Insufficient Data

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.

This entry was posted in Occupying and tagged , , , , , , , , , , , , , , , . Bookmark the permalink.

21 Responses to Insufficient Data

  1. Peter Pan says:

    Anything beyond pacing seems like “no man’s land” to me – it is a shame.

    Regarding beta blockers: Alan Light has some (based on anecdotes and research) speculation that (low dose) beta blockers might help for a sub-group of CFS patients:
    As Alan Light found that a sub-group has a problem with the “Adrenergic 2A” receptor (also called Ad2A or Alpha 2A receptor), and alpha and beta receptor have some similarities and interactions, there seems to be some at least partially plausible indication that low dose beta blockers might help. If I had a trustworthy and competent doctor, a doctor who would prescribe me beta blockers yet talked honestly about the risks of beta blockers, than personally, I would consider giving it a try.

    The main CFS related risk I see with beta blockers is that one might feel better, do more, only to run into a relapse because the underlying problem hasn’t changed. But that is something one can watch out for.

  2. Sally says:

    Really good article Jennie – as always you have a clear way of seeing things. And I totally agree; where is the hard evidence supporting the various treatment protocols?

    In the mean time we have to run with the anecdotal, and with that in mind I’m going to give a follow up comment to my trials of the Fitbit One.

    Basically, having tried a HR monitor, I found it much too frustrating for daily use. Also, I thought it didn’t really give me any idea of my over all activity level for the day. And personally I think the overall energy expenditure is as important in helping me to pace, as knowing when the peaks of HR occur.

    So, I have now been using a FitBit daily for almost a month now, and find it much more user-friendly than the HR monitor, and so far it I have avoided any major symptoms.

    I am still “aware” of what I learned whilst using the HR monitor and have a good idea of activities that put my HR up – and so for the most part I try to avoid them. For example, I consciously move more slowly than I’d prefer to do. However I do allow some moments of higher HR activities, and so far – as part of an over all scheme – this has not been punished.

    I think it’s a bit like a diet in reverse: A small amount of what you fancy as part of a calorie controlled diet (or in our case daily energy expenditure restriction) will not upset the whole picture in the long run, but gives moments of pleasure in an otherwise restricted environment!

    I don’t know of anyone else with ME/CFS using a FitBit in this way, but I find it very interesting. For example – yesterday I thought I had been more “active” because I took the dogs for a 15 min “walk” (okay a slow amble) and this appeared on my daily graph of energy expenditure in orange for “fairly active”. However I also slept for 2 hours in the morning, and so my total energy expenditure for the day was lower than the previous day when I hadn’t left the house, but had pottered about during the day! It is the “pottering” that is so hard to measure IMO, and this is something the FitBit can detect well.

    The other benefit of the FitBit is it gives me an estimate for my “total daily energy expenditure” as “cals burned”. My average since starting has been 1500cals daily. I used to LOOSE weight when I went on a diet of this much!!! So, to be honest, I’m also using the Fitbit to help me keep my diet right so I don’t gain weight.

    I hope perhaps some-one out there might find this suggestion useful, because for me it has been enlightening. There is also the long term monitoring angle, where I can look back at graphs that compare things like sleep time, or activity levels over a longer period. It will also do monthly averages once I’ve accumulated enough data – which will give me some measurable way of noticing changes in my base line state……

    Again, thanks for the articles Jennie. Personally, I would be very wary of beta blockers… but that could just be me. I’m trying other things at the moment too – one being a change to a grain-free diet as recommended by Dr Myhill. I do appreciate all that you do Jennie: without your articles, I wouldn’t have tried the HR monitor and without trying it, I wouldn’t have seen how the FitBit might prove more useful to me. I feel this wee gadget has really helped me and hope you don’t mind me giving the idea a plug here.

    Best wishes,


    PS Dr Myhill has a new paper that evaluates her treatment protocols… here is her press release:
    I’ve decided send bloods away for her mito function test….

    • Jennie Spotila says:

      Sally, this is tremendous feedback! Thank you so much for taking the time to share your experiences. I love what you are saying about the FitBit and I may give that a try in the new year. I agree with you that the HR monitor is very frustrating. Having a sense of the overall energy expenditure like you describe would be much more helpful. And to have it automated is even better. For months, I have been writing down my activities and heart rates all day long. I’ve stopped doing it, and just that step made it easier to deal with the monitor! Thanks again for all this information. I found it very very helpful!

