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.
Thank you Jennie for an excellent round up of information….
Pacing is one of the hardest things – and we all need reminding of the importance of taking it easy, both in the duration and the intensity of the exertion we allow into our lives.
I’m working on keeping my activities slow and gentle and of limited duration…. However, I think I need to wear my HR monitor again to remind me which activities raise my HR.
However, I feel I’m just marking time and certainly not managing to improve. I guess so long as I can curtail any decline, then I’m winning.
And knowledge is power – & your articles are great at getting the important info across. Much appreciated. Keep well Jennie! 🙂
Excellent comparison and analysis, Jennie.
I agree it is clear that the Pacific Fatigue Lab researchers and clinicians (Staci Stevens, Chris Snell, Mark Van Ness, and Todd Davenport) are the acknowledged experts in the field of exercise physiology for patients with ME/CFS for all the reasons you described in your post. I highly respect Nancy Klimas for her brilliance as an immunologist, clinician, advocate and for everything she is doing and has done for ME patients for decades, but for the absolute best in exercise advice, backed by extensive research, you’ve got to go to the gold standard, Staci Stevens and her colleagues at the Pacific Fatigue Lab. It’s the logical choice. And the CDC should have done this for their conference call. I was mystified by their choice of speakers on this particular subject even before the call began.
A few additional points to consider:
(1) Wearing a HR monitor and staying under the anaerobic threshold (AT) is critical, but there is a second piece that is also critical: activity duration of aerobic exercise (that includes **sitting** for more than 5 minutes!).
a. For the best explanation of this important concept, see Staci’s 23 minute presentation “Effective Management of Activity Intolerance at the 2011 IACFS/ME conference in Ottawa (http://www.mefmaction.com/index.php?option=com_seyret&Itemid=78&task=videodirectlink&id=115). You can forward to minute 4:00 through minute 10:00. Staci describes what happened to a patient who self-administered her own, lengthy, walking program (aka aerobic activity). The key is that **even though she stayed under AT**, ignoring the activity duration component caused her to become MORE functionally disabled than before, as revealed objectively by a follow-up CPET. Right after this segment, Staci then goes on to describe the 2 energy systems (anaerobic and aerobic), activity duration and how this impacts our impaired aerobic systems.
b. To better understand these 2 energy systems, the Conceptual Model paper you linked to (page 9, Figure 2) is excellent.
(2) A 2-day CPET is the ONLY way to precisely determine a person’s heart rate at AT: the magic number. To ESTIMATE it, continuously wear a HR monitor and compare your level of exertion to the Borg scale (your ‘The “E” Word’ article you linked to in your post). If you rate your exertion while doing an activity as too hard, you’re likely over your AT.
(3) Regarding your excellent point about the “unnecessarily frustrating” experience of trying to apply this exert advice on your own, the best thing for patients to do is to take the “Conceptual Model…” paper you linked to in your post, and give it to their physiotherapist (if they have one) to read. THEN we need to advocate (along with everything else that needs advocacy) for government healthcare funding for PFL to train physiotherapists how to administer their model to ME/CFS patients.
Excellent input. Thanks for linking to Staci’s presentation at the IACFS/ME conference; I had forgotten about that.
Is there any practitioner that can help? The fatigue is so overwhelming at times I feel like I don’t have a life. I need to go back to work but how can I unless I get some help.
Carrie, you might want to take a look at the conceptual model paper I linked to and seeing if a physical therapist can work with you on that. It’s a place to start. The most important thing, that really cannot be overemphasized, is to stay below your AT by using a heart rate monitor. It won’t make fatigue go away, but it will give you a place to start and hopefully reduce other symptoms. I found my pain has decreased since I started using it.
Thank you Jenni, this post is really clear and useful. It seems a shame Dr Klimas seems to be veering towards GET though. I agree trying to navigate safe limits and monitor health whilst trying to work on a daily/ weekly scheme is exhausting. I am my 15 yr old daughters carer and we both feel exhausted navigators!
Thanks again Lou
… continued from Comment#2:
Another useful document to give to a physiotherapist is the IACFS/ME’s “A Primer for Clinical Practitioners”, now also available on guidelines.gov (http://www.guidelines.gov/content.aspx?id=38316&search=chronic+fatigue).
See pages 20-22 for exercise guidelines.
Staci Stevens is a co-author of the primer, as well as Vice President of the IACFS/ME.
I believe that exercise is the major desire ofall the ME/cfs individuals I communicate with. Is if the focus ison the core causes of the neurological malfunctions then excerise will become a non issue. We would be back to running our marathons, winning tournaments and loving every moment we have with our friends and families. Treating a symptom is palliative when the primary signs of the disease is some type of short in the communication that makes the muscles, brain and spinal cord no longer respond the way they did pre-disease. I was unable to listen in on the discussion on Monday, so perhaps I don’t have a right to interject my opinion. If a recording is available I would like to know how to access it? However, my impression regarding the set up of this discussion was more of an attempt to redeem Dr. Unger and the CDC CFSAC’s representation followinf the dismal performance with the negative Ampligen vote with the FDA? This is an I teresring comarisson on the exercise protocals with the leading providers of our health care. Thanks for the analysis. Can anyone refer my to the type of heart rate monitors people us?
Molly, this is the type of monitor I use. The strap goes around your chest and the watch reports your heart rate. Make sure you get a model that allows you to program an alarm to go off when you go above your target heart rate.
