Occupy CFS

When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most people, I withdraw when I feel lousy. The suffering that comes with the worst days of ME/CFS is not something that I have ever wanted to display in public. I originally recorded the video in order to submit it to the FDA comment docket. But after I did that, I thought maybe it was worth sharing with you because it might be similar to what other patients experience. I felt very vulnerable putting it out there, but it seemed like the right thing to do.

Wow. Just . . . Wow! Your response has been incredible, and far greater than I anticipated. The video has 893 views on YouTube as of today. There were 388 hits on the blog on Monday, rising to over 1,000 hits yesterday. You’ve been sharing it on Facebook, on the forums, on Co-Cure, on Twitter, and your own blogs. And your comments – here on the blog and on Facebook and by email – have been overwhelming in kindness and support.

I thank you from the bottom of my heart. It felt like I was taking a big risk, but you caught me when I took that leap of faith. You reminded me I am not alone, and you used my video to help teach others about this disease. Not only do I feel supported, but we’ve turned this crash into something meaningful and productive! So keep sharing the video and keep the conversation going. And please know that you have my deepest gratitude for the love and support you have given me this week.

What is there to say about something like the Boston Marathon bombing? There is no sane way to reconcile the gruesome images, the suffering and destruction with our need to believe that we are safe. We are privileged enough in this country to think that this sort of thing does not happen here. Once I confirmed that everyone I love in Boston was ok, my real-world connection to the event faded. But this morning, my mind and heart are still bound up in the news.

Being housebound makes me vulnerable in an odd way. On the one hand, I am remarkably safe in my home and neighborhood. I rarely go in to the city or to places with large crowds. But on the other hand, I am an automatic audience for big news events.  I don’t have a meeting to go to, or kids to pick up from school, or any other demands on my attention. Most of the time, it’s just me, the tv, Facebook and Twitter. If I choose to tune in, I end up vicariously experiencing these events.

I watched the Columbine shootings unfold. For a week after 9/11, I only turned off the tv to sleep. Six years ago today, I followed the Virginia Tech shootings on CNN, and I held my breath between the phone calls from my brother who was there. It has gotten to the point where I start to cry as soon as I learn about an incident like these. Sometimes I have the self-discipline to avoid the media if I think the news will be too upsetting. I stayed off Twitter and Facebook for days after the Newtown shootings, and I still have not seen any footage from that day. I long ago decided that tv news is shallow, and frequently borderline moronic, so it’s easy to avoid that. But if I pay attention – and Twitter makes that incredibly easy – I get sucked in to following every update and rumor.

Emotional shock and distress quickly induces a cascade of physical exhaustion, pain, and brain fog. The more I watch, the worse I feel. Compounding the simple stress is an overwhelming feeling of powerlessness. I am trapped in my home, alone with the images of people who need help. There is nothing I can do. I remember the despair I felt after 9/11 because I couldn’t simply drive to New York and pitch in. After the Virginia Tech shootings, my brother started volunteering for an emergency services provider. I am limited to donating to the Red Cross or knitting afghan squares. This is not a substitute for directly helping people face to face. Watching people suffer, and being unable to do anything about it, feels like sandpaper against my heart.

This morning, I’m thinking about the people who will now join the ranks of the disabled. There are reports of people who lost legs or feet. Sure, they’ll get prosthetic limbs and rehab and lots of attention. But their lives will never be the same. Perhaps there will be people disfigured by the blasts, or people who develop post-traumatic stress disorder. Some of them may have great family support and health insurance, but others may not. In the moment of the explosions, everything changed for these people. They have to run a different marathon now. This is the marathon of doctors and procedures and medication and paperwork and learning to live with a changed body. This is the marathon of people helping in the immediate aftermath and then fading away and going back to their lives. This is the marathon of answering the “how are you?” and “it could have been worse” comments. This is the marathon of the sick and injured.

I don’t know what it’s like to be the victim of any crime, let alone a crime like this. But I do know about suffering and endurance and navigating a changed life. The real crisis is not the moment of explosion. It’s everything that comes after. I know a little bit about that marathon, and I wish I could help other people on that path. But my own marathon keeps me imprisoned, acutely aware that others are suffering and completely unable to help them.

We’ve all had the experience of someone saying the wrong thing to us about our disease.

“I hate that you always cancel at the last minute.”

“You rest all day. Can’t you make dinner once in awhile?”

“Work is killing me. I am so exhausted!”

If you have ever been on the receiving end of a comment like that (or have made a comment like that to someone else), let me introduce you to the Ring Theory.

Write your name on a piece of paper and draw a small circle around it. Draw a larger circle around the first and write in the name of the person who is closest to you – your spouse or partner, a sibling, etc. Repeat this process, drawing increasingly larger circles and filling in the names of people based on how emotionally close they are to you. So after your spouse, maybe a best friend or parent is next closest. Trusted friends should be closer than work colleagues; your favorite aunt might be closer than your brothers.

Now apply a simple rule: people can only complain to those who are in larger circles. Ring Theory says that complaints, moaning, despair, criticism, and negativity should flow only from smaller circles towards larger circles. There’s nothing wrong with expressing negative or difficult feelings, as long as you direct that at someone in a larger ring. You, as the sick person in the center, can whine to anyone you want in the other circles. Your best friend can complain to your work buddy. But negativity should never flow towards the smaller circles. Your old roommate should not give unsolicited advice about your medical care to your spouse. Only comfort and support should flow from larger circles to smaller ones. Offers of help, sympathetic listening, and understanding should be offered to those closer to the center of the circle, and especially to the person at the very center.

The one problem I see with Ring Theory is that it seems to be designed for acute crises – whether illness or trauma or other acute events. For those of us with chronic illnesses or permanent disability, I’m not sure that the “comfort in, dump out” should always apply. For example, I want and need my husband to share with me how hard my illness is for him. I can’t be the center of attention all the time. Sometimes, my husband needs my support to deal with the impact of ME/CFS on our lives. The same is true for my closest friends and family. Part of what motivates me to cope with ME/CFS the best I can is to make things easier for the people I love.

Overall, the Ring Theory is great advice for all of us. No matter what the crisis may be – illness, death, unemployment, trauma – remember to keep comfort flowing towards the center of the circle, and keep negativity flowing away from the center. It may be one of the best ways you can help, and be helped in return.

Two weeks ago, NPR published a story about the rise in Social Security disability claims. The bottom line of the story is that unemployed people are choosing to go on SSDI because they have conditions that prevent them from doing physical labor and are not educated or qualified enough for desk jobs. According to this story, Social Security “has also become a de facto welfare program for people without a lot of education or job skills.” This is a legitimate issue, but there was plenty to object to in the story and I fired off an email to NPR. Since then, criticism of the story has skyrocketed, and NPR’s minor revisions of the story have not stemmed the tide. Others have done great analyses of the story and its many errors, and a coalition of disability rights advocates sent a terrific letter to NPR (pdf link).  Personally, I’m focused on a few comments by reporter Chana Joffe-Walt and the stereotypes those comments reinforce.

Joffe-Walt says that disability with Medicare could be a better deal than a minimum wage job with no healthcare. In the original version of the story, she said “it’s a deal 14 million Americans have chosen for themselves.” NPR has since revised the online text to read, “it’s a deal 14 million Americans have signed up for.” This is a distinction without a difference. Whether you use the verb “choose” or “sign up,” this is a statement that everyone on SSDI is there voluntarily. It’s the stereotype that disabled people are lazy slackers happy to live on the government dime.

I have a problem with that. I was forced to apply for, and now collect, Social Security disability. This was not anything that I chose. I got sick, I could not work, I applied for disability. And I hate collecting disability benefits. I would much rather be working, even if I couldn’t go back to the career I originally trained for and pursued. Furthermore, Joffe-Walt makes it sound like it’s easy to get SSDI. I don’t know if she actually investigated application and approval rates, but SSDI is not easy to obtain. I was denied twice, and finally succeeded after an ALJ hearing. The process took three years to complete. I know people who have spent even longer in the disability application process, and many have no other source of income during the long fight.

