Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter? Brown AA, Evans MA, Jason LA.Chronic Illn. 2013 Apr 12.
‘:earning to stay within your energy envelope isn’t easy particularly when one first comes down with chronic fatigue syndrome. Most of us have trouble – lots of trouble – adjusting to our new limits. We smack up against them again and again as if doing so could somehow make them disappear (Sometimes the phrase “insanity is doing the same thing over and over again and expecting a different result” comes to mind).
Adjusting to the energy limitations of ME/CFS is highly recommended but how many people really benefit?
Clearly we’re hardwired mentally for a higher energy level and adjusting to a new wiring takes work. Over time, though, most of us do finally ‘get it’ and make some sort of peace with our limits. One study, showed that people who’ve had chronic fatigue syndrome (ME/CFS) longer tend to employ more coping strategies.
Some coping techniques can be helpful. A study by Jason examining recovered vs not recovered vs healthy controls found no significant differences in stress, social support or even optimism between these two groups but did find that people who had recovered spent less time focused on their symptoms and more often used ‘positive reinterpretation and growth strategies’.
That group clearly benefited from some coping techniques. This study, though, examined if distinct groups of patients differ in their ability to benefit from coping techniques, including staying within their energy envelope.
The Study
In this study from Jason Leonard’s DePaul group, looked at how effective staying with one ‘energy envelope’ and a variety of coping mechanisms were. They assessed physical functioning (SF-36), degree of post-exertional malaise, the degree to which individuals stayed within their energy envelopes and two coping scales – one negative and one positive. The negative coping subscale looked at the degree of distraction, behavioral disengagement and self-blame present and the positive one looked at the amount of active coping, planning and acceptance participants engaged in.
Results
A cluster analysis revealed three subsets of patients based on their PEM, energy envelope maintenance and physical functioning.
The most symptomatic group ignored their limits – and paid the price
The Envelope Pushers: Highly Symptomatic and Overextended (@20/91)
This appears to be the push-crash bunch who defy the signals from their body to stop, and as a consequence, appear to be really hurting. The presence of this group suggests Jason’s earlier studies showing that exceeding one’s energy limits causes patients symptoms to soar were accurate.
The Adjusters: The Less Symptomatic and Moderately Overextended Group(@34/91)
This group was better at staying within their energy envelopes and reaped the benefit of that with less severe PEM symptoms and higher functioning overall. Their higher functioning suggests that intriguing possibility that doing less actually allows you ultimately to do more and that by conserving your energy you can build it up to some extent.
The &(*% Out of the Luck Group: Symptomatic and Mildly Overextended (37/91)
The largest group appeared to be working hard to stay within their energy envelope – they were only mildly overextended – and were being ‘good patients’ and coping just about as hard as they could but were still very limited functionally and symptomatic. In fact, this group appeared to be using more coping strategies than the other groups but benefited from them less.
It appeared this group was trying everything they could but to no avail. They also had increased pain, which undoubtedly exacerbated the problems they were facing, and suggested that ME/CFS patients with high pain levels may get less help from energy envelope and coping strategies than others.
‘Coping’ Falls Flat
Behavioral ‘coping’ techniques pretty much fell flat in this study. Coping didn’t have a lot of effect on any of the clusters and the group that engaged in them the most – group three – didn’t appear to benefit all from these techniques. Using Energy Envelope techniques, on the other hand, clearly worked well for a significant portion of people with ME/CFS.
Neither energy management or coping appeared to help a large group of people with ME/CFS.
Does that mean coping is dead? ‘Coping’ subsumes a vast number of techniques and too few coping techniques were assessed to determine that. The scale used to assess them (Brief Coping Orientation to Problems Experienced Scale -bCOPE) has ‘adequate reliability’ in assessing different ways of coping with stress. It’s limitations, aside, this study suggested the best ‘behavioral’ tool for reducing ones symptoms and improving ones functionality is staying within ones energy envelope…
The authors threw psychological dogma on its head by suggesting that some coping methods usually considered negative such as distraction, behavioral disengagement and avoidance, may actually be adaptive for people with low energy and high fatigue. With Dr. Christina Lasich, a pain expert dealing with severe pain issues herself, calling ‘distraction’ the greatest pain reliever, they might want to add pain in there to. (Just as an aside, Staci Stevens of Workwell, recommends deep diaphragmatic breathing in ME/CFS to help reduce pain.)
The first two groups – one defined by increased activity levels and increased symptoms – and the one with reduced activity levels and reduced symptoms -suggested that GET doesn’t, despite a string of positive studies, necessarily work and that staying within ones energy envelope is more productive.