The call was recorded, but I’m not sure when it will be made available. They promised a summary within a few weeks. I don’t remember when the agenda was announced. Everything from mid-December is a blur in my memory, so I don’t recall if Klimas was announced before or after the Ampligen meeting. To be fair though, Unger voted with the majority at the Ampligen meeting.
Jennie, you’ve hit the ball out of the park again. This is an excellent article about a timely topic.
It’s hard to know where one’s limits are, and as you so wisely pointed out, those who are housebound and at varying levels of being bedbound have no access to objective testing so a) are not represented in the groups studied, and b) cannot easily determine what level of activity can reasonably be done. For so many, ADLs alone are too taxing and adding exercise to an already-compromised range of activity is difficult or even impossible.
We are all bombarded with advice and warnings about the dangers of leading sedentary lives. Knowing, or guessing, our limits but in many cases being incapable of even basic activities of daily living puts us in a quandary, increasing both the fear associated with increasing exercise and the resulting relapse risk, and the fear associated with our inability to exercise as an attempt to mitigate the likelihood of developing the myriad disorders associated with lack of activity.
Thank you for this thorough comparison of approaches and for pointing out the shortcomings of generalizing the reported responses of a group of patients to any one individual. Establishing one’s optimal heart rate and optimal activity level remain largely hit-or-miss in the absence of individual testing and guidance.
Jennie,
I agree with all the comments that your article is really outstanding! I listened to the Klimas and SOL presentation, also, and it intrigued me, but I had so many questions about it. Your summary was excellent!
I’ve had CFS for many years, and I have improved so much that I can walk (OK, stroll very slowly) around the mall, cook for a couple of hours, and do most things a normal person can do, except heavy housework like vacuuming or cleaning the shower. I even lift weights at the gym with my husband two or three times each week. I feel quite healthy compared to my earlier years. I think the weight training has helped me a lot. But still I cannot walk briskly for 5 minutes without extreme PEM. It’s very, very frustrating. I have tried so many times to gain aerobic capacity, and every time I have failed. I tried the Klimas/SOL technique of walking for 3 minutes, resting 3 minutes (3 times). I used the heart rate monitor and kept my pulse at 88-92 (my 60% is 96). It was awful. I cannot imagine what this would do a much sicker person than me!
I read the Bruce Campbell article about increasing 1% a month. If I could walk for 3 minutes, which apparently I cannot, and increase 1% a month, then after a year would I be able to walk for 4 minutes? If I could only walk for 1 minute – what is 1% of 1 minute, anyway?
Thank you so much for your discussion on this subject. I wish the researchers could untangle this mess and provide us with a prescription or formula that would actually work.
I look forward to reading your blog!
You really capture the frustration we all feel, Kathy! I’m not surprised that strength training has helped you. It may be a major factor in your improvement.
Regarding your walking, Snell and Stevens believe that our aerobic energy system is broken. They suspect we can’t expand our aerobic capacity very well at all. This is significantly different from what Sol said. Your experience (and mine) makes me suspect that Snell is right on this point.
Have you tried walking for 1 minute, resting for 2 or 3 minutes and then repeating once? Snell and Steven recommend very very short exercise intervals to avoid engaging the aerobic system too much. I am very curious about whether that would work for you.
@Jennie Spotila
Jennie,
I’m with you on the Snell and Stevens theory! I guess it’s so counter to the ‘normal’ adaptive nature of the human body that most scientists (and doctors) just can’t accept it.
No, I have not tried 1 minute of walking. I will give that a try when I recover from the relapse that has lasted a month so far (I tried being a tourist for a weekend). I’ll let you know if it works!
Thanks for the suggestion!
What a wonderful article! I really appreciate the work that you put into this. It explains the issues so clearly.
Although I agree that exercise is by no means a cure for this illness I do believe that appropriate movement will contribute to our health and quality of life. ‘Exercise’ is a really important part of my daily rountine but what that means varies considerably according to my enegy levels each day. One of the problems in the debate about exercise is what people mean by it. We have to let go of our old notions of what the word exercise means (running? the gym? aerobics etc) and redefine it as something that involves moving and stretching our muscles, encouraging healthy circulation but without demanding the use of more energy than we actually have available to us!
I think the biggest challenge for all of us is assessing how much energy we do have available to us, especially as that will change from day to day. I use effort as an important marker and aim to avoid effort at all times.
I completely agree about redefining exercise. I also agree that avoiding effort is the best way to go. The problem is that if I truly did that, I wouldn’t write this blog or do any of my advocacy work or . . . . you get the idea. Balance is the elusive key!
Wow – excellent and in-depth analysis as usual, Jennie! I didn’t actually hear the conference but have been disturbed by some of the virulent backlash against Dr. Klimas. I hadn’t heard before that she was claiming full recovery – I agree, that is disturbing (and highly unlikely!).
I was interested by your explanation of how Snell, et al calculate Day 2 AT separately from Day 1 AT. For me, that sounds interesting theoretically (and very important for proving the importance of PEM in CFS), but not of much use in real life. If I overdo on Day 1 and have any crash symptoms at all the next day, then I know I need to rest completely. I would never try any kind of exercise if any PEM symptoms were present. I do do some gentle lying-down yoga on those days – my heart rate stays very low and the gentle stretching seems to help the aches.