Joffe-Walt also points out, “Once people go onto disability, they almost never go back to work.” Gee, I don’t know, maybe because they’re disabled? Social Security requires that an applicant be disabled for at least a year, and unlikely to return to work, in order to qualify. Furthermore, the rigorous application and review process, and the years-long process of denial and appeal, would weed out all those able to return to work within a year or two of the illness or injury. Those of us who end up collecting benefits likely suffer from permanent or near-permanent disability, meaning that we will never return to work no matter how much we desire to do so.

The economics of disability is a worthwhile and complex subject. But of all the issues NPR could have covered – the cost of lost productivity, the plight of disabled people who cannot get benefits, the people who continue to work while being disabled, employment discrimination, the challenges of having invisible disabilities – of all these issues, NPR chose to focus on the slacker angle. The they’re-technically-disabled-but-have-chosen-to-exploit-the-system angle. Really, NPR? It’s like covering the economic impact of Hurricane Sandy by reporting on people who pad their losses in order to collect more insurance. Yes, it happens, but the most significant issues are more complex than the tired stereotype of people trying to collect money they do not deserve.

After the American Academy of Family Practitioners published an article on CFS in October 2012, Dr. Lucinda Bateman and I submitted a Letter to the Editor. Today, that letter was published and the full version is free online. There is also a reply from Dr. Yancey, one of the authors of the original article.

My original analysis of the article covers the methodology and the overemphasis, in my opinion, of psychological factors in CFS. In his reply, Dr. Yancey cites the PACE trial as providing evidence that CBT and GET provide “moderate benefit” to people with CFS. But since the PACE trial was published in 2011, numerous authors have documented a multitude of problems with the study design and data analysis, including this one from the CFIDS Association (pdf link).

I fear that the PACE trial will continue to dog our steps until better data are published. This is why the FDA meeting is so important, and why you should participate to the fullest extent of your ability.

Edited to add: Links to some other analyses of the PACE trial can be found here.

I recently read Spillover by David Quammen, a book about human diseases that originate in animals. ME/CFS is not mentioned in the book, but a passage about the origin of HIV struck very close to home.

Quammen describes how HIV originated in primates in Africa in the very early 20th century. Researchers used tissue samples from the 1950s in the Congo to trace its early spread. Quammen visited the University of Kinshasa, Democratic Republic of the Congo, where those samples had been stored. In the absence of freezers and other equipment, samples were preserved in paraffin. Quammen describes the process of preservation: a tissue sample from a lymph node or other organ is dipped in successive baths of methanol, drawing out the water from the sample. The last bath is xylol to draw out the methanol. The dessicated specimen is then encased in paraffin to preserve it for storage. Quammen describes the storage area:

At the far end of the lab was another doorway, this one hung with a blue curtain. Professor Kabongo pushed the curtain aside and I followed him into a specimen pantry, narrow and tight, lined with shelves and cabinets along one side. The shelves and cabinets contained thousands of dusty paraffin blocks and old microscope slides. The paraffin blocks were in stacks and cartons, some of the cartons dated and some not. It appeared to be organized chaos. Spillover by David Quammen, p. 411-412.

The image of thousands of samples piled here and there, forgotten and left to collect dust in a hospital of a poor country, reminded me of ME/CFS.  One million patients: ignored, forgotten, and left to moulder on a shelf until one day – hopefully – a researcher comes looking for clues. That’s how I feel as an ME/CFS patient. I’ve gone through successive baths of major setbacks and treatment attempts that failed, and each one leached more life out of me. Instead of water removed by methanol, it is life and hope that is drawn out of patients, over and over and over. At some point, most of us shift from expecting to recover to simply waiting. We are like those paraffin-encased samples: inert, out of sight, unimportant. I see the room of dusty shelves of one million patients waiting for something to change. Each sample is a life frozen in time, enduring year upon year of exile.

