Symptoms of CFS/ME are not determined by activity pacing measured by the chronic pain coping inven..

[AndyPR]

Not a recommendation.

Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory
Email the author D.P. Thompson, D. Antcliff, S.R. Woby
DOI: http://dx.doi.org/10.1016/j.physio.2017.07.005

Abstract
Objectives
Chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) is a chronic illness which can cause significant fatigue, pain and disability. Activity pacing is frequently advocated as a beneficial coping strategy, however, it is unclear whether pacing is significantly associated with symptoms in people with CFS/ME. The first aim of this study was therefore to explore the cross-sectional associations between pacing and levels of pain, disability and fatigue. The second aim was to explore whether changes in activity pacing following participation in a symptom management programme were related to changes in clinical outcomes.

Design
Cross-sectional study exploring the relationships between pacing, pain, disability and fatigue (n = 114) and pre–post treatment longitudinal study of a cohort of patients participating in a symptom management programme (n = 35).

Setting
Out-patient physiotherapy CFS/ME service.

Participants
One-hundred and fourteen adult patients with CFS/ME.

Main outcome measures
Pacing was assessed using the chronic pain coping inventory. Pain was measured using a Numeric Pain Rating Scale, fatigue with the Chalder Fatigue Scale and disability with the Fibromyalgia Impact Questionnaire.

Results
No significant associations were observed between activity pacing and levels of pain, disability or fatigue. Likewise, changes in pacing were not significantly associated with changes in pain, disability or fatigue following treatment.

Conclusions
Activity pacing does not appear to be a significant determinant of pain, fatigue or disability in people with CFS/ME when measured with the chronic pain coping index. Consequently, the utility and measurement of pacing require further investigation.

Paywalled at http://www.physiotherapyjournal.com/article/S0031-9406(17)30077-9/abstract

 

[A.B.]

Pacing was assessed using the chronic pain coping inventory

This questionnaire has a pacing subscale

The Pacing scale measures the frequency of engaging in behaviors to pace activity (for
example, going a little slower) in order to accomplish tasks.

I can't find the relevant questionnaire as given to patients online, but before accepting these findings I would want to make sure that the authors are not misunderstanding what is meant with pacing in the context of ME/CFS. In my view, concepts that define pacing include: a reduction in total activity levels, taking frequent breaks and naps during the day if needed, avoiding the planning of activity, avoiding pushing on despite increasing symptoms. It doesn't mean walking 2 km every day but doing it more slowly if I'm feeling worse - that is prohibited under pacing.

Cross-sectional study exploring the relationships between pacing, pain, disability and fatigue (n=114) and pre-post treatment longitudinal study of a cohort of patients participating in a symptom management programme (n=35).

I can't quite figure out what they did (ability to concentrate is running out as I'm writing this) but it sounds like their data is rendered worthless by very high drop out rates.

The authors declare no conflict of interest but in my view a physiotherapy service implicitly has a conflict of interest.

 

[KME]

Your fears were founded, @A.B. The intervention in this study is described as follows:

"For patients willing to engage in physical rehabilitation (exercise and
graded activity) this involved either participating in a symptom management programme (see below)
or individual physiotherapy, underpinned by cognitive-behavioural principles...
The symptom management programme was based around the principles of Interactive Behavioural
Modification Therapy (IBMT), a type of cognitively-informed physiotherapy shown to be effective in
6 reducing disability in patients with back pain identified as having cognitive barriers to recovery10. As
part of the intervention participants attended weekly interactive educational sessions over a six week
period to help them understand factors contributing to symptoms and improve activity levels.
Participants were facilitated to make links between periods of under- and over-activity and the effects
this had on symptoms. They were encouraged to engage in functional activities on a consistent basis
and gradually increase levels over time. They were assisted in this by participating in goal setting
exercises, which were reviewed on a weekly basis. Problem solving exercises were used to
overcome barriers to achieving goals. Participants also took part in a graded exercise programme,
whereby they exercised to an agreed intensity and built this up over time."

I think it would be hard for a patient to reliably extricate pacing from all the graded activity and exercise that was going on.

In the discussion they reference a new pacing scale, by the same group of authors, and say
"Specifically, this APQ-26 theme includes statements such as “I did a
similar amount of activity on ‘good’ and ‘bad’ days”, in contrast to the CPCI, which assesses
strategies such as “I focused on going ‘slow and steady’ instead of on my symptoms”. It is therefore
plausible that some aspects of pacing may be beneficial, whilst others are less helpful. Further work
13 is warranted to assess whether the facets of pacing suggested by the APQ-26 are related to outcome
before the utility of pacing can be fully discounted."


