Is chronic fatigue syndrome heterogeneous? A review of the literature and new study of the lumping v

[JaimeS]

Full title:
Is chronic fatigue syndrome heterogeneous? A review of the literature and new study of the lumping versus splitting debate for functional somatic syndromes

By all our usual friends:
M. Sharpe, T.E. Williams, L. Pangiotopoulou, T. Chalder, P.D. White

From "The Journal for Psychosomatic Research", natch.

Behind a paywall, but it's only 58 kb. You can presume the entire text says, "no. They cannot be split. It's homogenous. We are right. We are always right. All hail the glow cloud."

If anyone has any text, I'll post it to the start of the thread, but I think what's up above could probably stand in for it until then... looks basically like a letter.

-J

 

[Scarecrow]

They cannot be split. It's homogenous.

I'm no expert but I think that's more of a Wesselyan view.

Both Sharpe and White have previously said otherwise. Here's an article from the Beeb, which starts with the usual obligatory reference to death threats and then gets to the point.

 

[Cheshire]

Abstract:

Background: There is evidence for and against functional somatic syndromes being either lumped together or separated apart. The aim of this presentation is to review the evidence regarding the heterogeneity of chronic fatigue syndrome (CFS) and to provide
new data addressing this issue.

Method : First, we reviewed the literature regarding heterogeneity of CFS. Next, we used baseline data from the PACE trial, which included 961 variables from 640 participants with CFS.
Variable reduction, using a combination of clinical knowledge and principal component analyses, produced a final dataset of 26
variables for 541 patients. Latent class analyses were then used to empirically define subgroups, which were then tested for differences in measures of fatigue and disability not used in the previous analysis.

Results : The literature review found 14 relevant papers, which showed consistent evidence for heterogeneity, but significant
variation in the sub-groups identified, depending on method of statistical testing used and variables measured. Analysis of PACE participants ’ data found that a five class model was the most statistically significant and clinically recognisable. The largest, “core ” subgroup, had low scores across all domains and good selfefficacy. A further three subgroups were then defined by mood disorders, features of other functional somatic syndromes, and a polysymptomatic group which combined features of both. The smallest group were characterised by fear avoidance and inactivity.
Measures of fatigue and disability varied significantly across the subgroups.

Conclusion: Chronic fatigue syndrome is clinically heterogeneous, and subgroups defined by comorbid mood disorders and high numbers of physical symptoms have been consistently found.
Progress in understanding the pathophysiology of CFS and the development of more personalised treatment approaches may benefit from splitting them into clinically defined subgroups

 

[JaimeS]

Actually quite thought-provoking. Other studies have shown mood disorders to be more prevalent in UK groups, probably because of misdiagnosis between ME and these disorders, given the misconceptions about the illness. It is intriguing that they say that the largest group scored high on self-efficacy. I'd be interested to see more on this.

At the same time, I've got to wonder if this is a move towards "some patients have a biomedical issue, and for others we were right all along" as the new narrative.

-J

 

[Chrisb]

Truly amazing. In this great leap of the intellect they have discovered what people have been trying to tell them since 1988.

This seems to have been inevitable since the paper some time last summer when even they acknowledged that 30 or 40% (I forget which, I only remember things in the most general of terms) of those undergoing their therapies failed to derive any benefit. Although the press releases spun the result as finding that people with ME/CFS benefitted.

In these days of evidence based medicine, you will just have to imagine the sarcastic emoji, they could not reasonably continue prescribing CBT/GET for all if such a large cohort failed to benefit. This is just their way of keeping the gravy train rolling. I don't suppose they will seek advice from any who might be able to offer guidance.

 

[user9876]

Actually quite thought-provoking. Other studies have shown mood disorders to be more prevalent in UK groups, probably because of misdiagnosis between ME and these disorders, given the misconceptions about the illness. It is intriguing that they say that the largest group scored high on self-efficacy. I'd be interested to see more on this.

At the same time, I've got to wonder if this is a move towards "some patients have a biomedical issue, and for others we were right all along" as the new narrative.

-J

I'm npot sure how seriously we should take their definitions of mood disorder. I seem to remember they were using HADS as a scale which is poor and questions on it don't distinguish between disability and depression. Coyne wrote an article saying the scale should not be used and I think there was a spanish study with FM which said it was only capable of showing psychological distress and not depression or anxiety disorders.

 

[Bob]

Ignore this. Just placing it here for my reference.