  3. Shar Childers says:

    Great post as always Jennie. It really is frustrating that there is no way to objectively track the course of this illness. Diabetes, AIDS, thyroid dysfunction, COPD, heart, kidney and liver disease all have some kind of simple test that can let the patient and Dr know how successful the chosen treatment is. We are left with nothing but trial and error. And even worse, the natural waxing/ waning of symptoms confounds even our subjective sense of the benefits of a treatment.

    I do want to chime in on the betablocker question. I take a very low dose of metoprolol. My cardiologist originally had me on 25 mg 2x daily. After several years of tweaking I now take only 12.5 mg usually just in the morning but again at night if my HR is elevated at dinnertime. I personally feel that the beta blockers combined with pacing have put me on a SLOW but steady course of improvement. Oddly, the BB improved my pain level, and cognitive problems almost immediately and my physical stamina, balance and coordination have been slower to improve.

    What I initially found was that I still could only be “active” for the same limited amount of time each day ( about 3 hours ) but I could accomplish more during that time. I started on Metoprolol 5 yrs ago and I am still quite limited but I’ve improved from having 2 rest periods a day ( Bruce Campbell’s definition ) and spending much of the remainder of the day laying down feeling horrible to no rest periods and feeling pretty decent as long as I don’t overdo it. I can be up and about for 4-6hrs and sit on the sofa with my feet up for most of the rest of the day.

    So, I just wanted to share my experience in case you were considering trying the BB. I look forward to reading more of your posts.

    • Jennie Spotila says:

      Thank you, Shar. This is really helpful. I was a little nervous about talking about this on the blog, but you and others have offered such valuable feedback and information! It’s very exciting to hear that the beta blockers helped you.

  4. Thank you so much for this article. I’ve been considering trying beta blockers because I know Sue and have followed her story, but I thought they wouldn’t help me because they won’t touch the “sickness” aspect of my illness. But it may be worth a try. I didn’t have success with the anaerobic exercise program. I don’t know why. It didn’t make me worse but it didn’t help my energy levels or improve my functioning. As you say, Jennie, we’re flapping in the wind. Sigh…but again, thanks for this valuable information and thanks to all those who commented too.

    • Jennie Spotila says:

      What would be so helpful to me is if a doctor could say “this is a reasonable expectation for this treatment.” Then I would know what to look for and how to judge if it’s working. Pain meds help pain (duh) but my doc has never expected me to be pain free. That really helped me evaluate whether a med helped enough compared to side effects. If I expected to be pain free, I would think my current meds weren’t working!

  5. Tom Kindlon says:

    This is one of reasons I strive to raise money for ME/CFS research (through direct donations & fundraising). I wish more people would help.

  6. Chris Heppner says:

    Jennie, thanks for raising and airing a real problem. Two thoughts: have you thought of trying say Carvedilol, which has some alpha blocking as well as beta? And though I sometimes take a very low dose to help damp down Premature Ventricular beats, I am not quite comofrotable with long term use–I think there are suggestions that beta blockers inhibit/damage mitochondrial function, which seems one key to this whole mess we are in.

  7. Kelly Latta says:

    Peter Pan may have nailed it – the key is subgroups. As Dr. Shepherd says arthritis patients don’t all have the same trigger and the same treatment. For example, not all patients respond to Rituximab or Ampligen. And beyond a few core symptoms such as PEM, many ME and CFS patients don’t have much in common as the comments above show.

    This could be a number of factors. If the trigger is different for each patients – say herpes virus vs. enterovirus that is going to affect the symptoms and the treatment. Some viruses target the heart and nervous system, others the gut. If it is synergistic it gets even murkier. Genetics may also play a role. Dr. Lerner recently published a paper comparing patients with EBV who did or didn’t respond to a specific anti-viral in order to tease them apart. Dr. Broderick on the other hand is using systems analysis to differentiate say between GWI and CFS.

    So we have subgroups. And that may be not be the good news although it is probably a step in the right direction. Subgroups, or even multiple diseases, under an umbrella term will further spread out the few research dollars that are available.

