Treatment of chronic fatigue syndrome: findings, principles and strategies

[Dolphin]

Fred Springfield recently posted this to Co-Cure pointing out:

[Although this article is a year old, it has just now made it to PubMed.]

Treatment of chronic fatigue syndrome: findings, principles and strategies.

Journal: Psychiatry Investig. 2008 Dec;5(4):209-12. Epub 2008 Dec 31.

Authors: Luyten P, Van Houdenhove B, Pae CU, Kempke S, Van Wambeke P.

Affiliation: Department of Psychology, University of Leuven, Leuven,
Belgium.

NLM Citation: PMID: 20046339


Chronic fatigue syndrome (CFS) is a debilitating condition
characterized by serious medically unexplained mental and physical
fatigue. The high prevalence and both direct and indirect health
costs of CFS patients represent a huge problem for contemporary
health care. Moreover, the prognosis of CFS, even when treated, is often
poor.

In this paper, we first critically review current evidence based
treatments of CFS. Second, we discuss the growing insights into the
etiopathogenesis of CFS, and the need to translate and integrate
these insights into future treatments. In particular, we formulate a
pragmatic and empirically testable treatment approach, tailored to
the individual needs of patients, which aims at restoring the mental
and physical equilibrium of CFS patients by trying to bring about
sustained life style changes.


Note: The full text of this article is available for free at
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2796012/

 

[Dolphin]

From an academic point of view, I thought there were some useful quotes in this. Things some in the CBT school
in the UK and probably the Netherlands wouldn't say.

I've left them in context a bit so it makes sense.

Of course, they are focussed on non-pharmacological interventions which I don't
think are sufficient in this condition. And the comments probably wouldn't be enough to change the situation in the Belgium. But I think it is interesting to see them.

Tom

-------
However, many questions remain about the therapeutic
aims, strategies and outcomes, as well as the purported
mechanisms of change in these treatments. First, success
rates of both CBT and GET leave considerable room for
improvement, particularly as studies on the long-term effects
of these treatments have yielded mixed conclusions.10Together with the chronic and relapsing nature of CFS,
these findings suggest that future studies should investigate
the efficacy of maintenance treatment, which may
help patients to change maladaptive core assumptions and
achieve lasting life style changes.11 Second, concerns have
been raised about the generalisability of results based on
randomized, controlled clinical trials (RCTs) to routine
clinical practice. Randomized trials typically include patients
that are more mobile and show less psychiatric comorbidity.
10 Moreover, patients in RCTs may be more
motivated, while therapists may have higher levels of
training, than in routine practice. Congruent with these
assumptions, the only study that investigated the effect
of CBT for CFS within versus outside the confines of an
RCT found that whereas 63% of the patients in the RCT
condition no longer met the fatigue caseness criterion,
only 36% of patients did so in routine clinical care.12 Third,
there is little evidence supporting the putative mechanisms
of change in CBT and GET.10,13 This has led some researchers
to speculate that, as for many psychological problems,
patient,14 therapist,5,15 and common factors such as a emotional
processing or the quality of the therapeutic alliance16
may be more important in predicting outcome than specific
techniques associated with particular `brand names' of
therapy. Although further research is needed, these assumptions
are congruent with findings that other treatments
such as mindfulness-based treatment and counseling have
been shown to lead to comparable effect sizes as CBT
and GET in the treatment of CFS.17

========
Moreover, whatever the origin
of this loss of resilience, patients should be reassured that
they can substantially contribute to the recovery of their
stress system by finding a new equilibrium, which involves
acknowledging and understanding their limitations and
includes learning to better `listen to their body'.