The last group doesn’t follow that pattern. Their care in not over-extending themselves suggests that doing so has really negative consequences but staying within their energy limits hasn’t brought them much relief. This is not the group that feels fairly good so long as they stay within their limits – they don’t feel well at any time.
While the authors noted that it was possible that group might have done better with more activity it didn’t seem likely. Dr Friedberg has suggested that most people with ME/CFS are overextended and this study – with 2/3rds of patients being at least modestly overextended- bore out that conclusion. A smaller percentage of patients are probably underactive and my guess is that some patients in the last cluster fit in this category but most do not.
That 40% of patients don’t benefit from these tools isn’t necessarily surprising, though, since even ME/CFS specialists have noted they don’t have much impact on maybe a third of their patients; ie finding a substantial treatment/therapy resistant group is not surprising.
Conclusions
Coping has its limits; as defined by this study coping appeared to have at most moderate effects on all groups with energy envelope techniques being more effective. The presence of two groups – an overextended group with high levels of symptoms and a less overextended group with fewer symptoms suggested that energy envelope techniques can be effective in reducing symptoms and increasing functionality.
The big surprise (?) was the rather large class of ME/CFS patients (@40%) whom the study suggested are using coping techniques and staying within their energy envelopes – but to no avail.
The DePaul team suggested more studies (of course :)) but added a twist and proposed that autonomic nervous system, immune and neurological tests would illuminate what’s going on in these groups before.
Thanks for sharing and explaining this study. It certainly gave me a larger perspective.
This study is a great example of that there is no treatment for ME/CFS that helps everyone.
While I believe a study like this should not be used as an excuse for people to not even try coping and managing their energy, it can be super helpful for people who’ve really tried coping and and felt no improvement. A study like this will hopefully help these non-responders realize that seeing no improvement was not their fault.
Right, I assume that the people in that third group who didn’t get better would have fared far worse if they hadn’t been managing their energy and ‘coping’ and it does validate the experience of a substantial number of people.
This was not a study that gave people ‘coping techniques’ and then determined how effective they were and it was pretty light on coping techniques anyway…so I’m really wary about saying that ‘coping’ can’t be really helpful; in my experience it can be but there are probably many people that are either too sick or as in that third group – tried them and for whatever reason they just didn’t work. ‘
It’s going to be so interesting over the next couple of years to see the subsets start popping out.
I agree coping has its limits as I am probably in the 40% group who are using coping techniques to no avail. I hope the De Paul team gets to do more studies. I sure hope the proposed that work on the autonomic nervous system, immune and neurological tests can illuminate what’s going on in these groups including mine!
As always thank you Cort for educating us all on these important issues!
Thanks Michael,
It would be fascinating to see if how the lack of progress using coping/energy management is associated with reduced functioning; ie the worse off you are the less effective these techniques are and vice versa….
I agree that we’re wired to be active. Reigning in is the hardest thing to learn. It would be interesting to learn what is going on biologically in the group that used more coping strategies and why they fared worse. This illness has no rhyme or reason. You can do everything right and relapse, and you can do everything wrong and have good days.
That unpredictability really came out in Day I of the FDA Stakeholder’s Meeting. I wonder if there are more delayed reactions to exertion than we know?
Cort, thank you for your usual good summary of this really interesting study. I’m really lucky to be moderately to lightly affected, but still I have to use coping strategies all the time. There are so many things I want to achieve in a day and if I’m feeling happy and active in the morning I might hopefully make a list of jobs for the day. But I prioritise the essentials and I’m ready to drop many of the others off the list if my energy drops too low. The bad days are when I get to my last task, which should be making the evening meal, and I know I’ve no energy to do it. That’s when I reach for the leftovers or the eggs and baked beans.
But I have problems that really cause pain and distress, such as painful feet that swell with the slightest warmth and that are most problematic at night in bed. Naturally, that causes loss of energy and poor brain functioning the next day. And quite honestly, the best way I’ve found to help me with that problem is to find the right neurasthenic pain killer so I can sleep a decent night’s sleep. I’m currently trialling Neurontin and Lyrica, only taken at night, and although they certainly have side effects they have given me much more energy and optimism for the following day. My conclusion is that conserving of energy can help, yes, but it can’t help increase energy until each person gets the other help they need as well. And that’s most likely medication to suit their particular needs.
Regards,
Lynne
Very interesting about the Lyrica and Neurontin. It certainly makes sense that reducing pain to get better sleep would help with morning energy since studies show that pain really disrupts good sleep.