I think this is what drives some of us to take drastic measures. We lash out at the government, we contemplate suicide, we scream and stamp our feet and wave our arms. We cannot accept personal and scientific abandonment. We will do ANYTHING to get off that dusty shelf. It is hard to understand the fury if you have never been left on a shelf to wither and die, but it is also true that fury can overwhelm and carry us away. We don’t always manage to target our efforts strategically. It looks crazy. Sometimes it IS crazy.

But ME/CFS patients have to choose: Will I endure a silent existence on a forgotten shelf, gathering dust until I die? Or will I channel the spark of rage and knock the shelf down?

Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication Activity (PCOCA) efforts. Dr. Nancy Klimas and Dr. Connie Sol presented their exercise advice for people with ME/CFS. I’ve seen some sharp criticism of the presentation, so I thought it would be helpful to compare their advice to the recommendations from Dr. Christopher Snell’s group at the Pacific Fatigue Lab. Dr. Snell and his collaborators (Staci Stevens, Todd Davenport, Mark Van Ness) have done the most work on exercise capacity in CFS, and published a conceptual model for safe exercise in 2010. You can learn more about their work in this webinar they gave last year.

Why Do It?

It’s common knowledge that exercise is an important part of preventing heart disease, diabetes, and osteoporosis. And I think most CFS patients would be eager to exercise if it did not make us sick. On Monday, Dr. Klimas said that deconditioning explains much of the dysautonomia seen in CFS. I think she may have overstated it because there are physically fit people who develop POTS, NMH or other orthostatic conditions, but deconditioning certainly wouldn’t help. Dr. Klimas described herself as the “perfect advocate to talk about exercise” because of her decades of research and clinical experience focused on biomarkers and immune function. She does not believe exercise is the only possible treatment for the disease (unlike proponents of the psychosocial model), but she also does not think it should be ignored.

I should note that while Drs. Klimas and Sol use exercise to provoke PEM so they can measure the gene expression cascade that follows, they have published no papers on exercise physiology in CFS. Snell and his group have published multiple papers on the topic, including a study that shows deconditioning is not the cause of PEM. Despite showing that there is metabolic dysfunction unique to CFS, Snell and many other experts recommend being as active as is safely tolerated. Stronger muscles will lead to less pain. Being as physical fit as possible will improve our chances with heart disease and other long-term consequences. If we can safely tolerate a certain kind or level of activity, we should do it. The emphasis must be on the word SAFE, and activity should be tailored to each individual patient’s capacity.

Identifying a Target Heart Rate

My articles on PEM and exercise explain the body’s energy systems and the importance of heart rate in detail. For purposes of this post, I can say that both Klimas and Snell agree that heart rate at the anaerobic threshold is the limit for safe activity in CFS. So how do we identify the correct heart rate?

Dr. Sol uses a single test in which the patient exercises to exhaustion. Multiple measurements help identify the heart rate at the anaerobic threshold, and then that heart rate is used to design an individualized exercise protocol. Dr. Snell and Staci Stevens use a two day maximum exercise test to do the same thing. That second test is critical because CFS patients’ metabolic function declines significantly after the first test. In my own case, my heart rate at the anaerobic threshold went from 105 on day one to 95 on day two. Under Sol’s system, 105 beats per minute would be my maximum heart rate, but that would be too high on any day that I was not well rested. My personal view is that by skipping the second test, Sol and Klimas are at risk for setting the safety limits too high for most patients.

Not everyone can take a two-day exercise test (for a variety of reasons), so there is a simple calculation for guessing at your heart rate at the AT. Klimas and Sol recommended: 220 minus your age times 60%. In my case, (220 – 44) x 60% = 105.6 bpm (matching my AT on day one).  Stevens recommends 50%, or (220 – 44) x 50% = 88bpm (lower than my AT on day two). Here’s the problem with the calculation: a bedridden patient would not have the same limit as me (housebound) or a friend of mine (who can leave the house every day). We’re all sick with CFS; we all have metabolic dysfunction. But it’s unlikely that our heart rate limits are identical.  Patients must be cautioned that the calculation is a guess only; careful experimentation is necessary to establish your safe level.

