Article written by Rebecca Hansen, Chairman of the Danish ME Association

The Danish Health Authority (SST) released their new treatment recommendations for Myalgic Encephalomyelitis (ME) patients on June 18 as part of a guideline called “Physical Training as Treatment.”

The chapter on ME is nothing short of medical abuse.

It defines ME as fatigue and states that since there is no perfect criteria or biomarker for ME, they categorize ME as a Funktionel Lidelse, which translates best to a Functional Somatic Syndrome.

It states that all forms of exercise are okay, and that there is no evidence that any type of exercise can hurt ME patients. But because some patients worry about being harmed, it might be a good idea to give them some “psychological support.”

It uses the PACE study, and the Cochrane reviews from 2015 and 2017, which include PACE, as the main documentation for using exercise to treat ME.

Meanwhile in Finland, the Hospital District of Helsinki and Uusimaa (HUS) is also recommending it adopt the Danish model based on Per Fink’s clinic for its national guidelines for CFS. (See the draft guidelines.)

De-conditioned and Desensitized – causes of ME

The Danish guidelines give two possible mechanisms for the cause of ME. One theory is that ME is caused by deconditioning and if a patient just exercises, they will stop being tired. The guidelines also says: ”Besides that, it is likely that the patient will achieve a psychological effect by discovering that physical activity does not necessarily lead to further fatigue.”

The second theory is that ME is caused by an oversensitive nervous system, and that exercise will help desensitize the nervous system, so the patient can tolerate stimulation, like exercise, better.

They also claim that exercise decreases inflammation, but uses a study about rheumatic diseases as a reference.

And what about all the great ME research that has come out lately about cytokines, inflammation and metabolic dysfunction? Well, this guideline says that all of those things can be caused by de-conditioning, obesity and insulin resistance, which of course can be solved by exercise.

They completely ignore the warnings from ME experts that GET can be harmful. They claim there are no contraindications in recommending GET for all ME patients.

This guideline is what all doctors will be referred to in treating ME in Denmark. And it will be the basis for treatment at the new Functional Somatic Syndromes clinics that the government is recommending. The recommendation is that the new centers be based on Per Finks clinic.

Read the Physical Training guidelines in Danish. An English version is coming soon.

Propaganda Storm

The publication of these recommendations came with a state-planned propaganda storm. Newspapers, TV and radio all had stories saying that 300,000 Danes had symptoms like tiredness and pain and that these symptoms were really called Funktional Lidelse. They include ME, fibromyalgia, IBS, tinnitus, whiplash and many others under this undocumented umbrella term Funktionelle Lidelser. The Danish Health Authority’s recommendat ions for treating all these illnesses that they call FL can be seen here in Danish.

The health director in charge of this, Søren Brostrøm, wrote in an opinion piece that ME is better understood as chronic tiredness. That it really is a somatoform illness. He said it was better to forget about a diagnosis and just concentrate on symptoms. He explained how “experts” thought that CBT and GET were the best treatments and claimed that now patients were going to get the coordinated help they needed. GET and CBT for everyone.

Original version of Rebecca’s article was posted in the ME Global Chronicle on June 25.

International Pressure against GET Continues

Meanwhile, the international community sent another letter last month to the editor of The Lancet calling for an independent re-analysis of the PACE trial. And the Workwell Foundation issued a letter in May to healthcare providers outlining the dangers of prescribing GET treatment for people with ME.