe as hers.

Well, it wasn’t then, but it eventually was – and even worse than what she describes, too. This illness is variable and changeable. Some people – the very lucky ones – get sick, are sick for a while, and get better or mostly better with minor limitations. Some people get sick to a degree, and pretty much stay at that level of illness from then on. Some people oscillate, getting worse and then better and then worse again. Some people get sick, then sicker, then even more sick.

So I would counsel the newly diagnosed to realize that a lot of things can happen – just because you’re not very sick now doesn’t mean you can’t possibly get worse, or just because you are very sick now doesn’t mean that’ll you’ll never improve. And a major part of the way not to end up very sick is – you guessed it, back to Item #2: Rest.

Item #4: You need a doctor with at least some ME/CFS expertise.

I didn’t think I needed an ME/CFS doctor, and I didn’t know how to find one, and when I did learn how to find one, they were all so far away that I didn’t think it was worth traveling to see one. And if I had had such a doctor, I might have been told Item #1 and Item #2, at a time when it could have done me more good than when I finally figured it out myself, and I might have heard about and started treatment sooner, and I might be in a better spot now.

Because I didn’t have an ME/CFS doctor in the early years of my illness, I was managed by my GP in a hands-off way. She didn’t know anything about treatment, or anything about ME/CFS specialists. And that’s not at all uncommon. ME/CFS is poorly understood by most medical practitioners. Don’t be a guinea pig, someone who is managed without knowledge, or someone who sticks with a doctor who tells you that you must be depressed, that you just need to exercise, or that your illness is all in your head because all the tests are negative.

An ME/CFS doctor who has seen a lot of the illness before you show up in his or her office will know the pitfalls that come along with not knowing what you’re doing in terms of dealing with this illness, and you’ll give yourself the best chance for a good outcome by being under the care of someone who can guide you along the way. You don’t necessarily need to go to one of the few super-specialists who only treat ME/CFS, but you at least need someone who “believes in” and is familiar with the illness. But I would say that if you can get to a super-specialist, do. (You can find ME/CFS doctors and specialists at the ME/CFS Wiki here.)

So those are my suggestions – the things I most wish someone had told me early on. And my story is the same as those quoted above. I did each one of these things wrong in turn.

  • I was a bit of a workaholic, and I had always gotten better after I’d gotten sick, so I didn’t think there was anything wrong with continuing to push myself, even though I was ill.
  • I took about a week off of work, and then went right back. And I kept showing up to work even though I was so tired that I had to put my head down on my desk for ten or fifteen minutes at a time, several times a day.
  • I thought my case was a mild one, so I didn’t treat it with the gravity it deserved. Well, I only had a mild case until I had a moderate case, and then a severe case, then a very severe case.
  • I didn’t have a doctor who knew anything about ME/CFS, and I had never met anyone else who had it, so nobody told me how vitally important it was for me to rest and stay within my energy envelope.

I, and many other ME/CFS patients, have had to learn all of these – and many other things about our illness – the hard way. It shouldn’t be that way. It’s not as if our illness is uncommon, and it’s not as if it’s unpredictable. Until we know how to prevent and how to actually cure it, having good information, starting from go, is the key to allowing patients to have the best chance at recovery.

Now for those of you who have ME/CFS, what do you wish you’d heard when you first fell ill, or what were you told that was most – or least – helpful?

I will rise. I will return.

Oh how cruel it is that when you really need to write, you can’t. I’ve been so very sick. Apologies to my friends and family for my neglect of correspondence and birthdays (everyone is born in April). Apologies to my husband for having to pick up even more slack while wading through thicker clouds of my fear. Apologies to my dogs who are not only getting no exercise, but who have been rejecting the recently beautiful spring days to lie indoors in the dark next to their ailing Momma. Yesterday, I took a blanket and pillow outside and lay on a dog bed in the garden so we could all get some fresh air. They danced excitedly about thinking I might actually be trying to walk my daily laps again (long ago they gave up their hopes that I might take them to an actual park ~ my putting on shoes now means I’m leaving them to go to a doctor appointment and they hardly raise an eyebrow) and then sulked with heads low when they saw I was inert, as usual.