I agree with what you’ve said here about deconditioning. There is no way that deconditioning could cause PEM on its own because PEM was present at the very start of my CFS, when I was in excellent physical shape. And we know that OI is not just deconditioning because it is caused mainly by autonomic nervous system dysfunction which comes from endocrine and immune dysfunction – it’s all a tangled web of causes and effects!
The good side of all this controversy is, of course, that at least people are talking about PEM!
Thank you – as always – for your clear and precise explanation!
I think the importance of day 2 is in identifying the right heart rate for the alarm. If I set my alarm for 105 (day 1 level) and relied on that to tell me when to rest, I think it might be too high. I might trigger PEM despite obeying the alarm. Staci Stevens recommends being very conservative, and therefore uses the day 2 number. This makes sense to me because it gives me a little wiggle room. If my alarm goes off while I’m unloading the dishwasher, I can usually finish the rack and then sit. If my alarm was set for 105, I think I would have to be even stricter about stopping the instant the alarm sounded.
It’s very unfortunate that Dr. Klimas and her exercise physiologist chose to ignore severely ill patients. Their recommendations, with the CDC’s stamp of approval, have the potential to do great harm.
I’ve gone years at a time unable to leave my home, even to see a doctor. The idea that I could somehow get to a pool, let alone exercise in water, is laughable. I wish researchers would study a broader range of patients, including the most severely affected, instead of focusing exclusively on those who are well enough to travel to medical centers, exercise for 8 minutes on a bike, and continue exercising at home.
But it’s not just the severely ill who will suffer as a result of what Klimas and Sol said. All PwME should approach exercise with extreme caution, and Klimas should not suggest otherwise unless she has published data to back up her claims. Don’t forget: mild CFS can progress to severe ME at any time.
This is a great article with lots of good information. I too was quite surprised that some patients had been able to return to normal exercise levels as you pointed out (see below). That’s an extroardinary accomplishment and we need more information about their makeup..
” Then Dr. Klimas claimed that some patients have been able to return to work or athletics…..Personally, I was very surprised to hear Dr. Klimas make this claim. ”
I don’t doubt if she says it, though, that it’s true..She must, after all, be referring to patients she’s treating and who’s progress she’s observed.
My recollection was that she said that the return to full exercise capability occurred for some patients. Suggesting that Dr. Klimas is saying that slowly progressing exercise with a HRM is curative for ME/CFS patients – which is what many who read the sentence below will take from it – is a very different statement; that was not my impression. My impression was that it worked for a subset of patients and to be accurate the below statement should have reflected that.
” 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.”
If that is her experience as a clinician then I think she should report that. If she’s seeing that kind of progress I believe its helpful to report prior to being put in a study that may show in a year or two.
With their precautions that patients not exercise in a way that makes them worse Dr. Klimas and Connie Sol are not advocating anything that can harm patients.
Good points, Cort, and I can clarify.
First, I agree that Dr. Klimas did not claim exercise was curative for all of us. But I did understand her to say it was curative for some patients in that they were able to return to work. She provided no other information so it is impossible to know if she can identify a subset of patients or if this effect was seen in only two or three patients. Even if she only has one or two case studies, I would like to see that published so we can better understand those cases. I do not doubt Dr. Klimas’s word, but I do think it is important to back up claims like these with data. How many times have CDC or others claimed that exercise will improve CFS, and how much detriment have patients suffered? Dr. Klimas knows all this, and I do not lump her in with supporters of GET. I just want claims of significant improvement – from exercise or any other treatment – to be supported with data. We have enough anecdotes of enough treatments. What we need is data.
Second, to the point about whether Dr. Klimas’s advice will hurt patients, I don’t think the risk is high. As I said, Dr. Klimas’s advice overlapped with Dr. Snell’s advice in many ways. I do think that Dr. Sol’s method may set the heart rate alarm level a little high for some patients. But both Dr. Klimas and Dr. Sol were clear that activity should not cause symptoms. Dr. Sol pointed out that the effects of this method could take months, and intentionally so. The right level of exercise is one that has no impact on symptoms. She was very clear on that, and I agree with her.
Thanks
Looking back at my notes I do see that I wrote that Dr. Klimas said “Deconditioning can explain much of the dysautonomia present in ME/CFS” – which is an amazing statement…I had thought she said that it simply added to the burden but no….this is puzzlingstatement to me…since I’m clearly not deconditioned yet my symptoms suggest dysautonomia plays a huge role….
We’ll find out more at the conference.
Kathy, I’d love to know which Bruce Campbell article you are quoting please. My recollection of his articles on activity/exercise is that with pacing and great care we could improve 1-2% a month.
I remember reading that what helped him increase his walking ability (time and distance)was to sit and rest once he had reached his perceived walking limit. I have a lightweight folding camping stool with a shoulder strap which stopped me from being housebound and helped me to be able to do some shopping. I simply sat whenever I needed to for as long as I felt was right. Six years on I still take and use this stool at exhibitions or where ever I need to have to stand or walk further than I feel I should. I’m certainly not cured but the stool has helped me to reclaim some of my previous life.
@Suella
Suella,
I have scoured his website looking for what I thought I had read and I cannot find it – I think you may be right and I just found the comment about improving 1 to 2% a month. Thank you for correcting and setting my mind straight!