    Some patients argue that ME and CFS are not rare, and by the generally accepted definition of rare technically they aren’t, but what if they subgroup out into multiple subgroups as did hepatitis only think 10-12? What are the incentives for drug companies for example to develop drugs for such small populations? As noted in one of the FDA presentations, if the same symptom has say two different causes the same treatment might or might not work for both. That makes re-purposing drugs less straight forward particularly when the underlying mechanism may be unknown.

    Not trying to be discouraging, but the complexity and interconnectedness of these issues is Gordian indeed.

    • Jennie Spotila says:

      Interestingly, there are drugs developed for very small subgroups. I think the someone mentioned at the FDA webinar that there is a cystic fibrosis drug that only treats 1200 people. So maybe the same could be true for our subgroups.

  8. Christine says:


    Want to share my experiences with beta blockers with you and maybe it will help others as well. After reading Sue’s excellent blog about beta blockers I decided to talk about it with my physician. I have tachycardia, cardiomyopathy and myocarditis an of course with this all NCS(NeuroCardiogenic Syncope), a family member of POTS. I had a positive TTT, something I do not want to repeat ever again. I am in the 25% group and 90% bed bound. I constant go over my threshold. I am stubborn and refuse to listen when my body tells me that brushing my teeth and go to the kitchen to get a drink is too much. So I wanted to give Sue’s approach a try. I’m waiting for my heart rate monitor that is being released this month. I need one that is continuous not just when I turn it on. Because sometimes just turning around in bed is too much. I need that annoying beep to tell me now is not a good time and step back. I used to go on to the point that I faint and accept that as a sign I did too much. When I overdo things my heart rate goes up to 140-160. Not good. I sounded like an excellent candidate for the beta blockers.

    My dr. was all for the beta blockers and I did the research, thanks to Maija’s excellent book, Fixing The Broken Marionette comparing meds is extremely easy. I decided that Propranolol would be the best choice for me because of its’s short half life. I’m extremely med sensitive so when something isn’t right a short half life is comforting to know. My dr. also agreed on the Propranolol
    We discussed my usage and amount and decided to start below the advised amount, as usual.
    He had read about beta blocker treatment so he was familiar with it.
    I was excited. The first 2 days went well, my heart rate immediately fell and I could brush my teeth and fetch a drink! Great! The third day I took my dose, half a tablet before getting up and my heart rate shot up, I took another half and it became worse and than after 20 minutes it became ‘normal’. I didn’t think anything of it, thought it was just a glitch. However in the evening after taking my next dose my heart rate shot up and did not want to come down. Not even after the second dose. It stayed at 140 for 4 hours. At first I panicked, but than remembered the half life and decided just to hold on until it would get back to normal. ER was out of the question. That it went down after 4 hours was for me the indication that the Propranolol was the culprit. Because I didn’t do anything, just sitting on my bed ready for the night and up it went. Called my dr. next morning he told me to stop the beta blockers immediately as it seemed I’m in that group that experiences side effects as tachycardia and a high heart rate. Go figure, the side effects are the same as the symptoms.

    It was a very scary experience, almost as scary as the TTT. 😉 I was very depressed after this for weeks, I had such high hopes and now another option down the drain. My dr. encouraged me to make an appointment with a Cardiologist Consultant for a more specialized opinion and a EKG. Wich is difficult if your are mostly bed bound. I did see the Cardiologist Consultant( she only advises people and does not do any surgeries or invasive test) but that is a whole other story, I stormed!!! out of her office.

    I’m controlling my heart symptoms with homeopathy and rest and am waiting for my heart rate monitor. Beta blockers have been ruled out for me even though it seemed a perfect fit on paper, in reality it was the opposite.

    • Jennie Spotila says:

      Ugh, Christine! What a terrible thing for you to go through. I did not know that some people respond to beta blockers that way. Thanks for sharing your experience. It’s important for us to watch out for side effects like that, especially since we are so med sensitive.

  9. cfsboston says:

    There is plenty of definitive data on CFS & ME. It’s just censored.

    As for PubMed marketing, I don’t follow that.

