Occupy CFS

Sometimes, life just vomits in your lap. One thing after another goes wrong, and you feel like you’re juggling roaring chainsaws while pedaling a unicycle.

Or maybe that’s just me.

2013 has been challenging, to say the least. I’m fully aware that things could be much much worse, but it has been a struggle to keep my spirits (and those chainsaws) up. ME/CFS advocacy has been a whirlwind this year, from Public Citizen to the FDA meeting to becoming an FDA patient representative to monitoring the CFS Advisory Committee to researching what’s happening at NIH. All of those efforts have required time, focus and energy. And then there’s writing this blog. My goal has always been to post twice a week. I have a loooong list of posts I want to write, and I even mapped out a schedule through the end of July. On top of all that, two people in my family have faced potentially life-threatening health problems this year.

I’m not sure how much longer I can keep my balance on the unicycle with the chainsaws.

I guess everyone faces times like this, where life has gotten so crazy that you have to come up with a new approach. The threshold is lower with ME/CFS though, because stress is so toxic to our bodies and because our limitations are so severe. I simply cannot write as much as I would like, or take care of my family the way I would like. I have to keep reminding myself that I am, in fact, disabled and I can’t keep imposing full-strength expectations on myself. The best way to lower your stress is to lower your expectations.

I need to give myself a break, and catch my breath. I need to reorient. I need to rest. This blog is a high priority, but I may not manage two posts a week. I have many more requests for my time and energy than I can fulfill, so that means saying no to someone. And I have to design a sustainable way to move forward. I still haven’t learned to be patient with my limitations, and I hate confronting that part of my reality.

I guess this is just a long-winded way of saying that this is one of those times. Everybody has them. It’s tough. We get through it.

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.

For years, the Pacific Fatigue Lab at the University of the Pacific has done the best research on exercise and ME/CFS. Staci Stevens, Dr. Chris Snell, and their collaborators perfected the use of two-day cardio-pulmonary exercise testing (CPET) in people with ME/CFS. Last week, Dr. Snell announced at the FDA meeting that the University had closed the Lab but that the work will continue at new locations.

Snell and colleagues have done more research documenting abnormal CPET results in ME/CFS than anyone else in the field. Beyond documenting abnormal results, the group has also proposed physical therapy regimens based on the metabolic dysfunction revealed in the tests. The Pacific group understands ME/CFS. They do not believe we can exercise our way out of the disease, but they do recommend staying as active as possible within limitations. Stevens was the first to recommend using a heart rate monitor for pacing, and her method is still one of the best out there. When I sought my own exercise testing, I relied on the protocol devised by this group.

So why would the Lab close when it has been such a successful pioneer in this area? Dr. Snell did not elaborate at the FDA meeting, but Stevens says the answer lies in patient services. The Lab has provided exercise testing and disability evaluation to ME/CFS patients for years. I personally know several people who succeeded in disability claims because of the assessments they received in the Lab. Stevens told me that University constraints would no longer allow the Lab to provide this essential service to patients. In order to continue the disability evaluation practice, the Lab had to leave the University.

Stevens created the Workwell Foundation fifteen years ago, and it was structurally meshed with the Fatigue Lab at the University. When the decision was made to close the Lab, Workwell became the backbone of the new effort. Disability evaluation and exercise testing will now be performed in two locations: the XCEL Physical Therapy Clinic in Ripon, California and Sierra Internal Medicine in Incline Village, Nevada (Dr. Dan Peterson’s clinic). Stevens says that the relocation actually enhances the quality of care that Workwell can provide patients. Working in Dr. Peterson’s office will not only offer patients access to his expertise in ME/CFS, but patients can receive IV saline to help them recover from the CPET. That’s an option I wish I had immediate access to last year. At the XCEL clinic, patients will have access to massage therapy to help with recovery, and there is the potential for rehab services in the future. Working with the XCEL Clinic also creates the opportunity for educating rehabilitation professionals, something that Stevens has been doing for years. Stevens says that leaving the University will improve the quality of Workwell’s services because “our new partnerships bring greater diversity, more experience, enhanced services and additional professionals to help with patient care.”

Beyond the disability evaluations, Stevens says that research will continue as well. To me, this is a critical priority. Stevens, Snell and the rest of the team have done excellent work in this area and it needs to continue. Research funding has been and remains a challenge, but Workwell is pursuing grants and other funding in order to continue this research. The research team remains intact. Snell, Dr. Todd Davenport, Dr. Mark Van Ness, and others from the University of the Pacific are staying involved in Workwell. Stevens has also added a Scientific Advisory Committee to Workwell’s structure. Separating from the University may create new challenges for Workwell in terms of grant and research administration, but Stevens says that the team is committed to continuing research in this important area. Several manuscripts are in progress, and members of the team continue to speak at conferences and meetings, including Snell’s presentation at the FDA last week.

Workwell’s goal is “to facilitate an understanding of the biological basis for fatigue and provide objectively determined therapeutic interventions that will improve quality of life” for people with ME/CFS. Fee-for-service exercise testing will provide the basis for disability evaluations, and will help fund more research. Workwell will also continue to educate researchers, health care providers, and policy makers about evaluating and treating people with ME/CFS. Stevens told me that, “We have the same personnel with the same services at nicer facilities.” This change is a new chapter for Stevens and her team, and new challenges will certainly arise, but the core team remains committed to helping people with ME/CFS.

On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of my family have not seen me in a full-blown crash like this. But Claudia was right: the FDA needs to compare how patients looked at the meeting to how we look and feel afterwards. It’s not pretty. But I also know I am not the only person struggling through a crash right now, so here goes:

Here is what I looked like at the FDA Meeting on April 26th:

And here I am on the third day after the meeting:

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.

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?

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.

Sing with it with me: It’s the most challenging time of the year!

Some CFS patients I know feel like summer is the most challenging time, between the heat and kids being off school. For me, it’s the holidays. Every year, I try to adjust my expectations and scale back on what I try to do. And every year, there is at least one day that has me on the verge of sitting in a corner, rocking back and forth and muttering about glitter.

The queue of blog posts I want to write currently stands at seventeen, and some are more time-sensitive than others. There is also the FDA meeting on Ampligen this week. But in service to my efforts to pace my activities and be realistic about my capacity, I’ve decided those posts will have to wait.  I want to keep writing for you, and some of the upcoming posts are important. But I need to spend time with my family, too. And I would really like to get to New Year’s Day and not need the entire month of January to recover from the holidays.

So I hope you will be patient with me, and that you’ll come back in a few weeks when I start posting again. I wish you a joyous holiday season, and a Happy and HEALTHY New Year for us all!

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.