Cochrane review and the PACE trial

[Kalliope]

It says 2017 at the link.

Yes it does, so why is it presented by prof. Gundersen as brand new? I think Larun et al are working on a new publication, so am expecting one soon, but this can't be it, can it?

 

[Esther12]

Yes it does, so why is it presented by prof. Gundersen as brand new? I think Larun et al are working on a new publication, so am expecting one soon, but this can't be it, can it?

Gundersen doesn't seem like someone overly concerned about getting the details right.

 

[Esther12]

Also worth drawing attention to the problems identified with this review, and the authors' failure to address them: https://sites.google.com/site/mecfs...exercise-therapy-for-chronic-fatigue-syndrome

 

[Jonathan Edwards]

Prof. Gundersen tweeted about a fresh Cochrane review on CFS and CBT/GET with link to this article, but I can't find the publication date.
Is this brand new?

This looks like the old review. Maybe Gundersen is unaware that a more recent attempt at a review including the PACE authors was written but as far as I know has not yet appeared. I advised Cochrane that it had no business to appear and that this previous review was also unfounded. It is conceivable that this is a new version just from Larun and Brurberg.

 

[MSEsperanza]

Just to broaden the perspective: Not only the Cochrane "Common Mental Disorders Group" but also the Cochrane "Multiple Sclerosis and Rare Diseases of the CNS Group" appears to have questionable standards of assessing research quality:

Heine M, van de Port I, Rietberg MB, van Wegen EE, Kwakkel G. Exercise therapy for fatigue in multiple sclerosis. Cochrane Database Syst Rev (2015) 9:1.10.1002/14651858.CD009956.pub2

http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD009956.pub2/full

Quality of the evidence

[...] Due to the nature of the intervention (exercise therapy) and subjectivity of the outcome (self reported fatigue), blinding of therapists, participants, and outcome assessment was structurally scored 0 for all included trials. Hence, this limits the maximal score for methodological quality to 7 out of 10. [...]

Yet I cannot comprehend how that can be interpreted as "moderate quality" which is the second highest rating by Cochrane -- meaning:

"Further research is likely to have an important impact on our confidence in the estimate of effect and may change the estimate", yet seems to be sufficient to recommend the reviewed treatment.

I find the shortcomings described by the authors contradictory to their overall rating of the evidence and their conclusion:

Potential biases in the review process

[...] The major limitation in the present review is the lack of well reported, sufficiently powered trials that specifically address fatigue. The asymmetrical shape of the funnel plot (Figure 3) is also suggestive of a small-study effect, which may indicate that small negative trials remain unpublished. However, most trials included in the present review were small and underpowered to assess MS-related fatigue (i.e. reflecting the bottom half of the funnel plot). Hence, it is not until larger, sufficiently powered trials are conducted that we can determine the effect of unpublished small trials on the quality of evidence of exercise therapy for fatigue in people with MS. To illustrate, if we consider the SMD of 0.53 for the effect of exercise therapy on fatigue in people with MS, one would need at least 57 participants per trial arm to obtain a statistical power of 80%. From the studies included in the present review, only the study by Carter and colleagues reached such a statistical power (Carter 2014).[...]

vs. Conclusion

The current review shows that exercise therapy can be safely prescribed and is moderately effective in the treatment of fatigue in people with MS without increasing the risk of relapse [...]

[Edited: title of the Cochrane review]
[Edited 2: sorted my comments from the quotations. It's about time to rest again. ]

 

[Jonathan Edwards]

Just to broaden the perspective: Not only the Cochrane "Common Mental Disorders Group" but also the Cochrane "Multiple Sclerosis and Rare Diseases of the CNS Group" appears to have questionable standards of assessing research quality:

It certainly looks as if the neurorehabilitationists have joined forces with the liaison psychiatrists on this. In the UK pals of Sharpe like Stone and MacLeod appear to take this peculiar approach to evidence quality.

 

[large donner]

Only last week on the BBC news they were claiming exercise therapy for people with cancer even when having chemo was safe and effective. They are already claiming its a treatment for Parkinsons also.

Same old non descriptive claims, no defining of the difference between exertion and planned exercise and how they measured the effect on activities of daily living.

I think we can close down all labs, medical research and scientific development and just put up posters on every street corner saying, "an apple a day keeps the doctor away".

 

[Jonathan Edwards]

I think we can close down all labs, medical research and scientific development and just put up posters on every street corner saying, "an apple a day keeps the doctor away".

You may not remember the Speak Your Weight machines on the underground. I thought that maybe the answer to osteoporosis was to have machines on platforms where old ladies can put in twenty pence and it jiggles them about for a minute. They might be quite fun.

 

[MSEsperanza]

It certainly looks as if the neurorehabilitationists have joined forces with the liaison psychiatrists on this. In the UK pals of Sharpe like Stone and MacLeod appear to take this peculiar approach to evidence quality.

