EMEA: PRESS RELEASE - For Immediate Release

EMEA Writes to Members of the Danish Funktionelle Lidelser Working Group

November 2016

EMEA: PRESS RELEASE - For Immediate Release

The European ME Alliance is a collaboration of 13 ME organisations in European countries who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis and increasing awareness of this debilitating neurological disease.

The Danish Funktionelle Lidelser Working Group is deciding how to evaluate and treat ME patients in Denmark.

The European ME Alliance (EMEA) has been concerned by the likely outcome of this process and has written to the Working Group to explain how they should be treating ME.


The Danish Health Commission decided that they needed to do something about the patients who have functional somatic syndromes.

So they appointed a working group - Danish Funktionelle Lidelser Working Group.

They then invited EMEA Denmark (Danmarks ME Foreningen) and one other group to attend a 2-hour meeting to provide input.

A few other patient organisations also requested to be able to attend - including representatives for fibromylgia, whiplash, headtrauma, etc

There was no agenda.

No minutes were taken.

The official at this meeting was Dr Ane Bonderrup, who was to take notes and give them to the working group.

The impression obtained from the meeting was that this was purely a way for the Health Commission to claim that they have consulted patients.

The functional somatic syndrome (ME) working group in Denmark met 4 times this autumn (2016) and is due to make a report early next year (2017).

There was no person found to represent gastrointestinal or infectious medicine in the working group.

The Danish ME Association plans to send the group their 112-page report and continue to feed them information during the next few months.

As there is now sufficient information about ME - following the 2015 Institute of Medicine (IOM) report from NIH [2] and from advances in high-quality biomedical research into this disease - there is no excuse for this group to mix ME in with functional disorders or Multiple Unexplained Symptoms (MUS) groups.

The letter to the Danish Funktionelle Lidelser Working Group is available here - Letter to DK Working Group November 2016.pdf

Further Information:

  1. Forskningsklinikken for Funktionelle Lidelser
  2. IOM Report

EMEA Letter to Members of the Danish Funktionelle Lidelser Working Group

Dear Members of the Funktionelle Lidelser Working Group,

The European Myalgic Encephalomyelitis Alliance (EMEA) is an organisation of national patient organisations and charities in thirteen European countries campaigning for better research and more funding for research into Myalgic Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3.

EMEA is aware that your group will be deciding how to evaluate and treat ME patients in Denmark.

We urge you to recommend that a centre be established for the treatment of ME, that is separate from the overly-broad research concept of Funktionelle Lidelser or MUS.

Such a centre should follow the model of centres in Sweden and Norway and it should be using the latest bio-medical treatments and management strategies for ME.

The centre in Norway has experts in the fields of immunology, microbiology, psychology and neuro-chemistry [1].

A Danish ME centre should draw on the expertise found in international ME research centres, such as the ME/CFS Initiative at Stanford University (USA) [2] and the National Centre for Neuroimmunology and Emerging Diseases, Griffith University (Australia) [3].

We urge you to recommend the immediate end to the current practice of treating ME patients with cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

CBT and GET have been shown to be ineffective for ME patients and GET can cause a worsening of the illness [4] that can last months, years or be permanent [5, 6].

CBT and GET are not evidence-based treatments.

A recent review of CBT and GET by Sten Helmfrid, PhD in a Swedish journal, Socialmedicinisk Tidskrift [7], states

"There have been a number of studies on Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS based on a treatment model where the disease is perpetuated by cognitive processes.

Although the studies are flawed and the model lacks scientific support, the treatments are described as evidence based. The studies are non-blinded and rely on subjective outcomes.

There are no objective measures of adherence. The diagnostic criteria vary, and the participating patients often have one or several psychiatric diagnoses apart from suffering from chronic fatigue.

The underlying model has no theoretical foundation and is at odds with physiological findings.

Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful.

Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based."

We agree with these comments.

Two reports from large official bodies [8, 9] in the US have downgraded evidence from CBT and GET studies.

CBT, as it is currently used in Denmark, is harmful to patients as it tells them to ignore their symptoms. It teaches them that their illness is caused by a stress-response, is maintained by the patient focusing on their illness and by the belief that their illness has a physical cause.

This hypothesis is completely unproven and coercing the patient into thinking that they are responsible for their inability to get well is extremely harmful.

GET harms patients by pushing them to do more than their system can tolerate. There is a large and growing body of evidence that explains why ME patients have exercise intolerance. Exercise intolerance is, in fact, the hallmark of ME.

It is therefore completely illogical to assume that GET would be a curative or helpful treatment for ME.

ME is a complex, chronic, multi-system illness which seems to have several distinct subsets. It should be studied and treated by itself, and not included in the overly-broad research group of Funktionelle Lidelser.

In 2008, a Danish working group recognised the need for an ME centre to be established in Denmark.

Sadly, this never happened.

There are approximately 15.000 ME patients in Denmark and most of them are too ill to work.

They need your help.

We implore you to recommend that a true ME Centre be established as soon as possible.

Yours Sincerely

EMEA Board





4 A review on CBT and GET in ME/ CFS: CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS, Twisk, Maes


6 Bulletin of IACFS/ME

7 Studies_on_Cognitive_Behavioral_Therapy_and_Graded_Exercise_Therapy_for MECFS_are_misleading

8 NIH Pathways to Prevention Workshop Advancing Research into Myalgic Encephalomyelitis

9 CFS Advisory Committee CFSAC IOM P2P Working Group Recommendations



Last Update: November 2016

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