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Denmark has some recommendations for ME… and they’re pretty awful

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 recommendations 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.

Categories: All News, Denmark, Featured news, Politics

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21 comments on “Denmark has some recommendations for ME… and they’re pretty awful
  1. Peter Bonde says:

    The Danish recommendations are in stark contrast to neighbouring countries Sweden and Norway, and TOTALLY UNACCEPTABLE and must be altered!

  2. Petronella Perret says:

    This is terrible news. I don’t know what to say especially as I am in the midst of a bad crash and my brain feels inflamed. I’m not sure what exercise will cure that!
    My sympathy and support goes out to fellow sufferers in Denmark. This sounds so frightening for you. It is so important that we all stand together in solidarity and resist this abuse wherever it occurs.

  3. Mrs Ros McGuirk says:

    This shows how powerful vested interests can pervert the truth. We have to carry on and insist that the Danes accept independent monitoring of their policy.

    1. Rebecca Sears says:

      Mrs McQuirk,
      Thank you for your comments. I agree whole heatedly. I somehow thought the Danes were further advanced than this. Shocking.
      We must stand together. Thank you,

  4. Cindy Downey says:

    Very bad news for persons with ME in Denmark, and possibly other countries.

    The question arises re the deconditioning model of ME: how does the psychosocial club explain gradual onset in top athletes, and others who are fit, and continue to exercise several hours/week until they are finally too sick to carry on. Are these people with ME just wrong-minded without the deconditioning? If so, then these PWME don’t fit the psychosocial club’s own model for ME.

    1. Rebecca Sears says:

      Very good question. I was one in super athletic condition…before. Some days I can walk a block. Other days, I struggle to walk from my bed to bathroom.
      Denmark is better than this.

  5. Patricia K Smith says:

    I sent an email to the Danish Minister of Health to let them know how embarrassing it is for them to promote such backward medicine. sum@sum.dk Denmark wants to be a leader in science and research while treating their own population with Medieval methods…

    1. Rebecca Sears says:

      Thank you, Patricia.

  6. Georgia Christenson says:

    This is cruel punishment for anyone with ME. Please rethink this and retract your misguided report. The rest of science is in agreement that GET (graded therapy exercise) will harm those with this illness.

  7. Amy Keeton-Conley says:

    Wow! Talk about a slap in the face!

  8. JAY says:

    OMG – are these people for real or are they just complete idiots. To say that people are scared of exercise is a complete load of rubbish. I have tried hydrotherapy/graded exercise and I will not do it again. It’s a shame that these idiots cannot walk for a day, yet alone a week/month/year, in our shoes then they might understand a little more about ME.

    1. Rebecca Sears says:

      Please, Jay, never give up. We will someday get proper treatment and a cure.
      I wouldn’t wish this ME on anyone, but it does make me wonder if only ME patients have awareness.
      Agree with the ‘graded exercise’ nonsense.
      If that worked, I’d be racing to Denmark to applaud. As it is, I’m lying in a near fetal position after walking a block today.
      We stand for each other.

  9. Magda McQueen says:

    No different from Freud deciding that his female patients who described being sexually abused were making it up and had some mysterious “complex”. Has psychology really not moved on since then?

    1. Magda!!! I think your comment really gets to the source!! When my mother in law was diagnosed with multiple sclerosis, it was just another disease that over dramatic women got!! There was a time before that where Grma and her diabetes, was considered to be another psychological problem only women get!! I was at Mayo clinic when the pace program was being introduced!! My observation is, alot of psychiatrists interject opinions that keep them in business!! The pace plan was based on hypothesis and not clinical trials, the patients know better!! Researchers, listen to your patients!!!! Just saying

      1. Erin Norwood says:

        I completely agree with Magda and Janis.I am currently 49yrs. old, when I was 14yrs. old I developed, what I was later told, was an Extremely Severe case of Endometriosis.For the next 10yrs. dozens and dozens of Doctors and so called specialists told me, straight out, that I was nothing more than an over emotional little girl, that simply could not face up to the realities of womanhood! It nearly killed me, several times, before I was properly diagnosed! Even years later, after all of the many, many surgeries and treatments I STILL get Doctors who feel the need to let me know that I could have benefited immensely from psychological counseling instead! I think that ME is yet another one of these diseases that will need to hit the medical profession where it hurts before we will see any real and lasting changes.
        I only hope, that this time, I will not be forced to wait for treatment until it’s too late!!

  10. My comment is the one I posted to Magda!! Thank you

  11. Cindy Downey says:

    Freud was a cocaine addict for a number of years. He, along with many others in the health care professions did not recognize cocaine’s addictive, and destructive nature. Freud said this drug helped him with his depression, and it helped with fatigue.

    How much of our modern day psychology is based on Freud’s cocaine fueled theories?

  12. Justin Reilly says:

    This is so sick. Friggin Per Fink. Torturing Karina Hansen wasn’t enough for him. He needs to scale.

  13. John Farmer says:

    I jogged all my life, and ran a 50 mile ultra marathon—until coming down with me/cfs. I believe it was at Johns Hopkins “bench medicine” was championed. Test tubes, microscopes,etc. I am a physician, and it is easy to only treat what you see, and forget the rest. However there are conditions such as depression, about which a lot of research has been done, which can’t be seen. There are numerous numerical scales (self reporting). I believe we should develop a multipart scale to be self administered, and check the results against controls. Moaning and groaning will get us nowhere, and is hard to differentiate from other conditions.

  14. Tommy Gröndahl says:

    Kasta ut alla länder som inte följer WHO från FN! Finland hävdar att de SKA följa WHO men det fungerar inte med läkarna och pensionsanstalten som helst sparar genom att tortera folk till självmord! Så Danmark är lika efterblivet- bra att veta även om det framkom i Unrest dokumentären…

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