I think I am worse overall than I have ever been. This is definitely the longest stretch of BAD I’ve ever had. By “sick” and by “bad” I mean unable to do even the little things and needing to stay in bed most of the time. I have been so dizzy and so shaky. I’m chilled, I’m exhausted, my muscles have retracted into hard, fibrous knots. I have the ever-present headache and sore throat and noise sensitivity. My sleep is dismal; I feel utterly tortured by the loss of quality repair time at night. My bed is a battleground: the covers too weighty, the mattress too hot, the pillow to low, the air too cold. I am at once completely unconscious and aware of my surroundings. I am so tired and groggy, but, while I’m dreaming, I am well aware that I am in my room having a dream and that it would be much better to be deeper asleep. But the worst thing about this last week is it has literally felt as if I may not have enough ATP to fuel my lungs, my heart, my brain. There is a point, whether I’m right or wrong, where it feels very obviously like my mitochondria don’t work ~ it is physical, as if I can feel the millions of engines in my organs sputtering and stalling. I’m giving gas, but they just wheeze and die. It feels like, if I read, I then may not be able to speak. Or, if I expend the energy to sit up, I may not be able to breathe. And suddenly the headache and the pain and the stiffness ~ none of it is important because, even if my heart keeps beating, my brain may just flatline.

Yesterday, I did something I’ve never done: I prayed out loud for help. I prayed for this to be taken away. I prayed to go back to where I was when I thought it was bad a year ago or for help for my husband or for us to win the lotto so we could stop this speeding train towards homelessness and poverty. You think I’m being melodramatic? I’m not. I don’t even know how to muster the energy to apply for disability or talk to the bank about our mortgage. A long phone call with the health insurance company (they show termination of coverage at the beginning of January for some reason) yesterday sent me to bed for 3 hours to “recover”. Contrary to how it may seem (I am acutely aware that I rarely gloss over the mental anguish caused by this disease), I really did think I would get better. I thought I would look back on this rough patch as a period of growth ~ a rototilling of the deep grooves and scar tissue of habitual thought and thoughtless action. I would be receptive and do the work and then this coffin-like chrysalis would metamorphose into a new stress-free career and I would feel blessed for my period of attrition. I am now worried that I may not ever work again and, one day soon, our savings will simply be gone.

The good news is, when I was able to get out of bed on Sunday and go about my (abbreviated) routine, I felt a flush of triumph like never before: I came through it. I am (carefully, slowly) walking and talking. You can’t take me down for long. I will rise. I will return.

I’m gonna go get the papers, get the papers…

I don’t know what the people in your life enjoy, but one of the best presents I have received in the past year was The New York Times full digital access from my brother, T. If you are trying to think of a present for your house- or bed-bound friend, this could be a lovely luxury.

Before I was a complete workaholic, I used to enjoy going to the coffee shop near where I lived and reading The New York Times every morning. That turned into weekend delivery and, eventually, after Sunday papers piled up unopened in a corner for months, I stopped reading the paper altogether.

My mother’s partner (significant other? boyfriend? common-law-husband? what is the appropriate term these days?) worked for The Irish Times, we lived with my aunt who worked for the The Irish Times, E.’s father worked for The Irish Times ~ I was surrounded by it my whole life and I’ve missed the paper. I’ve missed having a newspaper routine. I bitch constantly about the format of television news programs and wistfully think about how much I loved to visit The Irish Times building in Dublin: the obvious camaraderie, the huge heavy doors of the lift, what a treat it was to watch the printing presses…

Anyway, I am desperately ill this week. I shouldn’t be expending the energy to type this, but I wanted to share articles once in a while when I am not up for writing. Enjoy:

APRIL 19, 2013

Heart Rate as a Measure of Life Span

By NICHOLAS BAKALAR

A new study, published in Heart, suggests that a higher resting heart rate is an independent predictor of mortality — even in healthy people in good physical condition.

Danish researchers gave physical exams to 5,249 healthy middle-aged and elderly men beginning in 1971. In 1985 and 1986, they tracked survivors, of whom there were 3,354. Of these, 2,798 had sufficient data on heart rate and oxygen consumption for the analysis. Researchers followed them through 2011.

After controlling for physical fitness and many other health and behavioral factors, they found that the higher the resting heart rate, the greater the risk for death. Compared with men with rates of 50 beats a minute or less, those at 71 to 80 beats had a 51 percent greater risk. At 81 to 90 beats, the rate of death was doubled, and over 90 it was tripled.