Do rehabilitationists in general use their imagination much to think of other forms of rehabilitation than exercise?
Yet, are the authors of this review actually rehabilitationists?

 

[Jonathan Edwards]

Do rehabilitationists in general use their imagination much to think of other forms of rehabilitation than exercise?
Yet, are the authors of this review actually rehabilitationists?

Clicking on each name reveals that they all work in Rehabilitation units.
Essentially we have the equivalent of psychotherapists: physiotherapists. It looks as if Cochrane is happy for the relevant therapists, and their overlords, to review therapist-delivered treatments. I think this is probably something which should come to a stop. Therapists are different from doctors in that they ARE the treatment. So their ability to be disinterested is much less. Doctors are bad enough. Doctors whose work specifically consists of herding around therapists to do the work are pretty much like the therapists.

Having communicated with Iain Chalmers about the GET review situation I have come to realise that there is a political agenda behind Cochrane that is essentially anti-drug, and as part of this pro-therapy.

 

[MSEsperanza]

Clicking on each name reveals that they all work in Rehabilitation units.
Essentially we have the equivalent of psychotherapists: physiotherapists. It looks as if Cochrane is happy for the relevant therapists, and their overlords, to review therapist-delivered treatments. I think this is probably something which should come to a stop. Therapists are different from doctors in that they ARE the treatment. So their ability to be disinterested is much less. Doctors are bad enough. Doctors whose work specifically consists of herding around therapists to do the work are pretty much like the therapists.

Having communicated with Iain Chalmers about the GET review situation I have come to realise that there is a political agenda behind Cochrane that is essentially anti-drug, and as part of this pro-therapy.

Thank you, @Jonathan Edwards. Not very encouraging, but good to know.

Is this Iain Chalmers' stance in particular, and how influential is he for Cochrane in general at present?
(He appears to have a very one-sided political agenda in other social areas, too, so I thought that could affect his overall trustworthiness).

In any case, I think we need strong allies outside Cochrane and outside the ME field.
I started looking for such allies in the MS research field (see https://www.s4me.info/threads/objec...tiguability-lurija-institute.4241/#post-91599 )

But I lack medical expertise to assess the quality of this research.

Perhaps neuropsychiatrists / neuropsychologists might be supportive of criticizing Cochrane? [eta: ] I think there is also a lack of evidence for treatments in this area ("brain jogging" and the like, yet also drugs).

 

[Arnie Pye]

Having communicated with Iain Chalmers about the GET review situation I have come to realise that there is a political agenda behind Cochrane that is essentially anti-drug, and as part of this pro-therapy.

What does Cochrane hope to achieve with an anti-drug stance? And does this apply only to ME/CFS or everything?

 

[Jonathan Edwards]

What does Cochrane hope to achieve with an anti-drug stance? And does this apply only to ME/CFS or everything?

I don't think it is a matter of hoping to achieve. I just sense that many of these organisations, whether Cochrane, Sense About Science or whatever tend to be set up by people with some sort of political agenda. A very popular political agenda is anti-drug, anti-'biomedical model' etc. Chalmers seems to have left Cochrane per se but I think there may be people still there who have a similar emotional bent under the surface. One may be Paul Glasziou, who was a co-author on the recent Larun, White, Sharpe, Uncle Tom Cobblers and all effort.

 

[large donner]

I don't think it is a matter of hoping to achieve. I just sense that many of these organisations, whether Cochrane, Sense About Science or whatever tend to be set up by people with some sort of political agenda. A very popular political agenda is anti-drug, anti-'biomedical model' etc. Chalmers seems to have left Cochrane per se but I think there may be people still there who have a similar emotional bent under the surface. One may be Paul Glasziou, who was a co-author on the recent Larun, White, Sharpe, Uncle Tom Cobblers and all effort.

Dont forget that they are trying to move the model on to "self help" online or DVD "courses" instead of more costly "therapies". On top of that they have already shown their hand by promoting private treatments like the LP and pushing for as many "MUS add ons" as possible.

There are vultures flying around desperately trying to destroy the NHS and turn everything private. The model they will employ if that happens is maximum insurance premiums, with minimum treatments and maximum disqualifications.

We keep hearing "we cant afford the NHS anymore", which is a nonsense statement as the alternative per capita cots will be much higher in a private system once you add a profit motive on top.

Obvious then that they have to get everyone used to next to no treatment first, lower the expectations with a fake political narrative then slice up a bloody big cake of high premiums, minimal payouts and zero hour contracts for as many healthcare workers as possible as well as excluding them from sick and holiday pay as a consequence.

 

[Arnie Pye]

@large donner Don't forget banning more and more medications and treatments. E.g. need your tonsils out? Forget it. For women with massive breasts that give them permanent back and neck ache? They have to pay for breast reduction. The NHS can say these procedures weren't banned, but in effect they will be. It's already happened to people who need T3 for thyroid problems. More and more people who are already on it are having it removed from prescription, and new patients are being turned down for it. Officially, it hasn't been banned!