I like the idea of using the camping stool for resting. That would be especially handy when my husband and I go for walks on the beach with our retreiver. I do more stopping than walking, but it’s still fun. Maybe if I could sit instead of just standing, I could go a bit farther!
Thanks so much for this summary Jennie. As the carer of a 13 year old girl I tie myself in knots trying to work out how to best support her when there are no accepted guidelines. It’s a crazy situation but you know that. I just wondered if you know if the heart rate guidelines apply to adolescents also? Or if the equation should be slightly different? Thanks.
Annie, that is an excellent question!!!!! None of this research has been done in adolescents or children, as far as I know. I suspect that the calculation (220-age, etc etc) is the same but we have no published data on how adolescents with CFS respond to this pacing method. Maybe they respond better? I will see if I can get any information from an expert on this, and publish something on it. Very good question and thank you for bringing it up!
What confuses me about the conversation is the implication that using these methods will lead to continuing improvement in most or many patients. I’ve been sick for 22 years and have always tried to do as much movement as I’m able without causing PEM. For the first few years my envelope was tiny; after that I settled much more into a relapsing/remitting cycle. When I’m feeling better, I’m able to do more movement, including gentle walking and stretches, and when I’m worse my ADLs seem to use up all my energy. Maybe if I hadn’t done this–kept movement to the level that didn’t worsen symptoms — I’d be better, but I certainly haven’t had any pattern of continued improvement over time. It’s one of the things that makes me crazy about this illness — I haven’t found a way to build up over time — and believe me, I have tried and tried.
I was saddened and perhaps confused by Nancy’s comment that deconditioning was a causitive problem in ME and CFS.
I posed a question at the “interview” about acute onset which eliminates or certainly reduces the question of deconditioning. The question was not answered.
At Mount Sinai Medical School in New York we have founded a ME/CFS Center with a generous grant of $1,000,000 from one of my patients. We have started a postexertional malaise study (PEM) in ME and CFS to determine why there is this peculiar PEM several days after exercise.
After careful selection using the Fukuda and Canadian consensus criteria, patients and controls will be studied in double-blind trial.
It is a multidisciplinary approach involving specialists in internal medicine, exercise physiology, virology, immunology, cardiology, pulmonology, and genetics. It is the largest most comprehensive study underway in the US.
Yes, you raise an excellent point. For those of us with sudden onset, deconditioning does not explain the illness itself or the severity of early symptoms. It may play a role down the road, but how much influence it has on symptom severity does not seem to be addressed in much research.
Best summary and commentary of the CDC-Klimas Conference Call I’ve read. Well-organized, easy to follow, with excellent points and questions. A superb post, as always, Jennie.
I can’t help but suspect that Dr. Klimas used language she had not intended to use, particularly with regard to deconditioning as it contradicts her own previously published research(or, perhaps, she is trying to say she believes her earlier paper was incorrect?). What I find so puzzling is that Klimas and Sol presented on a topic on which they have not published and for which they could provide no data. Is there a reason to bypass the peer-review process?
Moreover, why was this the topic of a CDC conference call with a group of patients who are already deeply suspicious of CDC with regard to its handling of their disease, including this issue?
Needless to say, I concur with the concerns you and other commenters have made about exercise/movement for those of us on the more severe end of the spectrum. And had to laugh with Rebecca above regarding use of a pool (the energy cost to get to one would preclude getting in one, and the cost of having one at home is a bit beyond my monthly $710 SSI check, to say nothing of what my apartment manager would say 😉 ) Yet I should also note that I have found the lack of concern about deconditioning among some ME/CFS patients I’ve encountered to be regretable. Many of us with this disease are also hypermoble, meaning that muscle atrophy frequently results injury including joint subluxation and dislocation. Muscle atrophy in a heart leads to even worse. We must figure out how to safely exercise/move with this disease. And that requires good, peer-reviewed data along with individualized treatment and rehabilitation plans. A phone-conference with no data but assurances that some lucky few have been able to go back to work using very generalized admonitions is hardly adequate.
Michelle, these are excellent points and I agree with you. I worry that collectively and individually we are resistant to exercise because the risk of exacerbation is so high. We’ve also come to fear (quite naturally) that we could crash and never come back from it. But we need to try to do it safely, even if exercise for us means taking a shower. Here’s what I wrote in my article on exercise:
“CFS patients and their health care providers share the same goals: reduced symptoms, improved functionality, minimized deconditioning, and better health. Patients and providers must find new ways to work towards these goals cooperatively. Physical activity is essential to human health, but CFS is unique in how it affects the body’s response to exercise. People with CFS cannot simply exercise and feel better. Exercise – of the wrong type or in the wrong amount – will exacerbate CFS. Therefore, physical activity must be attempted carefully and cautiously, using some method to help patients identify and stay within their limits. It may be challenging for people with CFS to allocate energy to such activity if they have difficulty keeping up with routine tasks of daily life, and this decision is highly individual. Health care providers need a compassionate understanding of CFS and the effects of activity. People with CFS need patience and a willingness to experiment. A new delicate balance must be found so that both sides can cooperate in supporting people with CFS to be as active as is safely possible.”
http://www.cfids.org/cfidslink/2010/100604.asp
I’ve had CFS for over 50 years and spent decades trying to exercise and found I always reached a limit I couldn’t sense that, when crossed, caused PEM. I finally got it right in 2001 after I had been bedridden and without exercise for more than 5 years and was sufficiently desperate to accept the severe limits I had to respect. I was inspired by Bruce Campbell’s energy concept.