“If you have two healthy people,” said the lead author, Dr. Magnus Thorsten Jensen, a researcher at Copenhagen University Hospital Gentofte, “exactly the same in physical fitness, age, blood pressure and so on, the person with the highest resting heart rate is more likely to have a shorter life span.”

MARCH 29, 2013, 1:28 PM

Infections Tied to Cognitive Decline

By NICHOLAS BAKALAR

A new study adds to the evidence that chronic infection, known to be associated with vascular disease, is also associated with poorer performance on tests of mental ability.

Researchers studied 1,625 people in northern Manhattan with an average age of 69, testing them with two well-validated tests of mental acuity. They also tested their blood for “infectious burden” — their degree of exposure to five common viruses and bacteria: cytomegalovirus, herpes 1 and 2, Helicobacter pylori, and Chlamydia pneumoniae. The study appeared online in Neurology.

Lower scores on the cognitive tests were associated with higher infectious burden as measured by blood tests, and the connections were most prominent among those without a high school diploma, people who were physically inactive and women.

The reasons for the link are not known, but chronic infection contributes to inflammation, and inflammation leads to atherosclerosis, a known risk factor for stroke and dementia.

“Another mechanism might be that these pathogens are neurotoxic, directly affecting the nerves,” said the lead author, Dr. Mira Katan, a clinical research fellow at Columbia.

“We’ve found a common pattern,” Dr. Katan added, “but we cannot prove causality. If we could show causality, we could intervene and address two very important public health burdens, dementia and stroke.”

PRIL 17, 2013, 11:58 AM

Is Organic Better? Ask a Fruit Fly

By TARA PARKER-POPE

When Ria Chhabra, a middle school student near Dallas, heard her parents arguing about the value of organic foods, she was inspired to create a science fair project to try to resolve the debate.

Three years later, Ria’s exploration of fruit flies and organic foods has not only raised some provocative questions about the health benefits of organic eating, it has also earned the 16-year-old top honors in a national science competition, publication in a respected scientific journal and university laboratory privileges normally reserved for graduate students.

The research, titled “Organically Grown Food Provides Health Benefits to Drosophila melanogaster,” tracked the effects of organic and conventional diets on the health of fruit flies. By nearly every measure, including fertility, stress resistance and longevity, flies that fed on organic bananas and potatoes fared better than those who dined on conventionally raised produce.

While the results can’t be directly extrapolated to human health, the research nonetheless paves the way for additional studies on the relative health benefits of organic versus conventionally grown foods. Fruit fly models are often used in research because their short life span allows scientists to evaluate a number of basic biological effects over a relatively brief period of time, and the results provide clues for better understanding disease and biological processes in humans.

For her original middle-school science project, Ria evaluated the vitamin C content of organic produce compared with conventionally farmed foods. When she found higher concentrations of the vitamin in organic foods, she decided she wanted to take the experiment further and measure the effects of organic eating on overall health.

She searched the Internet and decided a fruit fly model would be the best way to conduct her experiment. She e-mailed several professors who maintained fly laboratories asking for assistance. To her surprise, Johannes Bauer, an assistant professor at Southern Methodist University in Dallas, responded to her inquiry.

“We are very interested in fly health, and her project was a perfect match for what we were doing,” Dr. Bauer said. Although he would not normally agree to work with a middle-school student, he said, Ria performed on the level of a college senior or graduate student. “The seriousness with which she approached this was just stunning,” he said.

Ria worked on the project over the summer, eventually submitting the research to her local science fair competition. The project was named among just 30 finalists in the prestigious 2011 Broadcom Mastersnational science competition. Dr. Bauer, following his lab’s policy of publishing all research regardless of outcome, urged Ria, then 14, to pursue publication in a scientific journal. Dr. Bauer and an S.M.U. research associate, Santharam Kolli, are listed as co-authors on the research.

Now a sophomore at Clark High School in Plano, Tex., Ria said she was excited to see her work accepted by a scientific journal. “I had no idea what publishing my research meant,” said Ria, who last week was juggling high school exams, a swim meet and a sweet-16 party. “My mom told me, ‘This is a pretty big deal.’”

