Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue, 2019, Antcliff et al

One of my problems with "pacing" or anything else taught by health practitioners to ME patients, is that they always insist on having the goal of making the patient better, even when that might not be possible.

Being met with that attitude is really distressing, and makes the patient feel like they have the responsibility of getting better, and if they can't they must be doing something wrong.

Even true pacing, where you aren't supposed to exceed your limits, is harmful if it carries the assumption that you must improve if you do it right.

I was at a rehabilitation center for ME, where they taught pacing and adapting to your own limits. And I was made to predict how long it would be until I was able to do more, because "meaningful activity" was the goal.

They wouldn't listen when I said I couldn't know when or if I would improve, and that just being at the rehabilitation center would probably make me crash. (Been a year and still not regained the functioning I lost, despite "pacing" well).

I think health pracitioners teaching therapies to ME patients with the goal of improving the patients functioning is harmful, when we don't know what it is that improves ME patients functioning. We don't know that staying within their limits will always make an ME patient better.

I think when patients need support from health professionals, it shouldn't be packaged "therapies" that tend to be hyped up more than they deserve, but rather just listening to the patient and believing them when they say what their needs are.

And when we don't know how to make ME patients better, I think the goal should be the patient's well-being. And not doing more harm.

 

Because people (patients) are machines; our brains and intuition and thoughts aren't to be trusted. Emotions n stuff.

If it fits neatly into an algorithm, by god, that's where it's going to stay (GET, etc.)

 

I appreciate there will be some medical conditions where patients can be safely pushed beyond what they feel capable of, and sometimes need to be for their own good. Perhaps when recuperating from an injury or something. The huge mistake, bordering on institutional arrogance due to ignorance, is for medical professionals to presume pwME require the same approach, and to not see beyond what seems like the 'obvious'; it is time for all medical professionals to get past this blind spot. It is really quite offensive, let alone dangerous and professionally unethical, to presume pwME also require to be pushed beyond what they feel they can do. In the former case it can strengthen and mend, in the latter it can be highly destructive, both physically and mentally.

 

It is unfortunate that the study doesn't say how many of the 97 interviewed healthcare professionals provided care for ME/CFS patients (or did I miss it somewhere?). As far as I can see, they only mention the number of trusts that they could contact: "A total of 115 NHS trusts in England were identified as providing persistent pain services, and 53 provided CFS/ME services."

As I understand it, pacing in the treatment of chronic pain and ME/CFS have a different history and a different meaning. In chronic pain, it has a history of operant conditioning as proposed by Fordyce at the end of the 1970s. It was seen as a means to reach a goal, usually to increase levels of physical activity. Pacing involved taking things slow but steady, breaking up activities in smaller parts, setting targets, using a plan or routine to keep the patient going etc. The other tradition is energy conservation, which was proposed for patients with neurological conditions such as MS. This involved balancing activity and rest, setting priorities, delegating tasks and using assistive devices such a wheelchair. The idea was to help patients cope with limited energy and enable to keep doing meaningful activities. I think the version of pacing used in ME/CFS is more in line with this tradition.

Antcliff's goal of coming up with one consensus definition of pacing to use in both chronic pain and ME/CFS doesn't seem realistic as the term means different things, depending on the patient population. On several aspects, the meaning is even contrary. As there are many more patients and therapists in the field of chronic pain, working towards a consensus means that this version would become the standard. Giving the responses of the healthcare professionals in this study, I suspect that the majority were therapists specialised in treating chronic pain, not ME/CFS.

Even if quite a few ME/CFS healthcare professionals participated, there might still be a problem of representation. The majority of respondents were physiotherapists (49.5%) or occupational therapist (33%). They might have a view of pacing in the context of rehabilitative treatment of ME/CFS (which is what NICE advises) and where their guidance as a therapist is considered important. Patients and experts clinicians probably have a different view. I think Goudsmit wrote that pacing is not intended as a treatment but that it is a relatively simple form of self-management, that can be explained by a nurse, GP or even a factsheet of patient organisations. That is an aspect that physiotherapists might not be too fond of emphasising, as it could make them redundant or less important in the care of ME/CFS patients.

I also find it frustrating that the authors are mixing up two things: (1) what is the consensus on the aspects of pacing among therapists and (2) what is the most effective form of pacing. They cite the PACE-trial a few time. I don't think they are fully aware of the criticism of the trial and of the inadequate version of pacing used in it.