After much searching I think I found the pacing scale in the appendix of a paper on fibromyalgia:

Pacing scale of Chronic Pain Coping Inventory

http://publish.uwo.ca/~mhill2/pain01pdf.pdf

An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome

Warren R. Nielson

Mark P. Jensen

Marilyn L. Hill


Appendix A. Pacing scale items


Item 7: I was able to do more by just going a little slower

and giving myself occasional breaks.


Item 18: I focussed on going `slow and steady' instead of

on my pain.


Item 34: I broke up tasks into manageable pieces so I

could still get a lot done despite pain.


Item 45: I went `slow and steady' to help distract myself

from my pain.


Item 58: I paced my activities by going `slow but steady'.


Item 67: By going at a reasonable pace (not too fast or

slow) pain had less effect on what I was doing.

 

[Sean]

Just part of the ongoing effort to deliberately conflate pacing and GET.

 

[alex3619]

This is about doing the same or more at a slower pace. Its not pacing as applied to ME patients by ME patients or appropriately experienced doctors. Its graded exercise light.

 

[RogerBlack]

Are they truly reframing all of the limitations of ME/CFS onto pain?
If pain was my only limitation, I would be ~1% as disabled by ME/CFS.

I am reminded of the success of IRA fundraising in the USA.

Claim to represent a whole group, and be wanting to help that whole group, get funding, nomatter what the people on the ground might think.

 

[Snow Leopard]

Given that they didn't actually measure activity, their conclusions are rather speculative.

 

[IreneF]

They are equating back pain with CFS/ME. If you've ever had back pain you know that it hurts to move, but if you can get yourself off the couch you'll do better in the long run. They're assuming that we're not getting better because we refuse to get off the couch.

Pacing isn't going to fix you and I don't think anyone ever claimed it would. It keeps you on a more or less even keel by staving off crashes (or flares, or whatever you want to call the aching zombie state).

 

[Valentijn]

Full text is at http://dx.doi.org.sci-hub.io/10.1016/j.physio.2017.07.005

They cite to NICE but describe CFS more like Oxford or Fukuda-lite:

Symptoms associated with CFS/ME include fatigue, sleep disturbances,
concentration difficulties and muscle pain.

They don't even claim that patients met a criteria:

People were eligible to participate if they were over 18, had been assessed by a physician with specialist knowledge of CFS/ME, all other medically identifiable causes for symptoms had been excluded and symptoms had persisted for at least 6 months.

It doesn't sound like patients from the clinic were selected randomly or sequentially, so might be assumed to have been cherry-picked. CBT/GET was given before pacing, so would have weeded out many patients by the time pacing began. Additionally, any bias introduced by therapy or therapists would have been present prior to starting pacing, so may have masked any real improvements - eg, a patient gives a biased response to CBT/GET indicating they improved 10 points, then actually improves 10 points from the later therapy but the bias has worn off, and improvement remains at 10 points.

I'm not sure how they could conceivably describe this as pacing:

Treatment intervention
The symptom management programme was based around the principles of Interactive Behavioural Modification Therapy (IBMT), a type of cognitively-informed physiotherapy shown to be effective in reducing disability in patients with back pain identified as having cognitive barriers to recovery. As part of the intervention participants attended weekly interactive educational sessions over a six week period to help them understand factors contributing to symptoms and improve activity levels. Participants were facilitated to make links between periods of under- and over-activity and the effects this had on symptoms. They were encouraged to engage in functional activities on a consistent basis and gradually increase levels over time. They were assisted in this by participating in goal setting exercises, which were reviewed on a weekly basis. Problem solving exercises were used to overcome barriers to achieving goals. Participants also took part in a graded exercise programme, whereby they exercised to an agreed intensity and built this up over time.

Apparently the quacks think ME/CFS is pretty much the same thing as Fibromyalgia. And we don't need a "specific" ME/CFS scale to measure disability. Believe it or not, actual general disability scales can be used to measure disability:

Disability was measured with the Fibromyalgia Impact Questionnaire (FIQ) physical impairment subscale, an 11 item measure of how often participants were able to engage in functional activities. The FIQ was chosen as the disability measure as it includes activities that people with fibromyalgia report as having difficulties with. At the inception of the study, no CFS/ME specific disability scale existed. Given that patients with both fibromyalgia and CFS/ME both report disabling widespread pain and fatigue12 the authors felt that the FIQ would be an appropriate measure.

Fatigue was measured with the Chalder Fatigue Scale, of course, because quacks love that stuff In regards to pacing, 4 of the 6 the questions only tie it into pain, which is likely to confuse most ME/CFS patients. We pace to avoid crashing, not pain.

