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Bad News for Denmark: ME patients, say new guideline, to be made well by physical training

Discussion in 'General ME/CFS News' started by Countrygirl, Jun 20, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    I'm sorry to be the harbinger, but really shocking news from Denmark is being forwarded on personal title by Rebecca Hansen. Also keep to her advice: if you do react on this, do it in a composed way, tho' it's difficult. Otherwise you may further harm the interests of our Danish friends...

    Rebecca has requested to share this as much as possible

    =============================================

    Physical Training as Treatment for ME

    The Danish Health Authority (SST) released their new treatment recommendations for ME patients on June 18, 2018, 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 translate best to a Functional Somatic Syndrome.

    It states that all forms of exercise are ok 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.

    Possible mechanisms?

    The guidelines give 2 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 say: ”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 deconditioning, 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.

    The Physical Training guidelines can be seen her in Danish. https://www.sst.dk/…/…/1CE89F3206874263888BA4719419B844.ashx
    I will try to post an English version 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. 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:

    https://politiken.dk/…/Når-kroppen-larmer-meget-er-det-ikke…

    Søren Brostrøm is on Twitter here: https://twitter.com/SSTbrostrom

    This cannot go unchallenged. It is an unscientific approach that ignores the facts. So many more patients will be harmed. Please write about this everywhere you can, but in a calm, fact-filled way. Inform, don’t attack. Insulting those your write to, will only harm our case. Our goal is to open eyes, not close ears.

    You can contact the Danish Health Authority (SST) here:https://www.sst.dk/en/about-us/contact
    sst@sst.dk , Tlf. +45 72 22 74 00, Fax: +45 44 88 95 99
     
    Hip, Kes, Forçe e Honra and 8 others like this.
  2. Diwi9

    Diwi9 Senior Member

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    I've observed that people will listen to what they want to believe. ME is a big unknown mess without clear answers. A psychologist walks in offering a simple explanation with a low cost solution...and guess who gets invited back to the table?
     
  3. Markus83

    Markus83

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    If they are referring to a Cochrane analysis, we have a hard stand.

    The danish professor for clinical studies, Peter Goetzsche (co-founder of the Cochrane Collaboration, Director of The Nordic Cochrane Centre and member of the Cochrane Governing board) is really a guy who is for the patients and says what he thinks is right even against pressure from outside (see his books Deadly psychiatry and organised denial and Deadly medicines and organised crime: How big pharma has corrupted health care).

    If we could convince him of the true etiology of ME/CFS, maybe he could intervene for a new or revisited cochrane analysis (he already said this has to be done for many Cochrance reviews concerning psychopharmacologic medicinces).

    I dont't know if it's possible that a more official site could set up a direct letter to Prof. Goetzsche and ask him for help. Just my 50 cents on that...
     
  4. Lisa108

    Lisa108 Senior Member

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    :jaw-drop:

    This whole thing is so bad, I don't know where to start. I'm so sorry, dear neighbours!
     
    Forçe e Honra likes this.
  5. Sunni

    Sunni

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    That's awful! Hopefully they'll reconsider soon...
     
    Forçe e Honra and Lisa108 like this.
  6. Kes

    Kes

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    Horrifying! Absolutely vital that this is challenged. They can't suppress the truth for long. The cat is out of the bag.Pace has been exposed for what it is. The problem is breaking through the strong grip of the establishment and discrediting their shibboleths. Please though as stated above if you comment, do so in a measured, articulate way that can't be used to do further harm to the cause. Be wise, people. How about quoting the views put forward by independent scientists with no axes to grind on just what tripe Pace is in so many respects. It would be laughable if it weren't still being used as a rod to beat people with. We need a strong, coordinated response perhaps getting a joint statement or media interviews from key players to break through and expose the bull manure of the BPS and their Danish buddies. Stay strong Danish friends and support each other.
     
    Last edited: Jun 21, 2018
  7. Lou Corsius

    Lou Corsius

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    CFS_for_19_years and Lisa108 like this.
  8. Asa

    Asa Senior Member

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