I’m not very good at conserving energy – I’m really poor at it actually but I find that sometimes it works and sometimes it doesn’t. The variability is really something. Do the doctors have any idea what’s causing the foot swelling?
This is interesting and I suspect that I’m in that 40% that isn’t helped much by anything. The difficulty for me is the variability of symptoms. By this I mean that some weeks its seems that staying within my energy envelope helps–at other times it doesn’t make any difference. I’ve tried every which way–over-doing, non-doing, what I call “pacing” and every time I think one way helps, I find I’m wrong. This is based on over 20 years now of “experimenting” on myself!
I’d like to have a better idea of what the coping mechanisms are and also how the folks in this study determined their energy envelopes. That could help me as well as those newly diagnosed. I do know that I wish I hadn’t crashed and burned when I first got sick, but didn’t have a clue what my problem was. With more early diagnoses, I hope that problem is decreased for others.
Lately I’ve noticed that diversion really does help–playing solitaire, etc. I feel like I’m wasting time, but at least I’m not so aware of the pain then. So this study makes me feel better about that. But if the pain is too great, no diversion is possible. Then I try to “breathe into” the pain and not fight it…
And yes, how do we know if those who recovered recovered “just because” or because they were better at staying within their “energy envelope”
More studies that lead to some good treatments!!
Thanks, as always, for the summary and I hope my comments make sense.
How do you stay within your energy envelope is a great question. One way I can think of is to get a heart rate monitor and watch your heart rate just after you get up. If it starts to rise then you’ve overdone it the day before. I don’t how if that’s too coarse a measurement or not but I do know some people use that.
Actually determining my energy envelope has been difficult. I certainly can’t tell until afterwards if I’ve overdone it…Sometimes I feel fine after an activity and feel worse later. I think the OMI with their apps that are going to come out are going to give some us some good tools to determine when we go too far and when to stop.
I wear a heart monitor all the time and I am seeing slow definite progress. As Cort says you know when you rise that if your heart monitor is high you’ve pushed too hard recently (sometimes for me this means I’ve eaten a bit much of something I am intolerant of) and I must curtail my activity this day. Interestingly even if it is food intolerance I must curtail my energy envelope which does not make overt sense but there is some logic in the chemistry.
What happens on a bad day is that I will raise my arm and the heart monitor will warn me I’ve gone over 102 beats a minute. Or I will attempt planting my starts and as soon as I squat I am over the limit and must rest. So it is a lovely thing, telling me in the moment so that I never go into anaerobic energy generation which is so taxing to the body. I never go into this state and my body is never reinjured and so healing slowly happens.
Thus you can stay within your energy envelope without tedious charts or codes. It is effortless, even though one can feel tethered by it. It is all for the good.
I wonder how people were measuring their energy envelopes. I wonder if they were relying on the accuracy of a heart monitor or guesstimating. I was a bad guesstimator. I recently found a list of heart rates from a while back before I understood the whole thing and was using a blood pressure cuff to take my pulse. It was commonly shockingly high which explains a lot of the fishtailing I was doing. My heart rate never ventures that high any more because I have warnings long before it gets there.
The best thing about this is that I have hope in my heart which seems is very important to healing.
If this is useful: I use a Polar F1 heart monitor.
Reading over this brought back memories of the ‘early days’ when I thought this was a process that could be mastered! I could not master any form of it, and kept fighting, writing lists of errands and tasks, and no matter how hard I tried….yet, I am kinder to my early memories than I was back then, as I had two children to raise. I am today, amazed. I kept thinking there had to be a way to keep some semblance of control, looking for a door or window to open inside of me, free me from this illness. I was ‘crash and burn’ but didn’t have time to burn. I imagine I looked like a zombie in a minivan!
Very eloquent Mary,
I kept thinking there had to be a way to keep some semblance of control, looking for a door or window to open inside of me, free me from this illness.
Very evocative…looking for a door or window to open inside of me – I feel like I’ve been looking for that for years – twisting and turning trying to find that door
Cort,
I am having difficulty understanding what they mean by coping mechanisms. They refer to negative and positive but not much more. Yet coping must be well understood for the study to include it without clarification. Do they mean such things as taking a warm bath, framing thoughts differently, relaxing into one’s pain, yoga, aromathrapy and so on? Diverse and vague.
It seems odd that they analyze whether coping mechanisms help recovery since coping by its very nature seems to me to be a way to endure the status quo rather than a means of changing it. And changing it is what it is being analyzed for. Odd. Don’t understand the premise.