Ria has continued to work in Dr. Bauer’s lab. For her 10th-grade science fair project she created a model for studying Type 2 diabetes in fruit flies. The work will be presented in a few weeks. She plans to build on that research by studying the effects of alternative remedies, like cinnamon and curcumin, found in turmeric, on diabetes in fruit flies.

Ria said she was only just beginning to think about applying to colleges and is intrigued by Brown University and the Massachusetts Institute of Technology, although she has not ruled any school in or out. Dr. Bauer said that he was happy to have her working in his lab and that her biggest problem was that “she has too many ideas for her own good.”

Meanwhile, Dr. Bauer said the study of organic foods and fruit fly health has raised some important questions that he hopes can be answered in future research. The difference in outcomes among the flies fed different diets could be due to the effects of pesticide and fungicide residue from conventionally raised foods.

Or it could be that the organic-fed flies thrived because of a higher level of nutrients in the organic produce. One intriguing idea raises the question of whether organically raised plants produce more natural compounds to ward off pests and fungi, and whether those compounds offer additional health benefits to flies, animals and humans who consume organic foods. “There are no hard data on that, but it’s something we’d like to follow up on,” he said.

Dr. Bauer said he’d love to keep Ria around S.M.U. but realizes that she would have her pick of colleges around the country. “She is really extraordinary,” he said. “If she was a graduate student in my lab, she would be tremendous.”

While far more study needs to be conducted to determine the possible benefits of organic foods on human health, the debate has been settled in the Chhabra household, where Ria’s parents no longer argue about the cost of organic food. “All of our fresh produce is organic,” she said.

DECEMBER 17, 2012, 3:41 PM

Really? Losing Sleep Reduces Your Pain Tolerance

By ANAHAD O’CONNOR

THE FACTS

Chronic sleep loss has many downsides, among them weight gain, depression and irritability. But now scientists have found a new one: It also weakens your tolerance for pain.

In recent studies, researchers have shown that losing sleep may disrupt the body’s pain signaling system, heightening sensitivity to painful stimuli. Though it is not clear why, one theory is that sleep loss increases inflammation throughout the body. Catching up on sleep if you are behind may reduce inflammation.

Scientists believe this could have implications for people with chronic pain. It could also have an impact on the effects of painkillers, which appear to be blunted after chronic sleep loss.

In one study published in the journal Sleep, scientists at the sleep disorders and research center at Henry Ford Hospital in Detroit recruited 18 healthy adults and split them into two groups. One was allowed to sleep for an average of nine hours, while the other averaged two fewer hours of sleep each night.

To assess pain thresholds, the researchers measured how long the subjects were able to hold a finger to a source of radiant heat. After four nights, the group that was allowed to sleep the longest was able to withstand the painful stimuli much longer, by about 25 percent on average.

Several studies in the past have had similar findings, including one in 2006 that showed that one night of cutting sleep in half could significantly reduce a person’s threshold for physical pain.

“Disturbed sleep is a key complaint of people experiencing acute and chronic pain,” one report concluded. “These two vital functions, sleep and pain, interact in complex ways that ultimately impact the biological and behavioral capacity of the individual.”

THE BOTTOM LINE

Chronic sleep loss appears to lower tolerance for pain, though it’s not clear why.

[I am posting the following article because so many of us are on medications. To get straight to the interaction list, go here.]

DECEMBER 17, 2012, 6:21 PM

Grapefruit Is a Culprit in More Drug Reactions

By RONI CARYN RABIN

The patient didn’t overdose on medication. She overdosed on grapefruit juice.

The 42-year-old was barely responding when her husband brought her to the emergency room. Her heart rate was slowing, and her blood pressure was falling. Doctors had to insert a breathing tube, and then a pacemaker, to revive her.

They were mystified: The patient’s husband said she suffered from migraines and was taking a blood pressure drug called verapamil to help prevent the headaches. But blood tests showed she had an alarming amount of the drug in her system, five times the safe level.

Did she overdose? Was she trying to commit suicide? It was only after she recovered that doctors were able to piece the story together.

“The culprit was grapefruit juice,” said Dr. Unni Pillai, a nephrologist in St. Louis, Mo., who treated the woman several years ago and later published a case report. “She loved grapefruit juice, and she had such a bad migraine, with nausea and vomiting, that she could not tolerate anything else.”