Defining Safe Activity

Both Sol and Stevens agree that the safe level of activity is the level that does not produce symptoms. Dr. Sol said that she knows she has prescribed the right level of activity when the patient reports that he/she feels no difference. Stevens has said that any symptom flare that lasts more than a few hours is too much and that activity must be scaled back.

What qualifies as exercise? Both Sol and Stevens agree that activities of daily living should be seen as exercise. The effort required to cook a meal or shower can raise your heart rate too high, and may need to by modified to stay in the safe zone. They both agree patients should examine the activities that make them tired, and try to adapt and pace those activities. Dr. Klimas said that these methods will lead to a more even, reliable supply of energy; Dr. Snell has said the same thing.

Beyond activities of daily living, Sol suggested yoga or non-weight bearing activities such as water exercises. She recommended starting with a minute or two of activity followed by a few minutes of rest, repeated five times once a week to start. In contrast, Stevens recommends a more modest starting point of stretching and range of motion exercises. Patients should advance to low intensity, short duration activity only if the stretching is well tolerated. For Snell and Stevens, heart rate is not the only indicator of capacity. Patients must pay attention to their perceived level of effort, and avoid activities (or activity duration) that feels “somewhat hard.”

Severely Ill

There is no question that there are CFS patients who are too sick to come to a lab and pedal a bike for eight minutes. Accordingly, these patients have not been studied for metabolic dysfunction and exercise capacity. Drs. Klimas and Sol made no comment on Monday about what these patients could or should do. I interviewed Staci Stevens as part of the research for my article on exercise, and based on her advice I wrote:

A bed bound patient may need assistance to turn in bed or complete basic activities such as showering, but heart rate biofeedback can help identify the appropriate pace and duration of these activities. Bed bound patients can also try deep diaphragmatic breathing, perhaps six deep breaths at a time. Deep breathing will lower heart rate, and also work the large muscles of the diaphragm. Severely ill patients might begin with passive stretching, where a physical therapist or caregiver moves the patient’s limbs slowly and carefully to gently stretch muscles and try to improve flexibility.

This must be done very cautiously. There is simply no published data that investigates the metabolic dysfunction in bedridden CFS patients or that explains what they can do safely. The cost of trial and error can be high, so patients should be very careful.

Expectations

Reasonable and realistic expectations are an important part of any rehabilitation effort. Snell and his group describe the goal as being as active as possible within toleration, and hopefully this will lead to a more predictable energy supply (eliminating the push-crash cycle). In contrast, Dr. Klimas said on Monday that patients will show improvement if they follow the program, and that when they stay below the AT they feel “much better.” Then Dr. Klimas claimed that some patients have been able to return to work or athletics. This is an extraordinary claim, especially in the absence of published data. How impaired were these patients to start with? How long did they follow the program, and was the program standardized across patients? Did these patients show objective improvement on subsequent exercise testing? How long did their improvement last?

Personally, I was very surprised to hear Dr. Klimas make this claim. She is quite familiar with the severity of the disease, the dearth of treatments, and the danger of false hope. In my opinion, claiming that pacing with a heart rate monitor and slowly progressing exercise is curative in the absence of published data is misleading, at best. The notion that exercise will make us all better is pervasive and potentially harmful to patients. Show me the data.

The Comparison

There are many similarities between the advice of Klimas and Sol on the one hand and Snell and Stevens on the other. Both sides agree that patients should be as active as they can safely tolerate. They agree that activities of daily living should be seen as exercise. Both recommend using a heart rate monitor to pace activity by staying under the anaerobic threshold. Both recommend starting very slow with exercise, and avoiding exercise that increases symptoms.