There are vultures flying around desperately trying to destroy the NHS and turn everything private.

And they are succeeding. The pace of change is accelerating as far as I can tell.

We keep hearing "we cant afford the NHS anymore"

I remember when I first worked a few decades ago that the basic rate of income tax was 33%. Now it is 20%. I don't know enough about taxation to know if it is a fair comparison. But surely tax could go up by 1% without there being riots in the streets?

 

[Sean]

Sadly, I have to agree.

This whole thing stinks of serving some very narrow political and economic interests rather than medical ones. That is why PACE could not be allowed to fail. Its importance to a certain agenda goes way beyond just the PACE crowd, or the relatively small clique of BPSers.

Wessely's grubby political paw prints, in particular, are all over this shite, at every level of governance.

It is happening is Australia too, big time. Our current shabby excuse for a government are just ripping our previously very effective and efficient health and welfare systems to shreds, and still managing to double the national debt at the same time. Where the eff is the money going?

 

[MSEsperanza]

Thank you, @Jonathan Edwards.
In any case, I think we need strong allies outside Cochrane and outside the ME field.
I started looking for such allies in the MS research field (see https://www.s4me.info/threads/objec...tiguability-lurija-institute.4241/#post-91599 )

But I lack medical expertise to assess the quality of this research.

Perhaps neuropsychiatrists / neuropsychologists might be supportive of criticizing Cochrane? [eta: ] I think there is also a lack of evidence for treatments in this area ("brain jogging" and the like, yet also drugs).

@Jonathan Edwards , apologies, I just realized that in this regard we already have at least one strong, very important and higly appreciated medical professor ally who came from outside the ME field. So we just need some clones of you...Any ideas how to produce them?

 

[Inara]

Where the eff is the money going?

To rich (and maybe mostly "important") people?

 

[MSEsperanza]

I found the following juxtapositions of excerpts of the (I think) latest Cochrane review (http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003200.pub7/full) in my draft folder and just leave this here in case it might be of interest for anyone.

(I thought it showed some contradictory rhetoric regarding the level of evidence for the reviewers' conclusions.)

The authors conclude in their abstract of the review:

Authors' conclusions (Abstract)
Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes. A positive effect with respect to sleep, physical function and self-perceived general health has been observed, but no conclusions for the outcomes of pain, quality of life, anxiety, depression, drop-out rate and health service resources were possible. The effectiveness of exercise therapy seems greater than that of pacing but similar to that of CBT. Randomised trials with low risk of bias are needed to investigate the type, duration and intensity of the most beneficial exercise intervention.

(bolding and underlining added)

The conclusion at the end of the review also is rather vague:

Implications for practice
Encouraging evidence suggests that exercise therapy can contribute to alleviation of some symptoms of CFS, especially fatigue. Exercise therapy seems to perform better than no intervention or pacing and seems to lead to results similar to those seen with cognitive behavioural therapy. Reported results were obtained from patients who were able to participate (not from those too disabled to attend clinics) [...]

We think the evidence suggests that exercise therapy might be an effective and safe intervention for patients able to attend clinics as outpatients.

(bolding and underlining added)

source: http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003200.pub7/full

Compare this to the proposed questions they claim to be able to answer...

What questions does this review aim to answer?

• Is exercise therapy more effective than ‘passive’ treatments (e.g. waiting list, treatment as usual, relaxation, flexibility)?

• Is exercise therapy more effective than other ‘active’ therapies (e.g. cognitive-behavioural therapy (CBT), pacing, medication)?

• Is exercise therapy more effective when combined with another treatment than when given alone?

• Is exercise therapy safer than other treatments?

http://www.cochrane.org/CD003200/DEPRESSN_exercise-treatment-patients-chronic-fatigue-syndrome

...and how they answer these questions:

What does evidence from the review tell us?

Moderate-quality evidence showed exercise therapy was more effective at reducing fatigue compared to ‘passive’ treatment or no treatment. Exercise therapy had a positive effect on people’s daily physical functioning, sleep and self-ratings of overall health.

One study suggests that exercise therapy was more effective than pacing strategies for reducing fatigue. However exercise therapy was no more effective than CBT.

Exercise therapy did not worsen symptoms for people with CFS. Serious side effects were rare in all groups, but limited information makes it difficult to draw firm conclusions about the safety of exercise therapy.

Evidence was not sufficient to show effects of exercise therapy on pain, use of other healthcare services, or to allow assessment of rates of drop-out from exercise therapy programmes.

https://www.cochrane.org/CD003200/DEPRESSN_exercise-treatment-patients-chronic-fatigue-syndrome

 

[Sean]

• Is exercise therapy more effective than other ‘active’ therapies (e.g. cognitive-behavioural therapy (CBT), pacing, medication)?

Since when has pacing been a "therapy", let alone an 'active' one?