The previous week, she had been subsisting mainly on grapefruit juice. Then she took verapamil, one of dozens of drugs whose potency is dramatically increased if taken with grapefruit. In her case, the interaction was life-threatening.

Last month, Dr. David Bailey, a Canadian researcher who first described this interaction more than two decades ago, released an updated list of medications affected by grapefruit. There are now 85 such drugs on the market, he noted, including common cholesterol-lowering drugs, new anticancer agents, and some synthetic opiates and psychiatric drugs, as well as certain immunosuppressant medications taken by organ transplant patients, someAIDS medications, and some birth control pills andestrogen treatments. (The full list is online; your browser must be configured to handle PDF files.)

“What drove us to write this paper was the number of new drugs that have come out in the last four years,” said Dr. Bailey, a clinical pharmacologist at the Lawson Health Research Institute, who first discovered the interaction by accident in the 1990s.

How often such reactions occur, however, and how often they are triggered in people consuming regular amounts of juice is debated by scientists. Dr. Bailey believes many cases are missed because doctors don’t think to ask if patients are consuming grapefruit or grapefruit juice.

Even if such incidents are rare, Dr. Bailey argued, they are predictable and entirely avoidable. Many hospitals no longer serve juice, and some prescriptions carry stickers warning patients to avoid grapefruit.

“The bottom line is that even if the frequency is low, the consequences can be dire,” he said. “Why do we have to have a body count before we make changes?”

For 43 of the 85 drugs now on the list, consumption with grapefruit can be life-threatening, Dr. Bailey said. Many are linked to an increase in heart rhythm, known as torsade de pointes, that can lead to death. It can occur even without underlying heart disease and has been seen in patients taking certain anticancer agents, erythromycin and other anti-infective drugs, some cardiovascular drugs like quinidine, the antipsychotics lurasidone and ziprasidone, gastrointestinal agents cisapride and domperidone, and solifenacin, used to treat overactive bladders.

Taken with grapefruit, other drugs like fentanyl, oxycodone and methadone can cause fatal respiratorydepression. The interaction also can be caused by other citrus fruits, including Seville oranges, limes and pomelos; one published case report has suggested that pomegranate may increase the potency of certain drugs.

Older people may be more vulnerable, because they are more likely to be both taking medications and drinking more grapefruit juice. The body’s ability to cope with drugs also weakens with age, experts say.

Under normal circumstances, the drugs are metabolized in the gastrointestinal tract, and relatively little is absorbed, because an enzyme in the gut called CYP3A4 deactivates them. But grapefruit contains natural chemicals called furanocoumarins, that inhibit the enzyme, and without it the gut absorbs much more of a drug and blood levels rise dramatically.

For example, someone taking simvastatin (brand nameZocor) who also drinks a small 200-milliliter, or 6.7 ounces, glass of grapefruit juice once a day for three days could see blood levels of the drug triple, increasing the risk for rhabdomyolysis, a breakdown of muscle that can causekidney damage.

Estradiol and ethinyl estradiol, forms of estrogen used in oral contraceptives and hormone replacement, also interact with grapefruit juice. In one case in the journal Lancet, a 42-year-old woman taking the birth control pill Yaz developed a very serious clot that threatened her legseveral days after she started eating just one grapefruit a day, said Dr. Lucinda Grande, a physician in Lacey, Wash., and an author of the case report.

But Dr. Grande also noted that the patient had other risk factors and the circumstances were unusual. “The reason we published it as a case report was because it was so uncommon,” she said. “We need to be careful not to exaggerate this.”

Some drugs that have a narrow “therapeutic range” — where having a bit too much or too little can have serious consequences — require vigilance with regard to grapefruit, said Patrick McDonnell, clinical professor of pharmacy practice at Temple University. These include immunosuppressant agents like cyclosporine that are taken by transplant patients to prevent rejection of a donor organ, he said.

Still, Dr. McDonnell added, most patients suffering adverse reactions are consuming large amounts of grapefruit. “There’s a difference between an occasional section of grapefruit and someone drinking 16 ounces of grapefruit juice a day,” he said.

And, he cautioned, “Not all drugs in the same class respond the same way.” While some statins are affected by grapefruit, for instance, others are not.