There are also some differences. The two groups calculate the safe zone differently, with Klimas and Sol potentially setting limits higher than patients’ anaerobic thresholds. Klimas and Sol offered no advice to bedridden or other severely incapacitated patients, while Snell and Stevens offer at least a little guidance. Finally, Snell and Stevens do not suggest that their program is curative in any way. They suggest a cautious but realistic goal of eliminating the push-crash cycle. In contrast, Dr. Klimas was quite expansive in her claim that her program had helped some patients return to work.

Despite their differences, both groups give the same basic advice to CFS patients: use a heart rate monitor to help you recognize when you are doing too much; ensure adequate rest; be as active as you can without triggering symptom flares or post-exertional malaise. This is a good starting point, but I hope that one day we will have access to physical therapists and others trained to help us navigate these limits. From my own experience, trying to apply this expert advice on my own has been unnecessarily frustrating.

This is not the day I planned to come back from my holiday hiatus, nor is this the post I planned for the beginning of a new year. But as they say: “The best laid plans of mice and men often go astray.”

I made it through the holidays pretty well. One final family event was beyond my capacity, and my husband proceeded to come down with a sinus infection during his time off, but compared to previous years I was doing alright in early January. I gave myself extra days of rest, and I made some fabulous lists of things that either need doing or that I want to accomplish. I felt like I had a handle on things. Which, of course, is the signal in my personal universe for the wheels to come off the cart.

I got a norovirus.

Or something like a norovirus. Stomach bug, food poisoning, stomach flu, whatever. The acute symptoms lasted about 24 hours, and my gut took another four days to normalize. But it’s the fatigue to the point of prostration that kicked my butt. For about a week, I was sleeping ten hours at night and another three to five hours during the day. And the time I was awake, I spent staring out the window or watching tv. The first sign of improvement was when I started to stress about everything on those lovely lists I had made the week before. I’m sleeping a little less now, and writing this post, so I guess things are looking up.

It amazes me that even after more than 18 years of this disease, “fatigue” can still take me by surprise. Fatigue is such an inadequate word to describe the experience. And as most patients know, even the small systemic disruption caused by a common virus has an enormous negative impact on our body systems. I seem to be strongly resistant to upper respiratory viruses, almost never catching my husband’s colds. But we are the reverse when it comes to gastroenteritis – he never gets it and I do.

If the severe fatigue cleared up after a few days, it wouldn’t be so bad. But as it stretches into week two, I get more anxious. Will I get back to baseline? Will this acute illness cause a permanent worsening of my activity? How will we cope if I become more disabled? How will I endure day after day of sleep and misery? So far, I’ve been lucky. I always return to baseline, even though it can take weeks. And I have learned (the hard way) to listen to my body when it screams “SLEEP!”

So Happy Freaking New Year. I hope this is not an omen for how the year will go. And I hope I’ll be back to baseline and resuming my planned activities and blog posts very soon.

I graduated with honors from an Ivy League law school, and it was largely made possible by coffee. There was a Cinnabon right around the corner, so most mornings I picked up a ginormous vat large cup to get the day going. I mean, how else do you fuel an 11-hour study session? Coffee got me through the bar exam, and then carried me through a six week road trip. One of the best memories I have of that trip is laughing with a best friend over The Worst Cup of Coffee In The World. No, really. The coffee at the Conoco in Sandpoint, Idaho was the worst, and we gave it the official designation it deserved. Buying the first cup of coffee of the day on my way to work was my treat for being in the office by 7am, and on the weekends it was an integral part of pretending to be a writer.

Then I got sick. Still loved coffee but it stopped loving me. First I gave up regular for decaf. Then I gave it up altogether, except for occasional indulgences, because it had such a vicious effect on my gut. My coffee pot was pushed farther and farther back in the cabinet. I drank tea, but even that became touch and go after awhile. Giving up tea or coffee sounds like such a small thing. Compared to losing my career or the ability to drive, being unable to drink coffee sounds so insignificant. But to me, losing coffee was one of a thousand paper cuts. On its own, it means very little but along with everything else I’ve lost or been forced to give up? It was insulting. I know I can’t work, but I can’t even drink coffee? Come on!