    “It is simply no longer possible to believe much of the clinical research that is published,
    or to rely on the judgment of trusted physicians or authoritative medical guidelines.
    I take no pleasure in this conclusion, which I reached slowly and reluctantly over my
    two decades as an editor of The New England Journal of Medicine”

    Marcia Angell, “Drug companies & doctors: a story of corruption,” NY Review of Books, 56 #1, 15 Jan

    I think you should buy a shower chair; it will make life much easier. I also love my new laptop desk. Best $100 I ever spent on myself (and, as you probably can relate, I’ve wasted a lot of money on useless doctors):

    {I have no financial interest in this company.}

    Be (as) well (as possible).

  10. Chris Heppner says:

    Jennie, one more thought on all of this; it is quite true that if we had MS, or cancer, or quite a few other nasty diseases, we would get definite prescriptions and lots of treatment–but would we get better? MS has a lot more money spent on research than does ME, but the results seem virtually non-existent–those who improve, like Terry Wahls, do it by ignoring the “approved” meds and figuring out what actually helps them. Cancer statistis tell the same tale–the figures are made to look better than they really are by the decision to include DCIS as a cancer, when in reality it is a pre-cancerous condition that often does not progress–but it is almost 100% curable, so… Read Thomas Seyfried’s recent “Cancer as a Metabolic Disease” for an inside look at how far from “true evidence” cancer treatment has strayed, with some notable exceptions, it is true.
    Our condition is pretty desperate, but we are not in fact alone; modern medicine delivers less than it promises to many, many conditions. Chris

  11. Sarah LaBelle says:

    Your question is well put, and it would be great to know if using beta blockers along with the treatment program would gain the increase in daily function sooner than happens now. Is it essential to get that answer to try the program reported by Staci Stevens et al in that paper?

    Learning that I am nearly always at the peak heart rate, or walking five steps will get me there, yes, that has been a bit scary.

    If that program from the U of the Pacific group and also from Dr Klimas clinic works, can it work for me, who lives so far from either of those places? Is there anyone to give me the encouragement or wise judgment to slow down in a year’s worth of doing the program?

    At least a few people report success, meaning some meaningful increase in daily function, from the clinic run by Dr Klimas.

    Being far from both places (CA and FL) I wonder if there is useful guidance for when ordinary symptom increases happen. Keep going with the program, or step back for a week? How to get brave enough to start up again, until I start seeing those improvements and have the positive reinforcement needed to keep it up on my own?

    • Jennie Spotila says:

      First, I think if you experience an increase in symptoms you should take a break and try again. That is the best indicator of whether you are doing too much, especially in the absence of exercise testing. My understanding (and hopefully someone will correct me if I am wrong) is that Dr. Klimas does one day of testing while the Pacific Fatigue Lab does two. This is important. I had two day testing at Ithaca College, and my Day One results looked like a normal deconditioned woman. Day Two is where the difference really showed up, with a significant drop in my anaerobic threshold. It’s key because the Pacific group recommends setting the heart rate monitor to the Day Two level. This leaves a little wiggle room when the monitor goes off and I need 30 seconds to finish drying a dish or something like that.

      In terms of the importance of regular coaching from someone nearby while trying this program, I find it very challenging. I wish my local physical therapist – who is wonderful – could provide that kind of coaching but she has no more experience applying these methods than I do.

  12. I absolutely agree with the comment that the research so far performed on diagnosis of the symptoms and treatment are flimsey and anecdotal at best. This give fuel to the naysayers who say the condition is imagined.
    With this in mind we have set up the first U.S. Medical school ME/CFS Center. We will research the symptoms causing Post Exertion Malaise (PEM) as in the Canadian Consensus criteria using multidisciplinary Medical Scool departments of Internal Meicine, Immunology, Virology and Genetics. The testing is over four days including one day exercise and 3 days post exercise blood testing, some patients will not be able to perform exercise or the blood tests, this is an important fact that has been omitted in other studies, the inability to perform is significant information. Support for the research would be appreciated . Derek Enlander MD

  13. sorry for the omission The ME/CFS Center is attached to Mount Sinai Medical School in New Yrok

  14. rivka says:

    i have been on atenolol, a beta blocker, ever since Dr. Rowe came out with his theory on Neurally Mediated Hypotension. thus, i have been on that med for about 20 years. it helps a lot. that said, i’m still bedridden a lot and have bad PEM. but i’m much worse without the beta blocker.

Comments are closed.