=======
For instance, whereas for most CFS patients activity pacing
might be helpful to prevent so-called outbursts of activity
followed by post-exertional malaise, in some patients
the focus must be on rebuilding physical condition, often
by overcoming `fear of movement'.20 In other patients,
dysfunctional beliefs, such as catastrophizing, must be
addressed. More directive treatments such as CBT14 or
mindfulness and acceptance based strategies38 might work
best for some patients. Other patients, however, might need
less directive treatments, such as counselling,17,39 psychodynamic
treatment,40,41 or systemic interventions42 to address
psychiatric comorbidity, personality and/or relational
problems, and to adjust life goals and work through
the "loss of a life style". Moreover, such tailored treatments
best occur based on a coherent treatment plan within
the context of a multidisciplinary approach39 that also
addresses medical-social issues, as these may considerably
influence the treatment process.14

==========
(repeats comments from earlier, to an extent)

Conclusions

Notwithstanding considerable advances in the treatment
of CFS, current evidence based treatments clearly
provide no panacea. In particular, more research is needed
concerning the long-term effects of these treatments, their
generalisability to routine clinical care, and the identification
of their mechanisms of change.

---
"Further research, however, is needed to test these assumptions, and
particularly to find out "what works for whom".

====================

(The last point is subgrouping - it is mentioned above but explicitly makes the point. Those in UK and the Netherlands generally say CBT is useful for all patients)

 

[Dolphin]

I think this study: http://forums.aboutmecfs.org/showth...tients-with-CFS-The-role-of-physical-activity is more interesting even though I didn't give the thread a catchy title. They found that people weren't doing more activity after CBT in three studies. The two older of these studies are often used to make the case for CBT improving fatigue and increasing physical functioning.

 

[leelaplay]

I think this study: http://forums.aboutmecfs.org/showth...tients-with-CFS-The-role-of-physical-activity is more interesting even though I didn't give the thread a catchy title. They found that people weren't doing more activity after CBT in three studies. The two older of these studies are often used to make the case for CBT improving fatigue and increasing physical functioning.

How interesting Tom - I hope charityfundraiser sees this - I'm fairly certain that some of the authors of this paper are the names that he quoted as being the Wessely/Whites of Belgium - maybe I'll PM him to confirm. If that's the case, I find this article presents some hope if they are recognizing to some extent that CBT/GET are not working and are recognizing sub-types. Maybe someday they'll GET (pun intended) that ME/CFS is an organic disease, and, as with all severe disease, counselling can help some people manage living with the disease better.

 

[Dolphin]

How interesting Tom

Thanks

- I hope charityfundraiser sees this - I'm fairly certain that some of the authors of this paper are the names that he quoted as being the Wessely/Whites of Belgium - maybe I'll PM him to confirm.

Good idea.
The authors in the paper in this thread could perhaps be said to be like that, although they have softened a bit in recent years - I don't know them as well as the UK and Dutch researchers.

The authors of the study that found no improvement in activity levels as measured by actometers are from the Netherlands. It should not be interpreted they have given up on CBT because of the results. There is no real softening of their language as such in the paper!

And I don't find it difficult to envisage somebody like Peter White softening.

If that's the case, I find this article presents some hope if they are recognizing to some extent that CBT/GET are not working and are recognizing sub-types. Maybe someday they'll GET (pun intended) that ME/CFS is an organic disease, and, as with all severe disease, counselling can help some people manage living with the disease better.

Yes, I agree counselling can help some people with diseases cope with their illness which may directly or indirectly mean they manage their illness better.

 

[leelaplay]

FYI - I got charityfundraiser mixed up with s5044726. Have PMed him. Wonder if he has an insider's perspective.

 

[Mithriel]

While I would like all the psychologising to be taken out of the treatment of ME and CFS, I don't have so much of a problem with
this softer approach.

I believe that the clinics are staffed by people who just want to do their job and treat patients. They are following what they are told are the "facts" about CFS and have no particular agenda.

Actually asking people what their symptoms are and what they need, might lead to them learning what CFS truly is, at best and at worst, it won't do the damage that GET for all is causing.

The use of adaptive pacing and the quiet dropping of aggressive GET that is happening shows that it just wasn't working.

Mithriel