When in 2001 I tried to find the minimum level of exercise I could do without a relapse, even three minutes of walking was too much. When I got down to one minute of walking, I found I could tolerate that. I built up from there, adding a minute a week. Over the next five or six years I slowly built up with to one hour of walking most days of the week. There were several relapses along the way in which I had to cut back before building up again.
I decided to limit the time to one hour, but once I could walk an hour without relapsing I began increasing the intensity of the workout in small increments — small enough not to lead to a relapse. Now my routine includes over twenty minutes of gentle jogging during the hour and I continue to very slowly increase the time spent jogging and the intensity.
I do not track my heart rate. I stay within my envelope by limiting the time and intensity of the exercise in very measurable ways. I do use a stop watch to track the phases of my workout. I keep my workout at a level that doesn’t cause PEM even when I don’t feel particularly well. However, if I feel too sick, I skip the exercise that day. Many weeks I do my walk all seven days. I can usually do it at least five days in any given week.
I mention all this because carefully limiting exercise by time and intensity rather than heart rate has worked well for me. However, it took great patience to accept how slowly I could safely increase the intensity. It took me over forty years to develop that patience.
Although my CFS symptoms are better and I think my successful re-introduction of exercise back into my life has played a role, I’m far more fit now that most people my age and I still have the full panoply of CFS symptoms (including PEM), so I think the good Dr. Klilmas is way off base on this one.
Bruce, this is extraordinary! I have found and am hopefully accepting that there may be a hard limit that I may never be able to exceed. But your story does give me hope. I admire your persistence. I am trying to be as disciplined as you. Many days, I feel like the choice is do the dishes vs. do my stretches vs. write part if a blog post. How to choose if I can only do one? I usually choose writing (for fulfillment) or dishes (for cleanliness). The stretches are too much but I hate to give that up too.
In my 26 years with CFS, I, like many of you, tried many, many times to exercise and when I could do it, I enjoyed being able to move my body. It felt good. I tried standing exercise, sitting exercise, walking outdoors, pool exercise, exercising with others, alone, in front of a TV tape and moving in bed while prone. The bottom line was, however, that even in my better days, I couldn’t sustain anything on an on-going basis. I’m glad to be reminded about it cause I want to get back to stretching and moving while laying down.
But now, I’ve made a decision that when I have extra energy, I put it into increasing my activities of daily living. Getting out of the house when able. Being in the world a little. So I go to the store myself and walk around shopping which has the added bonus of seeing other people and having an interaction with a clerk at least. If I can’t go out, I walk around my large house, putting things back in their places, as my exercise. I clean up the kitchen when I’m able. Or organize an area that’s messy. Or spend a couple of hours talking with people who have a window to the world. Or fold laundry. Or check in with friends and see how they’re doing. Or respond to people trying Xifaxan which has helped me and offering encouragement and hope to them. Or I just rest when I can’t do anything and try to find some distraction, music, TV, reading if I’m able, to help the time pass.
I’ve given up on trying to formally exercise. My greatest happiness comes when I am in acceptance about my limitations, make the most of my abilities and try to live in the present moment. Toni Berhard’s book “How To Be Sick” is helping me learn how to do this and I highly recommend it for a re-read or first read. This is surely not the best course for everyone, but it has brought me peace and serenity as long as I stay in acceptance of reality. As the Big Book of Alcoholic’s Anonymous says, “Acceptance is the answer to all of my problems today.”
This discussion is very interesting. I’ve been sick nearly 14 years and during that time there were two periods when I was able to exercise. Over the last year I’ve been working hard to understand what I did to make that possible. I’ve been trying diets, sleep treatments, meditation, various supplements, but nothing worked. Then I read Max Banfield’s online book and it seemed to mirror something I was beginning to wonder. Is it possible that PEM isn’t caused by a static level of activity, but instead is it caused by a level of activity OVER AND ABOVE WHAT WE CURRENTLY TOLERATE. If that’s true, it means that we might be able to use training (as Banfield did) to improve our resilience to PEM, and very slowly and very slightly extend our activity envelope. What “Bruce” has done seems to follow this path too. When I exercised in the past I did start very slowly (I was also a bit less sick) and so it seems likely that taking it slow was the key to past success, without me realising at the time.
A few months ago I got on an exercise machine and did 1min on a low setting, like a walk up a gentle slope – I relapsed for a few days. A while later I tried some very very gentle yoga that took 2-3mins, involved no significant exertion, and all was lying down – I relapsed. I’m semi-housebound, I can walk and go out a bit, but need to be at home 95% of the time. So more recently I decided to try again, but this time to a) start much slower and gentler, and b) use a heart rate monitor and a Fitbit (pedometer with a web-based dashboard). My intention was to monitor my activity and limits.
The first thing I noticed with the heart rate monitor was that my resting heart rate is 65-70 (lying down), a sign of me being unfit (I’m 40). The second thing I noticed is my heart rate hits 95 when I stand up. Even just sat at a desk it’s often near 80. Even aside from the ME, this bothers me, being so unfit is likely to be predictive of future additional health problems. This recognition started me thinking about what I could do to, very slowly, find a way to increase my cardiovascular health.
I decided to use Klimas’ figure for the heart rate upper limit, which for me is 108bpm (220 minus age, then take off 40%). I started initially doing very gentle stretches. I also committed to meditate for 20mins every day (www.getsomeheadspace.com), and over a period of weeks I found the stretching had “become ok”, I’d slowly increased my ability to do a little more, without relapsing. Over time I added more stretches.
Having done that I used the Fitbit through trial and error to work out a daily number of steps I can do without relapsing, and started to use that as both a target (do a bit more on days when I’m less active), and also as a limit to try not to exceed (where possible). My aim was to flatten my activity so it’s more consistent. Previously I’d had a pattern of having many sedentary days with v few steps, and then I’d leave the house and have a spike, which inevitably caused a relapse, unsurprising.
When that routine had settled down, I started to “exercise”. On the first day I did 10 seconds on a cross-trainer, on the lowest setting and got off – in exertion terms little different to walking across a room. My level of sickness did increase, but getting good sleep (meditation, melatonin, blood sugar management, earplugs, etc) got me through. I carried on like that for a few days and when it was stable, went to 15 seconds and then 20 seconds. Since then I’ve carried on gently increasing the time and machine resistance very gently, following my BODY (NOT a schedule!) as a guide. If I start to feel too sick, can’t sleep, or get a mild fever, I back off – while exercising I strictly watch my heart rate and if the alarm goes off (at 105bpm) I ease off or stop, so it doesn’t hit 108bpm. After the exercise I lie down, to take the pressure off my heart anmd get my heart rate back to resting level. I’m now doing 7mins a day on a medium/low setting and I’m not relapsing, which for me is a minor miracle. I may relapse at some point, but if I do this process gives me confidence I can get into activity again, just b=y starting slowly.
I don’t see this activity as a treatment for the ME, I actually feel more ill as a result, but the benefits to me are that I am slightly fitter, and a bit more resilient to other daily activities. So really it’s a way of avoiding further health problems, and improving my health in other areas. I get a little dizzy when I stand and have very cold feet, and so a slightly stronger heart is likely to help there.
I was recently offered Graded Exercise (in the UK) and I turned it down as my understanding is they use a targeted exercise plan, and suggest you plough through relapses and keep to the plan, that sounds dangerous and stupid to me. For me the only thing that’s worked is to find my own limits, and each day to VERY GENTLY increase them. I look upon it as a serious athletic training, but on a microscopic scale, where an athlete might want to push past their personal best, I need to find the patience to exercise so I have as few symptoms afterwards as possible.
I fully appreciate what I’m talking about here may not apply to others, and especially those much more severely affected. I am however fascinated that my inability to do activities without relapsing have been overcome with a few months of very gentle daily steps to very slowly increase my activity envelope. I’m now considering trying swimming later this year which was a distant dream even a few months ago. Swimming is something I enjoy enormously and miss hugely, but it has the benefit of being a horizontal exercise, so logic suggests the heart can handle it more easily as less effort is required to push blood vertically – though of course getting TO a swimming pool is the biggest obstacle for many, I’m lucky I live next door to one.
Great comments, Ollie. Thank you for sharing your routine and how you created your own rehab program!!!
I just got a Fitbit myself. I love your idea of using it to even out activity. I will do a future post on using the Fitbit here.
Some of your symptoms could be related to orthostatic intolerance issues, like the huge jump in your pulse on standing. Increasing salt and fluid intake might help. The use of betablockers might be something to think about too.
I think your success is very impressive!
Thanks Jennie. I am sure you’re right that the blood pressure issues are related to OI. I am on the Dr Enlander protocol which includes electrolyte salts (with mito supplements, B12, and MAF878) and I think the salts help a bit. I’ve never passed out, so it’s just irritating and doesn’t feel very nice.
For me the most important treatments remain getting as much asleep as I possible can, eating a simple paleo-type diet, and taking low dose naltrexone.
A post on Fitbit would be interesting. I got the idea from CFS Patient Advocate, and I find it very useful to monitor my activity, as my activity is a good measure of how sick I am – the more active, the less sick. It’s also great to monitor sleep, especially how long I have slept.
Sleep is tough for me as I have some possible blood sugar thing going on, so if I don’t eat loads during the day (more than the cals I need) I wake during the night “buzzing” and only eating makes it stop. A doctor suggested it was my glycogen store running low, i.e. my body isn’t using fat, it’s run out of sugar, and releases cortisol to wake me up to eat. I have to eat three eggs before I sleep, and have three next to the bed in case I wake during the night. Annoying, but glad after more than a decade of being ill to understand why I wake during the night. I’m now eating less sugar (inc fruit) and taking chromium, hopefully that’ll help.
Every day I remind myself that yes, I’m ill and fed up and things are difficult, but what CAN I do today that might get me closer to being well, or at least not get worse?
For some of us, the very large subset with mmune defects and persistent infections, it seems to me insanity to suggest exercise before the underlying conditions have been treated. Off Ampligen in 2009, I had a spinal tap that showed active HHV-6 and Cytomegalovirus in my spinal fluid. Blood tests also showed persistent infections with CMV, HHV-6 [actually HHV-6 Variant A], HHV-7, and Coxsackie B, plus periods when EBV activates and periods when it goes dormant again (at least in my blood …). My natural killer cell function was 2-3% during that period off Ampligen, and I had the 37kDa Rnase-L abnormality – the defective enzyme was even in my spinal fluid.