Here is some advice from experts for grapefruit lovers:

¶ If you take oral medication of any kind, check the list to see if it interacts with grapefruit. Make sure you understand the potential side effects of an interaction; if they are life-threatening or could cause permanent injury, avoid grapefruit altogether. Some drugs, such as clopidogrel, may be less effective when taken with grapefruit.

¶ If you take one of the listed drugs a regular basis, keep in mind that you may want to avoid grapefruit, as well as pomelo, lime and marmalade. Be on the lookout for symptoms that could be side effects of the drug. If you are on statins, this could be unusual muscle soreness.

¶It is not enough to avoid taking your medicine at the same time as grapefruit. You must avoid consuming grapefruit the whole period that you are on the medication.

¶In general, it is a good idea to avoid sudden dramatic changes in diet and extreme diets that rely on a narrow group of foods. If you can’t live without grapefruit, ask your doctor if there’s an alternative drug for you.

FEBRUARY 4, 2011, 2:15 PM

An Author Escapes From Chronic Fatigue Syndrome

By TARA PARKER-POPE

Laura Hillenbrand, the best-selling author of“Seabiscuit: An American Legend,” is known for her exuberant storytelling and dynamic characters. Her newest book, “Unbroken: A World War II Story of Survival, Resilience and Redemption,” is a riveting tale of the life of an athlete and war hero, Louis Zamperini.

Ms. Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or C.F.S.

The illness, a devastating and little understood disorder, is characterized by overwhelming fatigue and various nonspecific symptoms like muscle pain, memory problems, sore throat, swollen lymph nodes, achy joints and unrefreshing sleep. I recently spoke with Ms. Hillenbrand about her latest book and why she is speaking out about the challenges of life with C.F.S. Here’s our conversation.

Q.

Why have you started talking about your illness?

A.

I had never been public about my illness at all before “Seabiscuit.” I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed. People don’t understand this illness, and the name is so misleading. I realized I had this opportunity because I was going to be getting press attention for the book. I’m going to talk about it because I can. Maybe that will save the next person from going through what I did.

Q.

Do you think it’s hard for people to understand how debilitating chronic fatigue can be?

A.

This is why I talk about it. You can’t look at me and say I’m lazy or that this is someone who wants to avoid working. The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers. I was that kind of person. I was working my tail off in college and loving it. It’s exasperating because of the name, which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb.

This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.

Q.

When did you learn you had chronic fatigue syndrome?

A.

I got it when I was 19, and I was diagnosed at 20 by the head of infectious disease at Johns Hopkins. It was the most hellish year of my life. I went from doctor to doctor. I got very thin and lost 22 pounds in a month. One doctor thought I was anorexic and lectured me about it. After my appointment he followed me to the bathroom and put his ear to the door. When my doctor at Johns Hopkins finally said, “You have a real disease,” that was an important moment for me.

Q.

What were your first symptoms?

A.

As it does in most people, it had a very sudden onset. I was an athlete and had always been healthy. I was riding in a car on my way back from spring break my sophomore year of college and felt very nauseated. I guessed it was food poisoning. I woke up a few days later, and I literally could not sit up, I was so weak. It hit me that fast. I had to drop out of school because I couldn’t make the walk to the classes.

Q.

What happened once you left school?

A.

I was bedridden the first two years. I was having fever all the time and huge lymph nodes; the reddest, rawest, terrible sore throat; typical sweats and chills like the flu, but it didn’t go away, month after month. I had the most extreme exhaustion and balance problems, strange cognitive things, trouble concentrating. I couldn’t read analog clocks anymore. I’d try to say one word and a different word would come up. I had brain fog that was terrible in 1987 and 1988, and then it started to slowly get better.

I did better until 1991, when I tried to take a road trip to Saratoga. I had a catastrophic C.F.S. crash, went into shock, and went back down to the bottom to worse than ever. Then vertigo started, and ever since the room appears to be moving around me. I feel like I’m moving all the time.

Q.

How are you now?

A.

I’m housebound now. I had a relapse while I was working on the book in 2007. I got weaker than I’ve ever been. I’ve been too weak to leave the house for two years. I only leave the house about once a month. I’m just not very strong. A lot of days I don’t get down the stairs. It’s a slow process to recovery. The book publicity is quite difficult for me. I’m not able to do that much of it. It’s taking a whole lot out of me.