 

This. (I reformatted @Trish’s post for my own emphasis and {interjected my own words} with curly brackets)

 

It's notable that none of the references to "boom-bust" or "overactivity–underactivity cycling" involve CFS patients. The reference to "Effects of activity pacing in patients with chronic conditions associated with fatigue complaints: A meta‐analysis" only mentions a narative review of Exercise in MS patients with no direct evidence.

 

The authors write that "conditions of chronic pain/fatigue may be treated together, using holistic interventions that include physical and psychological therapies." The reference that they use for this is the DSM-5 (weird!) and Tavel, M. E. (2015). Somatic symptom disorders without known physical causes: One disease with many names?.

Has anyone read this short opinion piece? It's like it was written in the early 1990s: the authors argue that CFS is really just a form of depression, that "patients may be best cared for by physician generalists that are well-grounded in psychiatric disorders." He also raises the "intriguing question whether placebo effects should be purposely utilized in managing these patients."

 

It's like it was written in the early 1900s, where those ideas come from, unchanged since.

 

I have submitted a comment on this study to Musculoskeletal Care, but it was rejected because "The journal does not accept commentaries based on the review/opion of one author's work." The journal didn't explicitly say they accept letters, so I knew this could happen. I wanted to give it a go anyway because I think this is an important issue, one that could lead to a lot of confusion in the future. I've now published my comment on Pubpeer which also notifies the authors. I hope they'll take the feedback seriously.
https://pubpeer.com/publications/7E...m_medium=BrowserExtension&utm_campaign=Chrome



Pacing: one term, many meanings

Antcliff et al. (2019) explored the opinion of 92 English healthcare professionals on the use of activity pacing for conditions of chronic pain and fatigue. The authors' objective to provide a framework to standardize pacing however seems unlikely to be successful. It has been noted that pacing represents “a variety of differing and, at times, contradictory concepts” (Jamieson-Lega, Berry, & Brown, 2013).

Broadly, two main traditions exist (Nielson, Jensen, Karsdorp, & Vlaeyen, 2013). One has a history in operant conditioning and is mostly used in the treatment of chronic pain. It consists of a preplanned strategy that is time- or quota-contingent with the aim of breaking the association between resting behavior and symptoms. It involves dividing tasks into manageable parts, doing things slowly but steadily, and building a consistent routine with the goal of achieving a target, often an increase in (physical) activity (Nielson et al., 2013). The other main tradition is energy conservation management as used in patients with a neurological condition such as multiple sclerosis. Here pacing can be symptom-contingent as it is mainly aimed at avoiding overexertion and relapses while engaging in meaningful activities. It involves balancing activity and rest, delegating tasks, setting priorities, and using assistive devices (Blikman et al., 2013).

The opinions surveyed by Antcliff et al. only reflect the first tradition and exclude other approaches to pacing, most notably the version used by patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The hallmark symptom of ME/CFS is no longer considered to be fatigue but post-exertional malaise (PEM), a marked symptom exacerbation when patients exceed a certain activity level. Patients use pacing to limit the effects of PEM while remaining as active as possible (Goudsmit, Nijs, Jason, & Wallman, 2012). Surveys have consistently shown that this is the preferred form of activity management for persons with ME/CFS (Geraghty, Hann, & Kurtev, 2017). It is advised by the Centers for Disease Control and Prevention (CDC) in the United States and mentioned in the National Institute for Health and Care Excellence (NICE) guideline for ME/CFS in the United Kingdom.

It is unclear why Antcliff et al. insist on a standardized framework of pacing for both chronic pain and ME/CFS as the versions used in these conditions are in many respects contradictory. Indeed, when Antcliff and colleagues developed the activity pacing questionnaire several panelists suggested “that it might be difficult to develop a generic questionnaire for both chronic pain and fatigue” (Antcliff, 2014). One participant noted a conflict between “pacing to manage/reduce symptoms, and pacing in order to optimize function” (Antcliff, 2014). Unfortunately, such voices are underrepresented in the studies by Antcliff et al. Most of the healthcare professionals surveyed are physiotherapists and occupational therapists who provide pacing as part of rehabilitative interventions such as graded exercise therapy (Antcliff et al., 2019). Their view on pacing seems different from the version used by ME/CFS patients and expert clinicians (Goudsmit et al. 2012).

No reason has been provided for why the treatment of ME/CFS and chronic pain should be similar. Any attempt to standardize pacing for both conditions will most likely increase confusion, rather than decrease it. Going forward, I would advise using the broad definition of pacing proposed by Jamieson-Lega et al. (2013) namely “an active self-management strategy whereby individuals learn to balance time spent on activity and rest for the purpose of achieving increased function and participation in meaningful activities.” This can then be further refined depending on the specific illness or treatment goal. Pacing is a single term, but it has many meanings.