The CDC does not “believe in” persistent viral infections – they have a cockamamie version of my illness where my IGg and IGm markers look “as if” I had active, persistent viral infections but I really don’t … Mind you, the same tests in an AIDS patient or an immunosuppressed cancer or organ transplant patient is taken seriously. Just not me because I have a prior diagnosis of “CFS”. And, of course, they do not “believe in” my immune biomarkers, either.
When those viruses were active, I was mainly bedridden and housebound and kept getting worse. I had classic symptoms of encephalitis, major neurological and cognitive dysfunction, and constant pain. Exercise was the least of the medical issues to be thinking about!!
For CDC to choose to tell the world about exercise, and not those of us with serous, life-threatening immune defects and infections – and those with cardiac abnormalities – is kind of sick, and I have said elsewhere I was shocked that Dr. Klimas played into their plans to make psychiatric counseling and graded exercise the keys to treating this disease. It is simply irresponsible.
Later, on Ampligen, when my immune markers normalized and my viruses became dormant, I start the long, slow slog back to better physical condition – oh, and it feels so wonderful! I used to dream about walking – to get to walk along Lake Tahoe was heaven. But it takes a while.
Still looking for Plan B, what I will do when I lose Ampligen, which should be soon. But I am glad for the periods of near-health that I have been able to enjoy.
That was a little off-topic. But for all of those who share the illness as I have it – persistent and activating viruses that wreak havoc with your body – the call to exercise is both heartless and irresponsible. When are WE going to be the subject of a teleconference?
Great discussion. I’ve ordered myself a heart monitor to see what I can get from this but in the many years I’ve had problems with fatigue what helped me most was not exercise but firstly eating a low glycaemic index diet, secondly going gluten free (was able to exercise a lot after that but it eventually provoked a severe relapse) and then taking vitamin D pills. I’m now trying the methylation protocol. When I was able to exercise I was not improving my fitness or building muscle at the rate you’d expect.
Ollie C I’m intrigued by why you have eggs at night and if you eat low GI in the day.
Molly,
I supported a Kickstarter campaign for a new kind of heart rate monitor. This is a continuos one that communicates to your smart phone wether that is an iPhone or an Android phone as long as it supports Bluetooth 4. This a new technique developed by Mio and Philips, there is no need to wear the uncomfortable strap anymore. Which was okay for a short amount of time but if you need to wear it all day it because irritating. The watch is not the cheapest one on the market but for someone like me who is in the 25% group it’s totally worth it. I had email exchange with the developer and explained my illness and what I needed the watch for and did she think it would be suitable for me since it is marketed for top athletes. Her answer was that this would be the only heart rate monitor on the market that would tick all my boxes especially the continuos box.
Here is the link. You can also do a search on Kickstarter.com to get the in and outs of the watch from start to finish. http://alphaheartrate.com/#alpha
I’m in the 25% group, almost totally bed bound and am very dissappointed by dr. Klimas. I feel she threw us, the severely ill under the bus. I can understand it from her point of view, more satisfaction is to be gained from the just ill or the middle group who still have a chane of recovery. With her silence about the severely ill she made it more than clear that she has given up on us.
If I would stick to the AT numbers than I would never ever be able to get out of bed anymore. When I need to get up to use the bathroom my beats per minute goes up to 140, by the time I managed to shuffle to the bathroom it’s 160. Is it these ‘exercises’ that keep me in an infinity loop? Go to the bathroom – crash – recover – next bathroom round, and so on? Lord forbid I have one of those days that my body decides to let go of the fluids accumulated around my heart and other places and bathroom breaks are 15 min apart.
I’m appalled by this new trend that exercise is the answer to ME, even dr.P seems more than interested in it. What happened to finding out why all these viral and bacterial infections ruining my body? Or even better find a way to kill them off without killing me in the process.
I can see that people with CFS who’s main complain is fatigue are being helped by Klimas’ protocol, maybe they don’t have the infections? I can’t see how it will help us who are in that severely ill group, PEM will weaken your body even more giving opportunities viruses or bacteria free play.
Perhaps I misunderstood, but my understanding is that Klimas is suggesting exercise can form part of treatment, as one of a range of options, at least with some patients. That’s quite different to saying exercise is the treatment for this disease.
I hope my post did not come across as me saying that all ME patients need to do is join a gym and they’ll be fine, I know only too well how ridiculous that is (and dangerous). My immune system is all over the place, though I have no active infections identified. What I wanted to express was that I have found a way to exercise, that doesn’t (to date) cause unmanageable symptom increases, and appears to be allowing me to at least slightly expand my activity envelope. It is not however moving the illness, I’m just as sick as before (slightly more).
I cannot speak for others, we all have to make decisions for ourselves about what is right. It seems obvious to me that recovery from any illness should include some sensible exercise at some point, but not if it has great risk attached or where any form of activity causes serious worsening of symptoms. I very much doubt my activity increase would be possible without the lose dose Naltrexone, sleep management, and diet.
I’m glad to see different researchers looking at different avenues, as I’d hope over time it will result in various protocols appearing, and that in turn may assist in sub-typing, where things may move ahead at a faster pace as we understand not only what brings us together, but that which sets us apart.
Tatt, I also take vitamin D. Wheat-free didn’t help, but I limit my intake. My diet changes regularly as I try various things, but I am now eating a low GL diet and started that once I realised my blood sugar was all over the place. Meat “poisons” me if I eat too much, I get a severe worsening of symptoms, extreme brain-fog, etc, so the core of my diet is vegetables, fish, pulses, soya, and a little fruit. I eat eggs at night as it allows me to sleep, I don’t know why – a big heavy meal does the same, I suspect it’s sugar related but not sure – if I got to bed without having eaten for 3-5hrs, I lie there wide awake completely unable to sleep. For whatever reasons eggs seem to be a good food for me. I eat over 1,000 a year, bit sick of them, but life is easier. Much better to eat a tonne of eggs and take melatonin than sleeping pills, which I only use occasionally.
My heart rate monitor arrived today and standing up increases my heart rate by about 20 while a single flight of stairs is getting me close to the limit. However since starting the methylation protocol I’m feeling better and ready to exercise.
Everyone who is housebound should be on vitamin D, it has a role in reducing inflammation and possibly in sleep quality – see http://drgominak.com/vitamin-d
Eggs contain glutathione precursors
Thanks Jennie, and others, for your excellent insight. This is my first post, with questions/comments regarding sleep and ME, plus heart rate monitoring.
I am an “experienced” ME patient (since 1990). In mid-November, I consulted a specialist who prescribed a sleep hygiene program which included restricting my total hours in bed to 7 1/2 hours plus bright-light therapy first thing in the morning. After two nights, I was already experiencing mild “crash trigger symptoms”. I discontinued the program after three weeks by which time my symptoms were severe. Unfortunately, this did not stop my decline. And, my sleep patterns were becoming increasingly disturbed. By the third week in December, my cardiac symptoms were so terrifying, I spent Christmas nearly bedridden, and wondering if I should be going to ER. During this period, I found the International Consensus Primer, and read about heart rate monitoring. My first question is: How long has heart rate monitoring been recommended for ME patients? I have attended every conference/lecture on ME in our rather large city, and have done extensive reading. I’m wondering why I haven’t heard of this pacing strategy before now.
I’d also like to hear of other ME patients’ experiences with sleep specialists. I have recently “fired” mine. He showed no concern regarding my cardiac symptoms, had no interest in the comprehensive manual on ME management strategies published by my city’s ME specialist, and said the ICP document was of no value to him. When he referred to my underlying medical condition as “encephalitis”, I realized he didn’t know what he was talking about. Further, he told me all of my symptoms were because I was worried about my sleep! Currently, I’m working with my family doctor to determine if anything (other than ME) is causing my rapid, irregular and variable heart rate, unstable blood pressure (both too low and too high), chest pain, POTS, NMH, etc.
Using the heart rate monitor as a pacing device has been challenging. Because, my heart rate goes into the 150’s doing basic personal grooming. At my worst, the monitor alarms when lying down and merely twitching a finger. We purchased a Pulse Oxymeter to record what my heart rate is doing while sleeping. It fluctuates wildly all night. And, during the daytime while lying down and listening to book tapes (an attempt to make an otherwise dismally-boring lifestyle more palatable) it is even worse. The graph print-out looks like the Manhattan skyline, with a low of 45 and a high of 115 bpm while lying down and perfectly still — changing up to 60 bpm within a couple of seconds. Yikes! So, I guess this explains why many ME specialists recommend “eyes and ears closed” when resting.
Previous posters have commented on the challenge of determining one’s maximum heart rate. Here’s another wrinkle. The February issue of “Alive” magazine provides the following method of calculating peak heart rate for women: “subtract 88 percent of the woman’s age from the number 206 (206 minus 88% of age). For a woman my age, this reduces my peak heart rate from 163 to 156. Has anyone else heard of this new calculation method for women, and whether it should be applied to ME patients (as opposed to purely cardiac patients)? Based on the conflicting advice on how to calculate maximum heart rate, mine would range from 78 (50% of 156 as per Staci Stevens) to 106 (65% of 163 for a patient who is not particularly deconditioned).
Has anyone found a way to enforce pacing their mental activity? Currently, I am unable to read, watch TV, listen to book tapes, etc., without increasing both my resting and maximum heart rates. My heart monitor frequently alarms while typing on the computer (range of up to the 130’s). But, it doesn’t alarm when sedentary, but doing activities involving mental concentration. Mental activity causes me as much (or more) PEM as physical activity. My adverse reaction is often delayed, so I frequently overdo and suffer the consequences. Any suggestions?
Heart rate monitoring as part of pacing in ME has been recommended for a number of years, but the information spread has been limited. I know it’s been discussed at meetings of the IACFS/ME in the past, but the information is not getting to the patients and healthcare practitioners who really need it.
Heart rate variability like you describe is not unusual in ME, and it is good that your primary care doctor is investigating other causes. That’s very important. You might discuss using a beta blocker with him. I posted about them here: http://occupyme.net/2012/12/04/insufficient-data/ Many patients have found beta blockers improve their OI symptoms and even out their heart rate.
And pacing mental activity is SO CHALLENGING! I have really struggled with that. I’ve tried using timers to get me off the computer, or other methods to break up tasks. It’s such a challenge and the heart rate monitor does not capture that level of effort. I try to stay mindful of how I’m feeling and lie down for real rest around noon regardless of how I’m feeling. But today, for example, I did not manage it and I can feel the PEM coming on. Maybe some day we will have a way to track mental effort. The best suggestion I have for you is to take frequent breaks regardless of how you are feeling.