Long-term follow-up of multi-disciplinary outpatient treatment for CFS/ME (Derby, UK)

[Bob]

I think this may be an assessment of NHS specialist outpatient services for ME/CFS in Derby (UK). The supposed 'multidisciplinary' 'treatments' were based on CBT, GET and pacing.


Long-term follow-up of multi-disciplinary outpatient treatment for chronic fatigue syndrome/myalgic encephalopathy
Houlton A, Christie MM, Smith B & Gardiner E
Received: 5 Jun 2014
Accepted: 18 Nov 2014
Published online: 07 Jan 2015
DOI:10.1080/21641846.2014.993873
http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.993873

Abstract
Aims: The current study evaluated the long-term effectiveness of a multi-disciplinary approach to chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) in a UK outpatient service. Methods: A longitudinal questionnaire survey was posted to 300 patients, incorporating measures of fatigue, physical functioning, mental health, and pain. Outcome measures administered at baseline (prior to service use) were compared to assessments at discharge, and at follow-up (average 34 months post-intervention). Results: Linear mixed modelling showed that fatigue, physical functioning, and depression significantly improved, although the improvement was reduced for fatigue, physical functioning, and pain at follow-up. Gainful employment had a significant positive association with most measures. Conclusions: The targeted multi-disciplinary service appeared to be at least somewhat effective long-term, and highly acceptable to patients. Patients appeared to benefit from individual and group approaches that combined cognitive behavioural therapy, graded exercise therapy, and pacing.

 

[Bob]

There is no control group, as far as I understand from the abstract, in which case the outcomes are meaningless.

It's worth noting that at long-term follow-up (which averaged 34 months post-intervention) there were no significant improvements, from baseline, in fatigue, physical function or pain. (Or, at least, that's my interpretation of the abstract, but their wording is slippery.)

Where the abstract says: "The targeted multi-disciplinary service appeared to be at least somewhat effective long-term...", this does not apply to measures of fatigue, physical function or pain, if improvements were non-significant. Perhaps it applies to mental health only.

 

[Esther12]

You can get the longer phd for this from here: https://lra.le.ac.uk/handle/2381/11051

@maxwhd posted it, along with some comments:

https://twitter.com/maxwhd/status/553577881654550528

 

[Bob]

You can get the longer phd for this from here: https://lra.le.ac.uk/handle/2381/11051

@maxwhd posted it, along with some comments:

https://twitter.com/maxwhd/status/553577881654550528

Thanks for that, Esther. I'm not sure if the published PHD is identical to the final version of the published paper.

For example, the PHD says:
"The findings were that: fatigue, physical functioning, pain, anxiety and depression measures improved significantly as time increased, with improvements being maintained or increasing at the follow up point."

Whereas the abstract says:
"Linear mixed modelling showed that fatigue, physical functioning, and depression significantly improved, although the improvement was reduced for fatigue, physical functioning, and pain at follow-up."

 

[Esther12]

Oh yeah.

Ta Bob, I've not had a close read of either.

 

[Bob]

The PHD (that Esther linked to) says: "When other variables were controlled for, employment had a significant positive impact on levels of fatigue, physical functioning, depression and pain."

This seems like a slippery conclusion to make. I would have said that levels of fatigue, physical function, depression and pain correlate with levels of employment. Which seems like an obvious outcome!

 

[Valentijn]

Gainful employment had a significant positive association with most measures.

That bit is going to mislead a lot of people. Basically it just means that as pain or fatigue or function questionnaire scores increase, so do employment rates. Or that as the symptoms got worse, there was less employment.

Since symptoms gains weren't maintained, it means that there wasn't any increase in employment.

 

[Valentijn]

The PHD (that Esther linked to) says: "When other variables were controlled for, employment had a significant positive impact on levels of fatigue, physical functioning, depression and pain."

This seems like a slippery conclusion to make. I would have said that levels of fatigue, physical function, depression and pain correlate with levels of employment. Which seems like an obvious outcome!

It suggests that the review for the thesis was a lot sloppier than the review for the published article. Basically someone at the journal said "no" to the BS attempt, while the PhD reviewers let it slide - or were happy to see it spun to reinforce the beliefs of the PhD reviewers themselves.

 

[A.B.]

Since no control group is mentioned, I'm going to assume that there was none, which means that one cannot draw any conclusions about the effectiveness of therapy as there is quite literally nothing to compare it to.

Improvements that don't last may simply reflect a placebo effect.

In typical psychobabbler fashion such details are ignored and wishful thinking does the rest.

 

[Simon]

From the PhD:

Chalder Fatigue Scale
Baseline=25.2
Post-Assessment=19.7 [-5.5 vs baseline]
Followup=19.9 [-5.3]
(PACE SMC: Baseline 28.3 > 23.8 at 12 mo follow-up, [-4.5])

SF36 Physical Functioning
Baseline=43.85
Post-Assessment=52.06 [+8.3]
Follow-up=56.0 [+12.2]
(PACE SMC: Baseline 39.2 > 50.8 at 12 mo follow-up [+11.6])

 

[Bob]

@Simon, I'm just going from the abstract but it looks like the follow-up figures must have been amended for the published paper: "...fatigue, physical functioning, and depression significantly improved, although the improvement was reduced for fatigue, physical functioning, and pain at follow-up."

