Chronic fatigue syndrome (CFS/ME) symptom-based phenotypes & 1-year treatment outcomes in two clinical cohorts of adult patients.., 2017, Collin et al

http://www.jpsychores.com/article/S0022-3999(17)30841-3/pdf

posted by @Sly Saint in another thread, so it's getting it's own thread here.

 

How does this stuff get published?

 

I'm not that interested in the specifics of their subgroupings, so while I pulled out some bits that interested me, it's going to be missing the details of that stuff. This was just done on a glance while eating breakfast, so I might have made errors.

It's all done on self-report of symptoms, so of fairly limited interest. I'm sure I did find self-reported CGI follow-up results for an NHS homeopathy clinic years back... maybe it would be funny to compare them?

They only had follow-up data for about half of participants:

"12-month follow-up
data were available for 416 (45.3%) UK and 912 (65.5%) NL patients. UK patients lost to
follow-up were slightly younger than those who had follow-up data (mean 39.6 vs 42.1 years,
p=0.005) but there were no differences in sex or baseline fatigue and physical function. Dutch
patients lost to follow-up were slightly older than those who had follow-up data (mean 38.2
vs 36.7 years, p=0.02), were more likely to be male (28.8% vs 23.9%) and had worse baseline
physical function (mean 54.0 vs 58.4, p<0.001) but there was no difference in baseline
fatigue."​

Their results for all those they had follow-up data on:

"Overall changes in health were broadly similar in the two cohorts: 27.6% of UK
patients reported their health to be very much or much better, 63.5% reported little or no
change, and 8.9% said that their health was worse, compared with 39.2%, 56.1%, and 4.7%
of Dutch patients classified as much better, unchanged or worse, respectively."​

I could not see equivalent data for the different sub-groups they identified.

I'd also prefer to have them broken down more than that, to different CGI scores (1-5), but couldn't see that in their tables. Given the problems with self-rated CGI, dropouts, etc, the data wasn't going to be very useful anyway, but it would be better to make it available.

Edit: This is under table 1, and it was confusing that they dropped reference to 'very much better' in places:

"In UK patients, Clinical Global Impression scale, where ‘Much better’ = “Very much better” or “Much better”, ‘Worse’ = “Very much worse” or “Much worse” or ’Unchanged’ = “A little better”, “No change” or “A little worse”; in Dutch patients, change in CIS20-R fatigue score, where ‘Much better’ = score <35 and change > 7, ‘Worse’ = change < 0, ‘Unchanged’ = all other responses"​

They also say:

"For UK patients, we relied on patients’ self-reported
impression of their overall improvement in health, and for Dutch patients we calculated a
reliable change index."​

Results:

"Adjusted multinomial odds ratios (MOR) showed that, compared with oligosymptomatic
patients, UK patients who were polysymptomatic were 58% less likely to report their health
as being ‘much better’ (MOR=0.42 (95% CI 0.20, 0.89)) and patients with predominantly
pain-only symptoms were 65% less likely (MOR=0.35 (0.15, 0.82)) to report substantial
improvement. Similar effects were seen in polysymptomatic and pain-only Dutch patients,
who were respectively 51% (MOR=0.49 (0.31, 0.80)) and 42% (MOR=0.58 (0.39, 0.88)) less
likely to be classified as being much better. There were no associations between phenotypes
and substantially worse health, although estimates were imprecise because of the relatively
small numbers of patients whose health had deteriorated."​

Some of their description of limitations:

"The main limitations of our study are that improvement in
health one year after treatment was measured differently in UK and Dutch patients, and the
UK cohort had high losses to follow up. For UK patients, we relied on patients’ self-reported
impression of their overall improvement in health, and for Dutch patients we calculated a
reliable change index."​

They say this on their sub-grouping (which always sounded a bit of a botch to me):

"Our original study in UK patients found a 6
class solution based on nine symptoms (the five in the present study, plus dizziness, nausea,
and palpitations) [8]. The 3-class solution in the present study arose because we wanted to
compare associations of phenotypes with treatment outcomes between the UK and Dutch
cohorts. The small number of symptoms common to both cohorts, and the smaller size of
these cohorts relative to the original UK cohort, precluded replication of the 6-class solution.
The simpler 3-class solution shares key features with the 6-class solution, namely the poorer
baseline health status and more likely occurrence of comorbidities among polysymptomatic
patients."​

No citing of Wilshire here!:

"Our outcomes were defined to differentiate patients who had improved, rather than
attempting to define ‘recovery’, which is a complex (and controversial) topic in CFS/ME [22
24]"

[22] J.L. Adamowicz, I. Caikauskaite, F. Friedberg, Defining recovery in chronic fatigue syndrome: a critical review, Qual. Life Res. 23(9) (2014) 2407-16.
[23] B. Brown, K. Huszar, R. Chapman, 'Betwixt and between'; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), Sociol. Health Illn. 39(5) (2017) 696-710.
[24] P.D. White, T. Chalder, M. Sharpe, Comment on: 'Reports of recovery in chronic fatigue syndrome may present less than meets the eye', Evid Based Ment Health 19(1) (2016) 32​

There are some complexities around the definition of recovery in CFS/ME, but you'd have to be a right thicko to fall for White's BS.