I found some treatments that dramatically improved my gut symptoms. As my gut improved, I started to wonder if any of my dietary restrictions were now obsolete. First, I added back tea. Then a cup of coffee, just as a test. No problems. So in a fit of optimistic insanity, I had coffee three days in a row. I know, right? And it was fine. FINE!

And just like that, I got coffee back. I know many people recommend that CFS patients avoid caffeine (and a host of other things). I also know at least one CFS patient who is able to take care of her teenaged sons only through the power of coffee. For me, it’s about being able to drink the beverage I associate with productivity, long road trips, friendship, and writing. It’s about having that piece of my normal back in my life.

This morning, I made half a pot of coffee. I filled my cup and went to carry it upstairs to bed so I could work on this post. And it bothered me that there was coffee left in the pot that I was 50% likely to leave unconsumed because I would not want to use the energy to go back to the kitchen, refill my cup, and carry it back up the stairs. Sometimes I make it back for that second cup, sometimes I don’t. What a waste.

And then it hit me in a flash of clarity that made me feel brilliant and stupid at the same time. We have insulated travel mugs in this house. DUH! So I fished one out of the cabinet, and poured the second cup in there. Thus armed, I carried both cups upstairs to bed. No wasted coffee, and my second cup would stay warm until I was ready for it.

It’s only taken me 18 years to figure this out.

One of the most frustrating aspects of coping with CFS is the lack of definitive data. A PubMed search for “chronic fatigue syndrome” yields 4,877 results (as of today), but as a patient on the front lines I have to make treatment decisions based on theory, supposition, and anecdotal evidence.

Case in point: I’m wearing a heart rate monitor and reducing my activity to stay below my anaerobic threshold based on a few studies that show CFS patients have disruptions in their energy metabolism. There is even a published case study showing that following this pacing method and short duration exercise leads to improvement in functional capacity and activity recovery. But because my anaerobic threshold is so low, I exceed my heart rate limit just by climbing 12 steps. An expert advised me to reduce my activity to stay below the heart rate limit, even if it meant stopping halfway up the steps to rest or using a shower chair. Another expert endorsed the use of beta blockers to lower my heart rate. That topic is worthy of a separate post, but there are patients who have benefited from this approach. Sue Jackson has written excellent posts about her experience doing just that, and she credits beta blockers with drastically improving her functional capacity. When I asked the first expert about beta blockers, the expert responded that beta blockers would not change my actual anaerobic threshold but would mask when I was exceeding my limit by lowering my heart rate.

So how do I decide what to do? Expert One advises significantly reducing my activity to obey the heart rate limit, and not using medication to lower the heart rate. Expert Two advises using the medication to lower heart rate in order to increase my activity levels. There is no research that definitively answers this question. There have been no case control studies or systematic long-term follow up. Both experts can support their theories with anecdotal patient data. Both experts can support their theories with sound reasoning. There is simply no data that answers the question: which method is better for my health?

Large treatment trials, longitudinal studies, and sophisticated research into etiology and disease course drive treatment decisions for many diseases and conditions. If I had breast cancer, detailed analysis of the tumor would tell my doctor which chemotherapy regimen to use and for how long. If I had a broken hip and a heart condition, a physical therapist would be able to prescribe a rehab program suitable for both conditions. If I was HIV positive, triple therapy would be prescribed and tightly monitored to make frequent adjustments.

But those of us with CFS are left flapping in the wind. I think even the best CFS expert doctors in the country would acknowledge that treating people with CFS involves a lot of trial and error, educated guesses, and fine-tuning. The CFIDS Association recently stated that CFS patients on Patients Like Me report trying over 800 different treatments. This is insane! It’s like throwing spaghetti at the wall to see how much will stick.

Making CFS treatment decisions should be like playing sudoku – there might be some trial and error, but there is inherent logic to the puzzle. Instead, making these decisions feels like the Sunday New York Times crossword on steroids, with incomprehensible clues and multiple right answers. No one can get all the right answers based on insufficient data. Should I take the beta-blockers, or should I buy a shower chair? Your guess is as good as mine. Literally.