ME/CFS is (bio)logically explainable; Standard treatment is ineffective, and even potentially harmful.

2011
Frank N.M. Twisk 1 and Dr. Michael Maes 2

[English translation of the statement in Dutch]

According to common opinion is Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) a medically unexplained syndrome and is cognitive behavorial therapy (CBT), in combination with graded exercise therapy (GET), the only evidence-based effective therapy.

In an article in Tijdschrift voor Psychotherapie (July 2011), a Dutch scientific magazine for psychologists/psychotherapists, Twisk, Arnoldus and Maes substantiate that these claims are false.

Characteristic symptoms of ME/CFS, like exhaustion, pain, cognitive impairment and an aggravation of the various symptoms after minor exertion (post-exertional malaise), can (bio)logically be explained at large by various organical abnormalities, which have been found repeatedly in ME/CFS: immunological aberrations (amongst others intracellular inflammation), oxidative en nitrosative stress, hyperpermeability of the gut) and their sequels, mitochondrial dysfunction, hypoperfusion et cetera.

The evidence-based claim that CBT/GET is the only effective treatment for ME/CFS, which could result into recovery up to 70% of the patients, is false.

CBT/GET is not significantly more effective than standard medical care, and only results into subjective improvement in ±30% of people with “chronic fatigue” (not ME/CFS), which is not reflected in objective improvement, and by large not sufficient to qualify as moderate effective.

Even worse, CBT/GET has a potential negative effect in 30-50% of the ME/CFS patients.

The authors stress the need for a drastic change of direction, from the current psychological-oriented outlook towards a medical approach, aimed at:

  • an objective and quick diagnosis, based upon clinical criteria;
  • tests to objectively measure symptoms (e.g. repeated exercise tests) ;
  • unraveling the demonstrated biological abnormalities in more detail
  • in the ME/CFS patient group and subgroups thereof (based upon biomarkers);
  • developing and testing pharmaceuticals, supplements etc. that reverse the biological abnormalities established in (individual) ME/CFS patients.

Contact information:
1 ME-de-patiënten Foundation, Limmen, the Netherlands
Frank Twisk MBA BEd BEc
Zonnedauw 15
1906 HB Limmen
Nederland
frank.twisk@hetnet.nl
072-505 4775
2 Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium.
Dr. Michael Maes
MaesClinics@TRIA
998 Rimklongsamsen Road
Bangkok 10310
Thailand.
dr.michaelmaes@hotmail.com
00-66-2-6602728
ME/CFS, the psychotherapist and the power(lessness) of the evidence beast.
Tijdschr Psychother. 2011; (37)4: 233-258.
Frank N.M. Twisk, Rob J.W. Arnoldus en Michael Maes. SUMMARY:

Cognitive Behavioral Therapy (CBT)/Graded Exercise Therapy (GET) is often proclaimed to be the only evidence-based therapy for Myalgic Encephalo­myelitis (ME)/Chronic Fatigue Syndrome (CFS).

However, medical research has proven that the psychosocial explanatory models of Vercoulen and others – being the justification for CBT/GET – are invalid, and that CBT/GET is not only ineffective, but also potentially harmful for many patients.

Characteristic symptoms, like pain, cognitive impairment, fatigue and post-exertional malaise, can plausibly be explained by physical abnormalities, especially inflammation, oxidative/nitrosative stress, metabolic dysfunction, cardiovascular disturbances, gastro-intestinal aberrations and ion channel dysfunction.

The dominance of the psychosocial explanatory model and CBT/GET has pro­found medical, juridical, financial/social and psycho/emotional consequences for patients.

Based upon these observations the psychologist/psychotherapist should question his role as CBT/GET therapist, also because, as a result of psychologising ME/CFS, many patients are reluctant to seek essential psychological counselling aimed at coping with the disease.

Last Update 04/08/2011