 

[A.B.]

I'm also wondering how they define GET and pacing, because GET and pacing as I know them are incompatible with each other. In the former, worsening of symptoms in response to increased activity levels is seen as false alarm that must be ignored, while in the latter it is a useful and accurate warning signal. One cannot possible practice both of these at the same time.

 

[Snow Leopard]

This seems like a slippery conclusion to make. I would have said that levels of fatigue, physical function, depression and pain correlate with levels of employment. Which seems like an obvious outcome!

The published paper said:

Our findings also showed that employment, whether paid or voluntary, was significantly associated with the outcome measures. Although this could be a potentially circular argument, that those employed may have had better outcomes anyway, findings from research into fibromyalgia, a condition often seen as similar in its chronicity to CFS/ME, have shown that being employed had a significantly positive impact on physical quality of life in these patients.

The slippery part is that we really don't know what effect the intervention had on employment as we don't have the initial figures and the response rate was poor and likely reflects a bias towards those who have higher level of functioning anyway (and hence more likely to be employed).

 

[DaiWelsh]

I attended an outpatient ME/CFS clinic at Derby. No idea if the treatment I received reflects what they are testing here, as it was a few years ago but fwiw:

The treatment consisted of about 6 group sessions of an hour or so each where they *talked* to us about various things like pacing, GET, hypnosis and presumably employed CBT on us in the process. It was all very "there is no medical cure, so you need to manage yourselves". It did not include (much of) the "sickness behaviour" rhetoric of the PACE mob but still very much suggested we could think/work/meditate ourselves better if we just kept our chins up

There has been no follow up at all with me e.g. to find out what if any of the scatter-gun of techniques had helped me or even if I had employed any of them.

If this is the service they are testing here I am not surprised the results were unimpressive, despite their best efforts to find something positive.

Ironically for myself (n=1) after attending I realised I could expect no real help from NHS so devised my own coping mechanisms and subsequently managed to get a remote-working job. I assume had they included me in the survey I would have bumped their stats up a little despite the treatment being extremely unhelpful in truth and I am still a long way from healthy.

 

[Dolphin]

Here are the main results:

 

[Dolphin]

I think the threshold of 12 (likert scoring) is not correct (or at least I don't recall seeing evidence for it anywhere).

Chalder Fatigue Scale[14] This is a measure of physical and mental fatigue that has been validated on patients suffering with CFS/ME. It contains 11 self-rated items with a four-point Likert scale ranging from“less than usual”to“much more than usual.”The scale can be scored on a 0–3 scale, ranging between 0 and 33 and with a cut off of 12 indicating fatigue, where a higher score is indicative of increased fatigue severity. Reliability (Cronbach’s alpha 0.88–0.90) and validity (sensitivity 75.5 and specificity 74.5) [14] have been established.

If anyone does know of evidence, I'd be very interested in having it as the PACE Trial authors used a threshold of 18 for "normal fatigue".

 

[Dolphin]

Though they do also say:

A similar multi-component approach was researched by Goudsmit et al. [23] who aimed to offer“an alternative to [strictly] graded activity-based programmes for individuals operating at their maximum level of functioning and those with no or little evidence of phobic avoidance.”Positive outcomes post-intervention were reported.

Reminder of what the abstract of Houlton et al says:

Patients appeared to benefit from individual and group approaches that combined cognitive behavioural therapy, graded exercise therapy, and pacing.

 

[Dolphin]

The sample size at follow-up was 98 for a response rate of 32.6%. Seventy-four respondents (76%) had individual treatment, three (3%) received group treatment, and 21 (21%) had both group and individual treatment. Thirty-one participants (31%) had used the service more than once.

So response rate wasn't great.

 

[Dolphin]

Employment information
At follow-up assessment (n= 98), 56 participants classed themselves as being in either paid or unpaid employment, or both. Other participant activities included childcare (10), housework (12), school (six), and retirement (nine).

No information on whether working full-time or part-time or the hours worked.
Also, working in unpaid employment is not the same as paid employment.

 

[Dolphin]

A qualitative aspect of the current study involved a thematic analysis of 10 telephone interviews of participants who had used the clinical research service. The results indicated that the CFS/ME service was seen as positive and beneficial, with key themes of offering validation of the condition,flexibility of appointments, and education about condition management. Areas that participants felt had created barriers for them were: negotiating service access; finding it difficult to attend appointments; and the service not offering as holistic an approach as some participants would have liked. Participants highlighted the importance of being offered both group and individual treatment, which were often viewed as complementary to one another.

That's all we really got on that. Perhaps there is more in the PhD.