Discussion section takes a surprising term, where they seem to promote arguments in favour of lumping together an ever wider group of patients for MUS services.

"Our findings show that patients with
different phenotypes have different prognoses. From a CFS/ME specialist service
perspective, this might suggest the importance of individualised treatment, for example, for
patients with pain symptoms, who have less favourable treatment outcomes [28-30].
However, from a broader healthcare perspective, it could be argued that a more
comprehensive framework of clinical management of patients with symptom-based
diagnoses/functional somatic symptoms is needed [31, 32]. From this perspective, the setting
of our study within the boundaries of specialist CFS/ME services (well established in the UK
and the Netherlands, much less so in most other countries) could be perceived as a limitation.
Whether multiple symptoms and functional somatic symptoms delineate subtypes of CFS/ME
[33-35], whether CFS/ME is a subtype of an umbrella syndrome [36], or whether distinct
syndromes such as CFS/ME and fibromyalgia simply occur comorbidly [37] remains an open
question. The answer has major implications for clinical research and practice, including the
design of clinical trials [38] and the role of illness severity rather than symptomatology in
predicting treatment outcomes [39]."​

Very weird, considering what the rest of their paper was saying, but at this point, I think that creating amorphous MUS services is their best approach for promoting their own self-interests and undermining any sort of patient advocacy.

They don't seem to give data on the % giving different self-rated outcomes for the three sub-groups they had identified, and that seems odd to me. Maybe it could be calculated from table 2, the formatting of which is currently a mess.

Table 2 also has % of patients falling into the different sub-groups in the Dutch and UK groups, and they're quite different. I don't recall them commenting on this:

UK adult CFS/ME patients
Class 1 Oligosymptom
(15.5%)
Class 2 Pain only
(35.5%)
Class 3 Polysymptom
(49.0%)

Dutch adult CFS/ME patients
Class 1 Oligosymptom
(22.6%)
Class 2 Pain only
(51.9%)
Class 3 Polysymptom
(25.4%)​

 

That journal does seem fairly consistently shit. (at least on ME/CFS/MUS/etc)

 

Maybe one day when we're more settled here we can come up with a system that scores these things. For now I'll volunteer the pink JPM for a two thumbs down score.

I expect with the situation we find ourselves in (although rapidly changing thankfully) that there might need to be a score of 'makes my eyes bleed'.

 

Surely this research makes the UK services sound crap? After 12 months 72.4% of patients are the same or worse. They don't even have a clue what happened to over half of them, as, as we already know you get dismissed once you've done your cbt/get.

So to me this shows that for 72.4% of patients it's pointless doing get/cbt and that nobody cares what happens after you've done your cbt/get course. Have I got that right?

 

And there's no control group, people tend to be positive about worthless things like homeopathy and, as you say, over half the UK sample went missing anyway.

The UK's CFS services have soaked up huge amounts of money over the years, and seem to have done almost nothing of value for patients. Their primary impact seem to have been to have promoted a misleading impression that their are already effective treatments available (leading to recovery of 30-40% of patients if Crawley is to be believed!) if only patients could be convinced to engage with them.

 

Given that this seems to be the only possible rationale for their existence, it seems likely that this is the case, that the UK's CFS services are not in existence to treat patients, at all, but to provide something to point at to say, look, we've got effective treatments, we've done the bogus £5 million study, after suitable adjustments, to adjust for the fact they didn't work, it showed they work.

 

The only people they actually help are probably those who are misdiagnosed and never had ME.

 

This is clearly untrue. They also help lots of other people, who otherwise may not have a paypacket.

 

Lol, I obviously wasn't including those profiting from our misery.

 

So is this the type of paper that we'll see if crawley gets anywhere with MEGA!!!! subgroups/phenotypes.....

 

The woman can't even diagnose ME, let alone research phenotypes. Our knowledge of ME was further advanced before the psyco crew muddled it in with every other sort of chronic fatigue.

 

''it could be argued that a more
comprehensive framework of clinical management of patients with symptom-based
diagnoses/functional somatic symptoms is needed''

No shit. Patients have been trying to tell you for years that your one size fits all get/cbt does not work for most and harms many. Try listening to your patients instead of wasting millions of research $$

 

Very doubtfull. If Pace showed us anything it's that CBT/GET doesn't help any form of fatigue.

 

merged thread
Someone kindly messaged our Facebook page to highlight this to us

Open access at http://www.jpsychores.com/article/S0022-3999(17)30841-3/fulltext

They would appear to have figured out that the more severely ill you are, the harder you are to treat, or to put it another way, if you actually have ME/CFS then their treatments are less effective.

 

They should never have highjacked ME for their chronic fatique idea fix.

 

https://www.youtube.com/watch?v=aYoV0Uh9JPQ