References

Antcliff, D. (2014). The Development of an Activity Pacing Questionnaire for Chronic Pain and/or Fatigue. (Doctoral dissertation). University of Manchester, United Kingdom. Retrieved from: https://www.escholar.manchester.ac....-ac-man-scw:227500&datastreamId=FULL-TEXT.PDF

Antcliff, D., Keenan, A. M., Keeley, P., Woby, S., & McGowan, L. (2019). Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue. Musculoskeletal Care. https://doi.org/10.1002/msc.1421

Blikman, L. J., Huisstede, B. M., Kooijmans, H., Stam, H. J., Bussmann, J. B., & van Meeteren, J. (2013). Effectiveness of energy conservation treatment in reducing fatigue in multiple sclerosis: a systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 94, 1360-1376. https://doi.org/10.1016/j.apmr.2013.01.025

Jamieson-Lega, K., Berry, R., & Brown, C. A. (2013). Pacing: a concept analysis of the chronic pain intervention. Pain Research and Management, 18, 207-2013. http://dx.doi.org/10.1155/2013/686179

Geraghty, K., Hann, M., & Kurtev, S. (2017). Myalgic encephalomyelitis/chronic fatigue syndrome patients' reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology, 24, 1318-1333. https://doi.org/10.1177/1359105317726152

Goudsmit, E. M., Nijs, J., Jason, L. A., & Wallman, K. E. (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disability and Rehabilitation, 34, 1140-1147. https://doi.org/10.3109/09638288.2011.635746

Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. (2013). Activity pacing in chronic pain: Concepts, evidence, and future directions. Clinical Journal of Pain, 29, 461–468. https://doi.org/10.1097/AJP.0b013e3182608561

 

Stopping an activity when symptoms increase is still not the ideal baseline for pacing. I would say that much ideal pacing is preemptive ie stopping activity before symptoms increase. Chunking an activity into a number of parts with rest breaks is often the only way to complete it.

 

As @PhysiosforME we're in the process of writing to the authors to try and raise some of our concerns about exactly the points you have raised - just wanted to ask if you are happy if we steal some of your wording to use in our email? Like you, our concern is that it could well cause confusion in the future.

 

@PhysiosforME

I would indeed be happy if you steal some of my wording.

Thanks very much for your efforts on this. Please let me know if I can be of any help.

 

brilliant thank you - we will of course update you if/when we get a response!

 

This is utterly stupid.

"An online survey across pain/fatigue services in English National Health Service trusts explored healthcare professionals’ opinions on the types/uses of pacing, aims, facets and perceived effects."

The only thing this study could be used for, is documenting just how wrong the opinion of health care workers is on this subject. As such, it could actually be useful I think - if the follow up now was doing the same questionaire on patients opinion and effects of the treatments more or less forced upon them

Are the questionairs public? Could they be used doing a patients survey?

 

From a quick scan of the paper they don't provide the questionnaire, possibly it could be reverse engineered from the results that they report but without asking the authors we wouldn't know if there was anything missing.

 

The authors have done some other work linked to this (some of which has been published in our physiotherapy journal and which we are working our way through as we compose our response to the authors). One of these includes a qualitative focus group with some patients (16 in total - 4 of whom were CFS/ME - no information about diagnostic criteria)
I didn't spot the questionnaire but I did find the protocol for the next piece of work https://clinicaltrials.gov/ProvidedDocs/85/NCT03497585/Prot_SAP_000.pdf

You might want to save your energy and not read it as it is a bit depressing to see how they include ME in with chronic fatigue with very little apparent understanding of the differences - I think that much was apparent from the questionnaires for professionals article.

We are going to write and highlight the difference between chronic fatigue and ME and highlight the importance of diagnostic criteria if looking at ME to try and avoid their work being linked to ME in the future as well - there are actually so many things that we want to flag the list is quite long!

 

I have tried to find where you can post comments on the article (just in case they chose not to reply to our email ) - are you able to point me in the right direction as I can't find anywhere obvious!

 

Not sure what you mean. There isn't a rapid response section for this article. I have sent my letter to the editors of the journal but they responded that "The journal does not accept commentaries based on the review/opion of one author's work."

So then I have posted my comments on Pubpeer which is a website where people can comment on scientific articles. People who have downloaded the Pubpeer extension to their browser will automatically see the comment show up anytime the article is mentioned no matter on which website.