Having reread the study, I agree that “coping” is not described specifically enough to really make a conclusion for whether it worked for the 40% non-responders.
What this study determines is that the coping mechanisms employed by the first two groups with the higher-functioning individuals did not work for the third group with the most sick patient group. Cort’s article and Theresa’s comment already hint at that coping mechanisms different from the ones that work for group 1 and 2, such as distracting, avoidance, playing solitaire, or breathing into the pain, actually works for some people with pain and severe ME/CFS.
While even these different coping techniques may not improve the functioning of the group 3 patients, it seems that they at least improve the quality of life. In that sense, I don’t think it’s right to say “coping doesn’t work.”
Agreed. This is not the death knell of ‘coping’. For one there are many types of coping and some coping techniques that were developed specifically for ME/CFS by people with ME/CFS, such as some of the techniques Ashok Gupta uses, are not included.
I can’t imagine that ‘coping techniques’ can’t help at least improve quality of life for most people. The problem is finding the one that works for each person. Some just don’t work well for me and others work better.
For me’coping’ is a large field that includes techniques such as acceptance, neurolinguistic reprogramming techniques, practices associated with Buddhism, Christianity and other religions, psychological approaches, you could throw Stoicism in there (if anybody still practices it…really any mental discipline or tool that enables us to be happier, healthier and more effective in life. For Landmark Education is in there.
I have a large conception of ‘coping’ and the word ‘coping’ which suggests managing something that’s thrust on us and is burdensome and that you’re at best going to have moderate to mediocre effects on – is really not a very good word.
I am a patient of the third group. Coping, GET and CGT don’t help me. I feel many symptoms all the time. I also have POTS and think that this group is a subset. I feel dizzy, weak and have problems with breating etc…
How are we defining coping in this study? Is it assumed to be the same as pacing, partially similar or completely different?
I understood from reading this article that coping is defined as something different from pacing.
Coping is defined as having a positive attitude, etc.
Pacing seems more like what they define in this study as staying within one’s energy envelope.
Yes, coping seems to be the icing on the cake of pacing. I’m amazed that when I’ve lost all energy to do anything sometime in the afternoon, and I know there are a couple of hours to fill before my next task, which is to make tea, if I just sit and try to relax I get nowhere, and I just feel unhappy. But if I do something that detaches me completely from myself, like working my way through a magazine or reading a believable and not too horrible crime procedural or thriller, with maybe some funny moments, I can lose myself in that entertainment, and be okay to cook early in the evening. Mind you, I have to stop myself starting to do that about 4 pm! It seems to be important to forget myself for those hours, so Theresa’s method of playing solitaire can do that, or something like going through old photos and remembering happy moments. It’s not just pacing, it’s the quality of life you can give yourself while doing that.
Cort, with regard to your question about swollen feet, doctors do get concerned about them, but they’ve had no suggestions so far on relieving them. It’s pretty bad, I’m at the stage of having to take a cold pack in an insulated bag when I go anywhere. It’s just awful trying to drive home with stinging pains in my toes after trying to shop for an hour or so. At night it’s really hard to find a way to stabilise my body temperature. I can be shivering but one or both feet can still be swollen, red, and stinging. I can even have just my big toe swollen and burning while the toes nearby are purple from cold. Aargh! If anyone knows about this I’d appreciate suggestions, but this thread is actually about coping, so I’ll get off now…
Damn, why did I say that?
Two mistakes I made in my previous post: first, Cort, to answer your question re Neurontin and Lyrica again. Yes, of course, a doctor had a suggestion. Which is why I’ve been trying those two medications. The neurologist I saw diagnosed small fibre neuropathy, but said it wasn’t vascular, which seemed odd to me. I’ve found the Neurontin and Lyrica okay for night time but not day. The Neurontin taken in the day gives me double vision and a lessening of intellectual processes. Unforgivable! The Lyrica doesn’t seem as good at pain relief at night. And both give me chronic constipation. So, back to my GP this week, I hope, to suggest maybe a low dose of Targin (oxycodone and naloxone) which just might relieve both pain and constipation. I gather it’s commonly prescribed for rheumatic arthritis and so on.
My second mistake was to apologise for distracting this thread by talking about what to do with my feet, because, after all, coping isn’t just about a glorified version of pacing, but is also about how to cope with all our specific problems. And for me, that’s where your title comes in, Cort, about how coping helps except when it doesn’t. Because sometimes, you can’t find enough answers about how to help yourself to make much difference. So I suppose that’s where the Solitaire comes in to the picture.
Cheers, everyone.
hi cort, can you suggest anything for someone that sneezes ONCE then becomes Very ill and needs to just lie in bed for hours afterward just panting? taking anti-histimines and they don’t work while my dr. says Just Don’t Sneeze!
Wow…another fascinating and disturbing symptom….I wish I had an idea. Somehow that violent action is throwing your system for a loop. I wish I could help!
hi cort, i don’t think its another symptom, i believe its just too much like doing very little exercise either physical or mental and then your sick! its just too much for my body and i live in fear everyday wondering WHEN i’m going to sneeze again!
one time all i did was reach for a remote and the same thing happened, fell SO ill for many hours afterward. any movement whether physical or mental seems to be our enemy!
It is very interesting to learn that there is a group of people for whom the energy envelope truly works.
I had thought it worked only for Lenny, himself.
My own level is so low, that anything normal needed to be done exceeds my tiny envelope. There is no family gathering small enough or short enough to fit within my limits, for example. So I do not go to most of them, but if I miss them all, then I have no family. The price paid is high, no matter how pleasant the gathering. Resting is better than not resting, to be sure, but I am far away from normal function, and declining over time. Aside from headaches, pain is not one of my major symptoms. Cognitive functions including laying down new memories, decisiveness, getting enough sleep, those are more of a problem.
I am sick for over twenty years, so the next question in my mind is the effect over time. This little study is more of less cross-sectional, right? How the people are functioning now. Do those who can have a life of some sort by staying in their present envelope, go on to be cured or reach 80% or more daily function, even if not cured?
Sorry to be late with the comments, but that one family party took precedence over reading useful blog posts!
From reading this blog post, I too was wondering how the authors of the study define “coping.” Upon clicking Cort’s link to the paper, and briefly skimming it, I quickly found that the authors actually do indeed define it — or rather, they refer to a detailed paper defining coping entitled “Brief Coping Orientation to Problems Experienced Scale” (Carver, 1997). I highlighted this title with my cursor, right clicked and selected “search Google,” (at least that’s how it works on my MacBook) which led me to Carver’s paper in less than 30 seconds from the time I clicked Cort’s link, as well as the questionnaire used by Carver et al. and, I assume, by Brown, Allen, and Jason in the paper discussed in this blog post (which you can even test on yourself). Carver et al. define their term as follows:
“Coping is often defined as efforts to prevent or diminish threat, harm, and loss, or
to reduce associated distress. Some prefer to limit the concept of coping to
voluntary responses (Compas et al. 2001); others include automatic and
involuntary responses within the coping construct (Eisenberg et al. 1997, Skinner &
Zimmer-Gembeck 2007). Of course, distinguishing between voluntary and
involuntary responses to stress is not simple; indeed, responses that begin as
intentional and effortful may become automatic with repetition. Here we limit
ourselves only to responses that are recognized by the person engaging in them [i.e. voluntary], thus removing unconscious defensive reactions from the realm of
consideration (cf. Cramer 2003).”
Carver and his colleague go on to distinguish among multiple types of coping, including problem vs. emotion-focused coping, engagement coping vs. disengagement coping, accommodative and meaning-focused coping, as well as proactive coping. Of course, they describe each of these forms of coping and then argue that engagement vs disengagement coping is the distinction of greatest importance. I think it’s safe to say that those of us reading and commenting about research into our disease on blogs and forums dedicated to supporting those with our disease would probably be seen as demonstrating this most important engagement form of coping.
As for the results of the Brown, Allen, and Jason paper discussed in this post, I think it reiterates the utterly dire need for better treatments — most likely of a pharmacological nature. Behavioral treatments will only go so far with this illness, as is true for any other neurological and/or immunological disease. Indeed even the over-spun PACE study acknowledged thus in its conclusion (even if they told the press something else entirely). For many of us, pacing/energy envelope/etc. is simply treading water — which, you know, is better than drowning — until someone finally has a life preserver to throw at us.
Thanks Michelle for digging into that! Interesting the DePaul group suggested the disengagement might have been a positive form of coping for those in that third who were in alot of pain.
Nice analogy with the life preserver 🙂
hi cort, i have an app. with dr. lerner BUT i have been given TONS of things to take from the Fibro & Fatigue Centers and even though i put it right next to my bed, i couldn’t remember to take all that stuff so the question i need answered is Should i cancel my app. since i cannot remember anymore to take what the drs. give me? i mean i may spend MORE money from him just not to remember to take anything. see, my dr. at the center called it WEIRD DEMENTIA from CFIDS.