Q.

It’s hard for me to imagine how you could have done the research and writing for two books during this time. How did you do it?

A.

It’s a trade-off for me. While it’s really hard to do, at the same time, I’m escaping my body, which I really want to do. I’m living someone else’s life. I get very intensely into the story, into the interviews and the research. I’m experiencing things along with my subjects. I have a freedom I don’t have in my physical life.

Writing is a godsend to me that way. Without it I wouldn’t have anything. I am completely still almost all the time. A lot of time I don’t leave the upstairs. What I have is the story I’m working on. It’s a wonderful thing for me to get out of my body for a while.

Q.

Do you think having C.F.S. influences your writing?

A.

Because my life is so silent and so still, I think I’m able to get deeper into what I’m working on. My mind is willing to get out of here and go into there. It becomes such an intense experience.

Q.

Did you always want to be a writer?

A.

At the time I got sick, I wanted to be a history professor. I was 8 years old when I went across the street from my house to a fair, and they always had a used book sale. For a quarter I bought a book called “Come On Seabiscuit.” I loved that book. It stayed with me all those years. I was sick and housebound and looking for something I could write about. I wrote an article. I was partway through it and realized there was a huge untold story.

Q.

How did you do the reporting for the book?

A.

Lots and lots of interviews, at least a hundred, and going through newspaper archives. The family of Seabiscuit’s owner sent me 30 enormous leather scrapbooks. I bought so many things on eBay — vintage things, magazines. I did many interviews with very, very old men.

Q.

Who helps you manage your life?

A.

I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.

Q.

Why did you decide to write about Louis Zamperini?

A.

Seabiscuit led me to him. My subject was one of the greatest runners in the world in the 1930s, likely to break the four-minute mile. Seabiscuit was famous at the same time. All the newspapers that covered Seabiscuit also covered Louis. I kept reading about him. When I got done with Seabiscuit, I wrote him a letter and called him, and he told me his life story. I had to write this book.

It’s the most amazing survival story. Louis was an Olympic runner who hung up his shoes and became a bombardier. He crashed in the Pacific and floated on a raft for 47 days. Sharks jumped on board to pull him off. He was attacked by a Japanese bomber. He nearly starved to death. He went through a typhoon and was captured. His captors experimented on him, enslaved him, and he was a prisoner for two years. The things that happened to him, and his defiance — it’s an amazing story.

Q.

It sounds like on some level you could relate to him.

A.

I think because of what I’m dealing with, I’m really interested in people who become trapped in extremity and have to rely on their character to pull them out of it. I’m fascinated by the struggle, and the attributes that enable people to survive these things. I want to look to them for inspiration. I think that’s why I’m drawn to it.

Louis has told me he felt I was someone who was easy to open up to because he knows I’ve suffered. With someone else, I think he might have been a little more taciturn. But he felt, “She gets it. She’s been to this place herself.”

Having to go all the way to the bottom of yourself to find the resources to survive: this is something I understand well. I understand desperation. It’s an emotion I have dealt with a thousand times in the last 24 years. You feel like you don’t know where you’re going to get the strength to go on. We’ve been to the same place in different circumstances. I’m not comparing myself to a prisoner of war, but there are common emotions that enable me to identify with him.

Q.

Do you think your writing would be different if you didn’t have this illness?

A.

I don’t remember what it’s like to feel well. I’m 43. I was 19 when I got sick. It’s a lifetime ago. It’s hard for me to imagine what I would have been as a writer without the history I have now. We’re all sitting in our particular circumstances and writing from that place.

Q.

Your personal story is so compelling. Have you thought about writing something autobiographical?

A.

My husband wants me to. I just don’t know that I want to do that. I have to spend so much time being vigilant on my body and worrying about my body and suffering. So much of my own autobiography would be about my health, and I don’t know if I want to spend my professional life thinking about that. I write to escape my circumstances.

Body willing, and if I can find a subject that compels me, I’ll keep writing. It’s a great way to touch the world, because I’m not in this world. I went out recently to the CVS drugstore for the first time, and they had these new checkout things with no person at the checkout counter. I was baffled by this. Writing is my way of communicating with the world, and I don’t have any other way to do it, so I want to keep doing it.

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