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).
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.
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.
A cluster analysis revealed three subsets of patients based on their PEM, energy envelope maintenance and physical functioning.
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.
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.
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.
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone