Experiences of daily activity in CFS/ME and their implications for rehabilitation programmes.

[katcoff]

Wow, i don't wanne be rude but i dont' no any ME-patiënt who can exercise so much as you can. I don't even know healthy people who exercise so much. Did you ever have a 24 or 48 repeated exercise test (CPET)? i would like to know how much your Vo2max and AT thresshold would be. When i only exercise 5 minutes on a bike i get PEM.

First, I worked up to this point gradually over decades. Second, I have a very high threshold of pain as per an electroshock experiment I was in as a youth - above the legal limit, so I can push myself. And yes, Dr. Bell diagnosed me with CFS - I have typical symptoms.
Finally, I have no idea what those abbreviations mean you used. I had a treadmill stress test a few years back for my heart and I did well.
I'd really like to see the vagus nerve hypothesis investigated so that maybe I can experience the cure before I die.

 

[biophile]

I understand there are different definitions of "rehabilitation". I am a little jaded from all the spin surrounding recovery and rehabilitation, since I fell for it before properly evaluating the evidence and was stung as a result. I do not like how certain terms and expectations are being watered down to save face over their failed approach (not by Firestormm, but by those promoting behavioural hypotheses and cognitive-behavioural modification therapies for CFS).

Unless there is convincing evidence that "recovery" and "rehabilitation" (even partially, let alone complete) are actually occurring due to therapy, the terms should not be used. Otherwise it is palliation, adaptation, coping, management, etc. A complete recovery means returning to the health and function that would exist without CFS, it is as simple as that.

Re expectations about returning to premorbid function. IIRC, whenever CBT/GET proponents talk about not expecting to return to premorbid function, it is usually framed in terms of not repeating the lifestyle that (supposedly) contributed to CFS in the first place, rather than in terms of getting older. I doubt that any reasonable patient, who for example is 40 years old and has been ill for 20 years, would seriously expect to return to the heath and function of a 20 year old.

Long ago I came to terms with the possibility that I may never completely recover or even improve at all, but this does not mean I would consider a restructuring of my life without improvement as a "rehabilitation". Patients can come to terms with their pervasive impairments and ongoing suffering all they want, that is not a recovery either, that is an adaptation.

 

[Firestormm]

I was pondering the use of the term 'rehabilitation' in connection with imprisonment last night. I wonder if any parallels might be drawn or if the use of the term is dependent on context and on the bias of the person employing it?

Is a prisoner considered rehabilitated until he commits another offence? Is a patient until he suffers an unmanageable relapse?

I take on board the point about management and coping methods, and I do agree. I believe that the NICE Guideline refers to such therapies as (though not using the term rehabilitation from memory) 'management strategies' and I think I would concur.

Also, do please note, that my own therapy comprised 'Graded Activity Management' and CBT and I still maintain that the methods/techniques employed by the therapists are dependent on those therapists i.e. clinical delivery differs depending on whom you see and on the individual you are. But as I said before, my experiences are limited I fully appreciate and understand and are not representative.

Honestly, I don't believe there can be a 'manual' approach to management on an individual basis or on a disease specific basis except in general terms. I also maintain that CBT is far from 'brain washing' and much more a common sense approach to any management of chronic illness - but again I do appreciate this is very much dependent on the therapist who is delivering the alleged treatment and on the individuals reception of it - as well of course in it's adjudged effective/usefulness.

I would much rather take a pill, as I suspect we all would

 

[MeSci]

First, I worked up to this point gradually over decades. Second, I have a very high threshold of pain as per an electroshock experiment I was in as a youth - above the legal limit, so I can push myself. And yes, Dr. Bell diagnosed me with CFS - I have typical symptoms.
Finally, I have no idea what those abbreviations mean you used. I had a treadmill stress test a few years back for my heart and I did well.
I'd really like to see the vagus nerve hypothesis investigated so that maybe I can experience the cure before I die.

Most of us CAN push ourselves, regardless of pain. We just regret it bitterly when post-exertional malaise reminds us why we shouldn't.

@Firestormm, maybe many/most of us would rather take a pill, but unless it were a natural one that corrected the underlying problems (e.g. leaky gut, inflammation, immune dysfunction, etc.) or a long-tried-and-tested pharmaceutical that was free of significant adverse effects, I wouldn't.

As has been said repeatedly, the CBT that is commonly used as part of the CBT/GET package IS brainwashing. It is designed to disavow us of our 'false illness beliefs' and alleged 'kinesophobia'.

 

[Valentijn]

I was pondering the use of the term 'rehabilitation' in connection with imprisonment last night. I wonder if any parallels might be drawn or if the use of the term is dependent on context and on the bias of the person employing it?

Is a prisoner considered rehabilitated until he commits another offence? Is a patient until he suffers an unmanageable relapse?

That's another context where the word "rehabilitation" is badly misused. Yes, it's the lofty goal espoused by politicians, but the (expensive) actions necessary to fulfill it are rarely undertaken. Prison is primarily punitive, to promote a desire to avoid it. It is not giving people the skills or motivation necessary to live successfully without crime, and in fact often has the opposite effect, in instilling a prison-culture into inmates and making it harder to find legal employment due to having a record.

 

[Dolphin]

I've just read the full paper.

As others have suggested, these aren’t big CBT/GET proponents and I think there are a few useful enough points against such a view.

However, I think, unfortunately readers would come away with the impression that patients were pathological in their pre-illness behaviour while I imagine a lot of people in society if they were to become ill with ME would think that their previous lives were very busy and might give similar descriptions of their pre-illness lives and behaviours.

At the same time, there could probably be something useful for some people in what they say about having to adjust with the illness and that previous modes of behaviour may not be suitable. But they never mention any biological findings and generally I don’t think one is given strong enough reasons for people to understand that the illness is different from being healthy; instead, many could read it as simply the patients have pathological behaviour patterns and all they need to do to be well is change such behaviours and act normal.

I’ll now post a few quotes/extracts.

 

[Dolphin]

They highlight somewhat conflicting findings in the field.

Early cognitive behavioural interventions used the assumption that low activity levels were linked to an avoidance of activity, due to fear of increasing symptoms [35,36]. From then on the concept of activity or exercise avoidance as a central construct of CBT and graded exercise (GET) programmes has led to continuing conflict over the utilisation of these approaches in this condition. This dichotomy is demonstrated by reactions to the PACE Trial, a randomised controlled trial of CBT, GET and adaptive pacing [4]. Although pacing is a strategy that is generally supported by patient groups and numerous patient surveys [3], the meaning of pacing is individually interpreted. In the PACE trial, Adaptive Pacing Therapy (APT) was defined as symptom contingent with the purpose of avoiding exacerbating symptoms. The results showed that this had limited effect, whilst CBT and GET showed greater improvement in clinical outcomes. Yet, this remains contradictory to the experiences of many people with CFS/ME and patient groups, thus pacing remains a term that is widely used but poorly understood [37]. Furthermore, there is increasing disagreement as to whether patients do experience an exercise phobia [38] and whether it is activity avoidance that is mediated by CBT [39]. If activity avoidance is a core construct for maintenance of the condition, how does this correlate with research identifying premorbid patterns of over-activity and action proneness? Although this may explain the minority of patients with pervasively passive activity patterns found by van der Werf et al., how would this explain the fluctuating patterns of activity described by many patients [5]?

38. Gallagher AM, Coldrick AR, Hedge B, et al. Is the chronic fatigue syndrome an exercise phobia? A case control study. J Psychosom Res 2005;58:367–73.

39. Wiborg JF, Knoop H, Stulemeijer M, et al. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med 2010;40: 1281–7.

 

[Dolphin]

Headings
- Life before illness – constant motion

- Doing everything/being busy

- Starter finisher

Reasons given for constant motion

- Achieving goals

- A choice to be busy

- Emotional responses linked to being active

- Responsibility or duty

- Pushing to the limit

Extract:

Annette had found pushing to her limit a helpful response when experiencing depression but it had an opposite effect with her CFS/ME

- Expectation of activity

When Char was a manager she was frustrated when her employees were not active. Ann described how her belief that people should be doing meant that she continued going into work as a teacher when she started to become unwell until she was forced by others to take time off.

So not lazy/similar (a lot of it would be similar).

- Striving to do better

 

[Dolphin]

Other issues related to constant motion

For a couple of participants, the experience of constant motion lasted for only a specific time period, particularly related to work patterns.

They make this sound pathological but I think a lot of jobs don't involve a lot of down time.

 

[Dolphin]

They give some provisos/perspective:

Although findings cannot be generalised from a small qualitative study, the findings are consistent with the concept of action proneness prior to the onset of health problems [19]. It could be argued that this is an idealised sense of activity, particularly when reflected upon from the perspective of illness and may be common across all ill health experience. Especially as being active is a central characteristic for occupation within Western Society [52]. The need to refute the societal stigma of laziness given to CFS/ME may have also influenced how participants presented their behaviours.

This brings up the issue that it would have been more interesting if they used controls with other conditions.

 

[Dolphin]

This highlights issues some likely have to deal with

Participants expressed concern that the state of ‘‘doing nothing’’ could be seen as a choice and not a physical state.

‘‘I didn’t want to sound lazy and say listen I can’t get out of bed and I don’t want you to think I’m lazy or anything, but I literally can’t’’.Debbie

Tracy described how others reacted to her lack of activity by encouraging her to try and go out, which implied to her their assumption that if she made an effort she could achieve it. Participants specifically made the point that they didn’t want or choose to be like that

 

[Dolphin]

Experiencing doing nothing

All of the participants described changes in their experiences of their self-worth or identity in relation to this perceived inactivity. The key areas that emerged included; 

- Loss

Some participants compared their current level to previous levels and described feeling grief or anger at their inability to function. This compromised their active self identify, as described in another study [54]. Sometimes, the condition was given its own identity, as Amy said ‘‘the ME robbed me of my life’’. 

- Sense of limitation, negative emotions and control

Although physical limitations had been expected, many participants felt it was harder to cope with the cognitive and emotional symptoms. Feelings were expressed of frustration, confusion, anger, and guilt in response to inactivity. There was a loss of sense of control over life and that the condition dictated activity participation.

Tracy was the only participant to mention fear related to occupation. She began to feel panic around people and became frightened of going outside. She saw this as a consequence of having to isolate herself because of her lack of tolerance to sensory stimulation, such as light. In concordance with a previous qualitative study [5], none of the participants described a fear of triggering increased symptoms, but there was an acknowledgement that increased symptoms would follow increased levels of activity. Some participants gave examples of activities they had chosen to do knowing that this would result in deterioration in their health, such as Tom walking to meet his sister when she was in distress. This adds to the increasing evidence against a generalised activity or exercise phobia in CFS/ME [38].

The negative connotations of doing nothing also overlapped with the concept of rest. Rest can be a state of physical inactivity and many participants, who could still maintain activity resisted incorporating this within their daily routines. Participants conceptualised rest as being weak, equated it with waiting and felt to lack achievement. When asked to define the difference between the two, Ann categorised rest as positive in comparison to the negative idea of doing nothing, but the only example she could give of rest was relaxing on holiday. Therefore, rest was restricted to being a positive occupation only in an environment where the demand was externally limited and she considered it permissible to stop activity. Several participants mentioned the need to earn rest. Consequently, as their activity levels were now lower they perceived it was not acceptable to rest. This was a barrier for Annette in incorporating relaxation in her life as she said it was difficult ‘‘to deliberately do nothing’’.

 

[Dolphin]

Responding to inactivity – boom and crash

[Extract]

Char believed that this pattern was part of the psychological process of denial of the illness and her emotional reaction to her life falling apart. Throughout the boom and crash pattern participants stated there was a prominent desire to be active (constant motion) and an aversion to being inactive (doing nothing), driven by internal beliefs and standards around activity and societal expectations of participation.

I think this is an issue for some people. But they pathologise it I think. A lot of the boom and crash is from doing normal activities that people would normally have done with no difficulty before the illness, and others might expect them to be able to do. Or normal activities that are hard to avoid like the examples biophile gave of doing a shop or collecting your post.

If there was more acceptance of ME as a biological condition where GET/CBT/doing more wasn't the answer, and more supports for patients in various forms (with money, paid carers/assistants, general attitudes, etc.), people would probably find it easier not to overdo it.

 

[Dolphin]

This study has implications for rehabilitation as participants made associations between rest and inactivity and consequently rest was also predominately linked with negative emotions and perceived as serving no purpose in improving symptoms. This would be expected, as a characteristic feature of CFS/ME is that the fatigue does not improve with rest, however this creates a dilemma for people when asked to introduce rest periods [2]. Long periods of sedentary activity, as found by Chastin and Granat [39], are therefore experienced as frustrating and wasteful. This could influence a patient’s compliance with rest and relaxation regimes and would indicate that attitudes towards rest need to also be explored.

I find the underlined sentence odd. The authors seem to suggest more rest could be useful but then say with this that rest won't help. I think this may be influenced by the pro-CBT/GET environment in the UK.

 

[Dolphin]

Conclusion

[..]

Within this study the fear of doing nothing was more prominent than the fear of increasing symptoms, which these participants expected and planned for.

What they found is the opposite of what the CBT/GET model of the illness is.

 

[Dolphin]

Therapy programmes that apply a time contingent approach to pacing [56] need to consider the impact of ‘‘starter finisher’’ behaviours and past expectations of activity levels. If the time period given to a task does not correspond to the time required to complete a task, people with this imperative may avoid undertaking such tasks or increase their speed to enable completion within the given time frame. Interventions need to help people adjust from their past active identity and the emotional impact of loss that can reinforce patterns of boom and crash activity. Strategies need to increase control and self-management of activity, which may involve changing patterns and types of activity in addition to considering quantity.

I thought this was an interesting enough observation about a possible problem with time contingent pacing for some. Generally some of these points could be useful enough, if the CBT/GET model (or other models that pathologise behaviour too much) didn't predominate.

 

[Dolphin]

Concluding paragraph:

With CFS/ME, there appears to be a societal perception of those who experience the illness, with a historical stigma around laziness and avoidance of activity. Yet this study, alongside others, illustrated an experience of constant motion before the onset of illness and a continuing battle to increase activity levels during the illness, leading to a recurring cycle of symptoms. Participants had strong negative reactions to inactivity, which they felt changed their sense of identify and self-worth. This pattern may not be restricted to the condition of CFS/ME, but with an increasing desire within society for human beings to match the productivity of constantly moving machines, the implications for health and well-being need to be considered.

 

[Esther12]

Thanks for the excerpts and comments

This brings up the issue that it would have been more interesting if they used controls with other conditions.

Although controlling for the stigma around CFS would probably be difficult.

In some ways, I can find papers like this frustrating because of the climate around CFS - if they're not out to make money from CBT/GET, I think they should be more condemning of the way the efficacy of those interventions has been spun!

To me, the stigma mentioned at the start of the final paragraph makes it very difficult make claims about what it was that was "leading to a recurring cycle of symptoms." Patients stigmatised as lazy are likely to try to describe themselves in ways which make them sound like motivated go-getters... not surprising, or good reason to think that they're not really just as lazy as anyone else.

re the boom and bust thing: I thought there was a paper showing that CFS patients did not have any particular problem here, and google found this comment:

Tom Kindlon (2010-07-23 15:35) Irish ME/CFS Association - for Information, Support & Research

As Maes and Twisk highlight[1], one part of the Harvey and Wessely model is the contention that CFS patients engage in “boom and bust” activity patterns. This claim has been repeated so often by various individuals that it has been seen as fact by some. But is there actual evidence for it?

What many people may not be aware of is we do have data on the issue. A Dutch study tested a relatively large cohort of CFS patients (n=277) along with 47 healthy controls [2]. The research used actometers to provide an objective measure of activity over 12 days. It found: "Compared to healthy controls, no indication was found that the CFS patients as a group were characterised by a high number of large day-to-day fluctuations in activity."

References:
[1] Maes M, Twisk FN. Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways. BMC Med. 2010 Jun 15;8:35.

[2] van der Werf SP, Prins JB, Vercoulen JH, van der Meer JW, Bleijenberg G. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res. 2000 Nov;49(5):373-9.

I thought there was also a more recent paper too, but couldn't see it. Looking for it pointed out that the paper being discussed in this thread also cited the van der Werf one.

Has there ever been any evidence that CFS patients have any particular problem with 'boom and bust' behaviour?

 

[A.B.]

Has there ever been any evidence that CFS patients have any particular problem with 'boom and bust' behaviour?

Probably this has just been a fantasy all along, borne from patients reporting fluctuating energy levels.

 

[WillowJ]

I find the underlined sentence odd. The authors seem to suggest more rest could be useful but then say with this that rest won't help. I think this may be influenced by the pro-CBT/GET environment in the UK.

My guess is that the Fukuda definition, in an apparent effort to exclude overtaining or anything else that could be entirely cured with rest and support (the "clarification of ambiguities" paper made clear they were not discussing PEM), says, "not substantially relieved by rest" and I think this is confusing to people who don't understand the illness.

What they need to grasp really isn't all that difficult; just isn't well explained in what they've been reading: a vacation or other rest can't fix a long-term patient, but rest does reduce certain symptoms day to day, and enough rest may make a modest difference over months.