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Debate
Updated today 11:59 Debate
Cognitive impairment in ME debate
The research shows that the majority of ME/CFS patients do not benefit
from cognitive therapy. Proponents must remove the blinders and
participate in an honest discussion that is not about to defend the
territory.
Jørgen Jelstad, journalists, relatives and author of "The Secluded -
and how ME was today's most controversial illness"
TODAY'S MEDICINE has a couple articles written about threats to ME/CFS
researchers. Threats of course totally unacceptable, and it is good
that the police. So I hope people understand that this is a matter of
a few extreme individuals, and that they do not stamp a whole group of
patients on the basis of it.
At the same time general practitioner Signe Nome Thorvaldsen with
statements of Today's Medicine which should not be left uncommented as
they contain factual errors. Misinformation about cognitive therapy
and ME/CFS uttered sadly from various quarters in the Norwegian
community.
WHAT DOCUMENTATION? Thorvaldsen said to Dagens Medicine: "You now know
that cognitive therapy helps as well as the biological treatment such
as rituximab (...) Both strategies have the same effect on the
disorder, they reduce fatigue as well and they contribute similarly to
that patients are socially active again and get back to work. "
But what kind of documentation is based Thorvaldsen in? There is not
enough research on drug therapy, including rituximab, to say anything
certain about the effects yet. This is an extremely under priority
area, and you need larger studies. To compare this completely hopeless
at this time.
NEED UPDATING. For some professionals it is also time to settle
properly into research on cognitive therapy and ME/CFS before they
speak out. Cochrane systematic review article, the best one to get on
the field, shows that 40 percent of patients have some effect on one
symptom, fatigue symptom, through cognitive therapy, but 26 percent of
patients who receive only monitoring by a physician, has similar
improvement (1). Long term effects are uncertain.
A small minority has thus an additional effect of cognitive therapy,
one must compare with control groups to say something about the real
effects of a treatment. The majority of patients rely on that finding
new and far better therapies.
There is no basis in research to say that cognitive therapy has no
effect on objective measures such as labor participation or actual
physical capacity. A 2010 study shows that patients' self-reported
improvement does not lead to increased physical activity (2).
MAPPING. The much talked PACE study of cognitive therapy (3) showed
that one must treat the seven ME/CFS patients through a half years for
one of them to be particularly significant effect of this particular
treatment (4), known as Number Needed to Treat (NNT). Six of the seven
will not have much effect of cognitive therapy compared with
specialist supervision of a physician. The study also showed that
extensive treatment with cognitive therapy after one year did not
produce any effect on increasing participation in the labor market or
received social security benefits (5).
In a large survey of five specialist centers for ME/CFS, conducted by
authorities in Belgium (6), it was two years seeing how we went with
over 600 patients. Cognitive therapy was an important part of
treatment. The survey concluded that "physical capacity did not
change; work was reduced after treatment." None of the 600 patients
had to be fresh.
WRONG INFORMATION. Thorvaldsen is not alone in the selling power of
cognitive therapy. Norwegian Health Informatics (nhi.no), which is
widely used by Norwegian doctors, claiming that "cognitive therapy
helps well in the majority," while a central Norwegian medicine
professor has claimed about ME/CFS that "most people can get out of
this through working with attitudes and behaviors. "
There are a number of similar examples of communication, but as you
can see from the research literature: This is outright misinformation.
Norwegian health workers should know that research shows that
cognitive therapy is first and foremost a good deal for a minority of
ME/CFS patients, just as it will be there for a small proportion of MS
and cancer patients. Cochrane article shows that the clear majority
will not have any additional effect beyond the usual medical
follow-up. PACE study shows that specialist supervision of a physician
is probably far more important than cognitive therapy.
GOOD enough? Is this good enough results that all the ME/CFS patients
to the cognitive therapy? Should we then also require the same for all
MS patients, which also shows the effect of cognitive therapy for a
proportion of patients (7)?
I'm not saying that cognitive therapy is not working. It has its
mission, as it has in other chronic disorders. Those who benefit from
such treatment should of course make an offer. But when professionals
largely sells how well the cognitive therapy has, it actually affect
how patients are greeted by the health service.
Research in cognitive therapy should be communicated in a more sober
manner than is often the case today. Patients and their treating
physicians deserve to get balanced and correct information to make
their choices.
Conflicts of interest: The author is relative to a mother with ME/CFS diagnosis.
Sources:
1) Cognitive behavior therapy for chronic fatigue syndrome in adults.
Jonathan R Price et.al. Cochrane Database Syst Rev. 2008 July 16; (3):
CD001027. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001027.pub2/full
2) How does cognitive behavior therapy Reduce Fatigue in Patients with
Chronic Fatigue Syndrome? The role of physical activity. Wiborg JF
et.al. Psychol Med. 2010 Aug; 40 (8) :1281-7.
http://www.ncbi.nlm.nih.gov/pubmed/20047707
3) Comparison of adaptive pacing therapy, cognitive behavior therapy,
graded exercise therapy, and specialist medical care for chronic
fatigue syndrome (PACE): a randomized trial. White PD et.al. Lancet.
2011 March 5; 377 (9768) :823-36.
http://www.ncbi.nlm.nih.gov/pubmed/21334061
4) Recovery from chronic fatigue syndrome after treatments given in
the PACE trial. White PD et.al. Psychological Medicine. January 2013
31:1-9. http://www.ncbi.nlm.nih.gov/pubmed/23363640
5) adaptive pacing, cognitive behavior therapy, graded exercise, and
specialist medical care for chronic fatigue syndrome: a
cost-effectiveness analysis. McCrone P et.al. PLoS One. 2012; 7 (8):
e40808. http://www.ncbi.nlm.nih.gov/pubmed/22870204
6) Chronisch Vermoeidheidssyndroom: diagnosis, behandeling one
zorgorgansatie. KCE reports 88A, Federaal Kenniscentrum voor de
Gezondheidszorg, 2008.
https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf
7) A randomized controlled trial of cognitive behavior therapy for
multiple sclerosis fatigue. van Kessel K et.al. Psychosom Med. Feb.
2008, 70 (2) :205-13. http://www.ncbi.nlm.nih.gov/pubmed/18256342
Chronicle and debate, Current Medicine 10/2013
Jørgen Jelstad
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