As best I can tell, the pseudo-pacing patients were compared to patients who refused any physical rehabilitation. So instead of comparing those allocated to pseudo-pacing against those allocated to CBT/GET, they compared pseudo-pacing to patients who said "no fucking way" to both CBT/GET and pseudo-pacing. Why bother to allocate any patients to CBT/GET instead of pseudo-pacing if the CBT/GET patients aren't used as some sort of control?

Now the weird stuff. There is no Table 3, and in the results they claim there is an association between pacing and reduced symptoms after all:

Correlations between the variables are shown in table 3. There was a weak but statistically significant correlation between greater pacing and lower levels of pain and disability.

Ahh, they mangled the data to make the correlation disappear:

Although correlations were observed between pacing and pain and disability, these associations were weak and were not apparent in the regression analyses. This would suggest that activity pacing is not significantly associated with these variables.

They didn't measure disability in ME/CFS patients, and pacing is used to avoid crashes, not pain or fatigue. They used the Fibromyalgia Impact Questionnaire, which specifically instructs patients to "check the box that best indicates how much your fibromyalgia made it difficult to perform each of the following activities during the past 7 days." There's no indication that they replaced "FM" with "CFS" in the instructions, so most CFS patients would not indicate that FM was causing them any such disability :

Moreover, the current findings may help to explain why previous studies which have investigated pacing interventions have found that they do not improve outcomes beyond standard medical care9: if pacing is not significantly associated with pain, disability or fatigue, strategies encouraging its use are unlikely to improve outcomes.

This is absolutely not pacing, and not even GET-moderated-by symptoms. It's pure GET:

In the current study participants were encouraged to engage in exercise and activity on a regular basis and gradually build the total amount of activity over time. Moreover, no limits were placed on total amounts of activity and participants were not advised to limit activities to compensate for increases in others.

That's because ME/CFS has never been about fatigue:

Examination of the other variables explored in this study revealed that fatigue was not strongly associated with disability. This is surprising given that fatigue is the cardinal feature of CFS/ME.

They conclude that the main problems are catastrophizing and fear-avoidance behavior, hence those probably need to be addressed

In summary, these are complete idiots who have no idea what pacing is, and/or they have put a lot of effort into spinning pretty much every aspect of the study. I suspect this was never intended to be a pacing study, but got relabeled as such for the benefit of NICE. The data was collected from 2008-2010, which means they sat on it for one helluva long time. No apparent protocol was published.

 

[Valentijn]

Basically, this paper does not involve pacing as a therapy. It involves pacing as a primarily pain-related outcome measurement on a questionnaire. The therapy was interactive behavioural modification therapy (IBMT), which seems to be a form of CBT, and that is what failed to improve the outcomes: pain-pacing, pain, fatigue, and fibromyalgia-disability.

Accordingly, both the title and abstract, where pacing is also described is a treatment, are misleading and bordering on academically dishonest.

 

[AndyPandy]

 

[trishrhymes]

So we have a study carried out by physiotherapists on patients who might or might no have ME/CFS, using a treatment involving GET with a bit of 'taking things slowly' and calling it pacing.

So they don't know what ME is, and they've no idea about the existence of PEM and they don't know what ME pacing is.

What a shambles.

 

[AndyPandy]

This stuff is so pervasive. My dietician (who is a good dietician I think) finished off our latest appointment with unsolicited advice about me increasing exercise, including pool based exercise.

Also an exercise program with a physiotherapist. Shot that advice down in flames quick smart. She's probably still smouldering.

 

[Dolphin]

The points I was going to make have generally been made.

One probably small point:

They subdivide the 11-item Chalder Fatigue Scale (likert scoring) into mental and physical fatigue. Normally this is 4 questions and 7 questions 0-12 and 0-21. They claim they use 0-15 and 0-18. Anyway, with either combination you can't get the baseline averages they got (mental fatigue: 14; physical fatigue: 19).

 

[Dolphin]

In contrast, a large RCT investigated the effects of adaptive pacing therapy (APT), GET, cognitive behavioural therapy (CBT) and standard medical care (SMC) in patients with CFS/ME9. APT is a form of pacing which advocates modifying activity so that perceived finite amounts of energy are not exceeded. The results demonstrated that APT was no more effective than SMC, and less effective than CBT or GET. However, the study did not include a measure of pacing, meaning it was unclear whether APT actually affected patients’ ability to pace, or whether pacing (when defined as APT) is not an effective treatment strategy. Indeed, other authors have suggested that alternative pacing strategies may be more effective than APT8.

This is an interesting point on the PACE Trial, though I wouldn't recommend the pacing measure used in the current study (i.e. Thompson et al.).

 

[Dolphin]

One thing which I am not sure is that clear from the text is that this physiotherapist-led intervention didn't lead to an improvement in pain levels.