concerning the new German guideline on “tiredness”
In Germany, a
revised guideline on "tiredness” has been issued in January 2012: the notorious
The Deutsche Gesellschaft für Allgemeinmedizin (DEGAM) corresponds to the
British NICE and is in charge of issuing medical guidelines.
Leitlinie Müdigkeit also includes ME/CFS (Myalgische
Enzephalomyelitis/Chronic Fatigue Syndrome), a disease which is classified in
ICD-10 as disease of the nervous system (chapter VI) as G93.3.
However, in violation of the WHO classification ME/CFS is
described throughout the guideline as mental and behavioural disorder according
to chapter V of ICD-10.
The authors of the revised guideline on „tiredness“ ignore the
fact that ME/CFS is not a mental or behavioural disorder but a severe neuro-immunological
multisystem disease of as yet unknown origin.
Ignorance and denial of the state of the art
The guideline completely ignores the extensive body of medical
evidence on the characteristic biomedical abnormalities even though patient
groups submitted lots of studies proving these abnormalities. They ignore, for
instance, studies like that of the Norwegian oncologists Fluge and Mella who
showed that at least 50% of their ME/CFS patients greatly improved with the
immunomodulatory drug Rituximab.
Instead the guideline exclusively reflects the Wessely school’s
“biopsychosocial model“. The German guideline draws all its conclusions
regarding diagnosis and treatment from the contested British NICE guideline
where even its principal investigator Michael Sharpe conceded that it is not a
study on ME/CFS but on idiopathic states of fatigue.
Accordingly, also the treatment
recommendations are pervaded by the ideas of the biopsychosocial model. The
German guideline stipulates that further diagnostics have to be avoided because
they allegedly had an “iatrogenic pathogenic potential” and would only
strengthen the false illness beliefs of the patient, thus likewise
“somatisising” patient and doctor.
The only recommended treatment options
are cognitive behavioural therapy and graded exercise therapy (CBT and GET).
Even though the authors state that in doing GET „patients should avoid
overexertion“ the authors negligently ignore the vast body of literature
giving evidence of the dangers of physical exertion and its proven detrimental
effect on people with ME/CFS. They ignore the manifold studies showing that
physical training fuels the disease mechanisms, the immunological and
neuroendocrine abnormalities in this disease.
Even though the German guideline
mentions the Canadian Consensus Criteria they never draw any conclusions from it
with regard to diagnosis and treatment. On the contrary, they grossly distort
the message of the CCC and, by false translation, maintain that the CCC would
describe a state of “tiredness”.
The guideline causes harm to people
The false description of ME/CFS has
profoundly damaging effects on patients.
The guideline is an instruction for
systematically misdiagnosing ME/CFS as a depression or another mental disorder.
If a physician follows the instructions of that guideline he will inevitably
misdiagnose ME/CFS and not realise that it is an organic disorder. Consequently
the patients will be referred to psychiatrists and will be forced to undergo
“activation therapy” in psychosomatic clinics, leading to further damage.
As a consequence of this „blaming the patient“-strategy patients
will be denied social benefits. The guidelines support the unsubstantiated
prejudice that patients have a self-inflicted behavioural disorder. Illness is
redefined as deviance and physical activation is declared as the magic bullet.
Patients who are not able to follow the treatment regime are blamed for the
persistence of their disease.
The patients’ plight is perpetuated
Thus, the new“ German guideline will greatly contribute to the
perpetuation of the plight of ME/CFS patients in Germany.
Instead of providing information on the devastating effects of
this disease it is depicted and belittled as an extreme state of “tiredness”.
Instead of providing guidance for an appropriate diagnosis and management of
ME/CFS both physicians and their patients are misled.
Instead of reflecting the state of the art the guidelines spread
the unsubstantiated myths of the Wessely school.
Instead of differentiating between states of fatigue and the
distinct disease entity ME/CFS they mix everything together, in an attempt to
make the disease disappear.
Instead of following the example of the Norwegian health minister
who recently officially apologized to the ME/CFS patients for decades of neglect
and mistreatment and who retracted the respective guideline, the authors of the
German guideline chose to perpetuate this very neglect and mistreatment.
Patients protest in the strongest terms against the German „Leitlinie
On being presented with the new German guidelines
the European ME Alliance
protests in the strongest terms against the revised German Leitlinie Müdigkeit.
The guideline grossly neglects the obligation to exercise medical
diligence, to an extent that might even be indictable according to German law.
The guideline’s treatment recommendations for ME/CFS are an
instigation to deliberate and grossly negligent physical injury.
The guideline violates in many respects the code of medical
ethics which stipulates the obligation for advanced vocational training, the
obligation to care for patients with appropriate diagnostic and treatment
approaches, and which forbids unreasonable promises of cure.
We ask the persons and institutions in charge to immediately
withdraw this “Leitlinie Müdigkeit” and to issue guidelines for ME/CFS which
reflect the state of medical art.
Further we ask that they drop the unreasonable myths of the
Wessely school, and the "biopsychosocial model”, which even the Wessely school
itself now state are not appropriate for ME/CFS.
And we ask them to take into consideration the vast body of
medical evidence with regard to the physical abnormalities in this debilitating
Leitlinien Müdigkeit über „CFS“ – ein Zerrbild medizinischer Wissenschaft
Nr. 2: Müdigkeit - Update 2011
version of ICD-10: ICD-10-GM Version 2012Internationale statistische
Klassifikation der Krankheiten und verwandter Gesundheitsprobleme, 10.
Modification, Version 2012
Studies and articles on
the effect of physical activity in ME/CFS and related pathophysiology:
Surveys on the
effectiveness of CBT/GET in ME/CFS:
Magical Medicine: How
to Make a Disease Disappear, Malcom Hooper
of viruses in ME/CFS, Margaret Williams
Comments on the NICE guidelines
Quotable Quotes about
ME/CFS, Margaret Williams
Excerpts in German:
Professors Frank J M van Kuppeveld and Jos W M van der Meer, Margaret
German version: http://www.cfs-aktuell.de/februar12_6.htm
the Indefensible, Margaret Williams,
from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in
Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study,
Immunological abnormalities as potential biomarkers in Chronic Fatigue
Syndrome/ Myalgic Encephalomyelitis Journal of Translational Medicine 2011,
9:81 doi:10.1186/1479-5876-9-81 Ekua W Brenu, Mieke L van Driel, Don R
Staines, Kevin J Ashton, Sandra B Ramos, James Keane, Nancy G Klimas, Sonya
Encephalomyelitis/Chronic Fatigue Syndrome A Clinical Case Definition and
Guidelines for Medical Practitioners