Is chronic fatigue syndrome heterogeneous? A review of the literature and new study of the lumping versus splitting debate for functional somatic syndromes.
Williams TE, Pangiotopoulou L, Chalder T, Sharpe M, White PD.
Journal of Psychosomatic Research 2016;85:88-89
http://www.jpsychores.com/article/S0022-3999(16)30308-7/abstract

 

[A.B.]

I'm npot sure how seriously we should take their definitions of mood disorder. I seem to remember they were using HADS as a scale which is poor and questions on it don't distinguish between disability and depression. Coyne wrote an article saying the scale should not be used and I think there was a spanish study with FM which said it was only capable of showing psychological distress and not depression or anxiety disorders.

Link to Coyne's article
The Hospital Anxiety and Depression Scale (HADS) is dead, but like Elvis, there will still be citings
http://www.rug.nl/research/portal/files/6780761/Coyne_2012_J_Psychosom_Res_2.pdf!null

No further research needed: Abandoning the Hospital and Anxiety Depression Scale (HADS)
http://www.rug.nl/research/portal/files/6774405/Coyne_2012_J_Psychosom_Res.pdf!null

 

[Vasha]

This is also interesting:

"The smallest group were characterised by fear avoidance and inactivity."

I thought that was the general theory for all of us? Maybe they are moving to a more nuanced view.

The entire article doesn't seem to be available yet--the DOI is not yet active.

-Vasha

 

[Bob]

I think this may be a conference abstract only, for the 4th annual scientific conference of the European Association for Psychosomatic Medicine (EAPM) hosted in Luleå, Sweden, 16-18 June 2016. The conference is titled: "Transforming health through evidence and empathy." ( ) http://eapm2016.com/

The abstracts are listed in the journal, here:
http://www.jpsychores.com/issue/S0022-3999(16)X0005-0?page=0

Forum threads about the conference:
http://forums.phoenixrising.me/inde...iation-for-psychosomatic-medicine-eapm.45001/
http://forums.phoenixrising.me/index.php?threads/luleå-sweden-hosts-psychosomatic-conference-eapm-2016-june-16-18.44750/

 

[Snowdrop]

Looks like the musings of people conjuring a metaphorical lifeboat. I have been a little low of late--and even though I could be completely misunderstanding the meaning this communicates--this cheers me. Do they think the boat is sinking?

If only we could get FITNET to die prematurely before it can do harm.

 

[Bob]

Yes, this does seem to be a slight improvement on their usual stuff. It almost seems sensible and reasonable! Let's hope it's a move in a new direction. Their previous model couldn't last forever, with patients becoming ever more empowered to assert themselves. Perhaps the authors feel that it's time to evolve, or become irrelevant dinosaurs. (I can hope!)

 

[worldbackwards]

Perhaps the authors feel that it's time to evolve, or become irrelevant dinosaurs. (I can hope!)

I do hope they choose to become irrelevant dinosaurs. I've been waiting for that for ages.

 

[Invisible Woman]

The conference is titled: "Transforming health through evidence and empathy

 

[Snowdrop]

Yes, another word they must have repurposed for a new improved meaning relating to ME research.
It's usual meaning: http://dictionary.cambridge.org/dictionary/english/empathy

I think they need a better imagination.

 

[JaimeS]

The Hospital Anxiety and Depression Scale (HADS) is dead, but like Elvis, there will still be citings

OMG THE PUN. Coyne, you silver-tongued devil, you.

 

[alex3619]

In these days of evidence based medicine, you will just have to imagine the sarcastic emoji, they could not reasonably continue prescribing CBT/GET for all if such a large cohort failed to benefit.

A typical psych response is that most people fail to benefit with most treatments so they have to switch treatments till they find one that works. Since they do not have an alternative psych treatment that works at all, after CBT/GET fails (a typical result) then they abandon the patients.

 

[alex3619]

I do hope they choose to become irrelevant dinosaurs. I've been waiting for that for ages.

They cannot choose. They already are. Its just that they don't believe the evidence that their species is on the way out.

 

[JaimeS]

I'm npot sure how seriously we should take their definitions of mood disorder. I seem to remember they were using HADS as a scale which is poor and questions on it don't distinguish between disability and depression. Coyne wrote an article saying the scale should not be used and I think there was a spanish study with FM which said it was only capable of showing psychological distress and not depression or anxiety disorders.

It wasn't UK folks saying so, though. The study I saw compared populations in the UK, US, and (I believe) Norway, and showed that, using the same, objective measures (however crappy they were)...

...I should hope they used the same objective measures. I may have to look back. But I'm pretty sure it wasn't the UK docs who diagnosed them, but the study team who diagnosed everybody.

-J