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Professor Saugstad on undocumented treatment for ME/CFS

Discussion in 'General ME/CFS News' started by deleder2k, Jul 14, 2015.

  1. deleder2k

    deleder2k Senior Member

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    Professor of Pediatrics Ola Didrik Saugstad at Oslo University Hospital has written article in one of the two largest major national newspapers in Norway:

    Thanks to Fryvil for translation ( http://fryvil.com/2015/07/14/saugstad_on_me/ )

    Published 14 July 2015, at. 8:00
    Written by Ola Didrik Saugstad

    [​IMG]
    TIME TO LEARN: Should we not learn from the mistakes made by researchers with home knitted hypotheses? asks professor of pediatrics at the University of Oslo, Ola Didrik Saugstad, referring to the treatment of the disease ME/CFS.

    Undocumented treatments have led to some of the worst disasters in the history of medicine.

    Many ME patients feel today that the public health system is exacerbating their condition.

    In 1981 Bruno Bettelheim wrote: «All my life I have worked with children who had their lives destroyed because their mothers hated them.» Bettelheim views influenced the view on autism for years. He believed that the mothers of autistic children were cold, so-called «refrigerator mothers» who hated their children and thus induced autism on them. Today we know that autism is a complex biological disease. Bettelheim, who also believed allergy is psychologically triggered, did irreparable damage with his undocumented hypotheses.

    The American pediatrician Benjamin Spock’s book «The Child» sold 50 million copies and contained many fine thoughts. But Spock made a disastrous error when he in the 1956 edition recommended that infants should lie on their stomach instead of their back. Thus, he contributed greatly to the thousands of infants who died in the SIDS epidemic culminating in the late 1980’s when they realized that laying the babies on their stomach increases the risk of SIDS. Bettelheim and Spock are examples of authorities who did not base their recommendations on scientific evidence, but on their own thoughts and beliefs. We should learn from this not to make similar mistakes. But do we?

    An example on how we don’t, is the stress theory that has become popular as an explanation for ME. Many believe that one can be cured of the disease by mastering ones’ own stress. «It’s all in your head, you just need to convince yourself to get well», many patients have been told. But this explanation has never been scientifically proven. On the contrary, those behind the stress theory have selectively used some findings that fit with their own hypothesis. This is what is called an inductive fallacy.

    It was such a catastrophic failure Bettelheim and Spock did, and now it seems that the same mistake has been made by those who believe that ME is a stress response. For a new report from the Institute of Medicine in the US states that ME/CFS is a physical condition, not a mental illness. The head of the committee told The Washington Post on February 10 this year that «We must now once and for all dismiss the idea that this is just psychosomatic or that people imagine this, or simply are lazy.» [Quote not checked with the English original.]

    About the same time Columbia University Press could report from a study that showed that ME/CFS patients sometimes have very high levels of inflammatory markers, cytokines, but only early in the disease. Later, patients often have lower levels than in healthy controls. This may explain why studies on inflammation markers in ME have given contradictory results. The researchers had not taken into account when in the course of the disease the measurements were made.

    Another recent study has shown that muscle cells from ME patients respond differently than healthy muscle cells to electrical stimulation. ME muscles do not take up glucose as one would normally expect. This may explain the energy failure ME patients describe at the slightest exertion.

    These are important findings because they confirm what ME patients have claimed, and it explains the strong contrast that has arisen between the ME-scientists who believe in stress theory and the patients themselves. It is simply the patients who are right and not the therapists with their theories that are not adapted to reality.

    Despite the inconclusive scientific basis, the stress theory has received considerable support in the Norwegian health care system and in the public. Now we understand why many ME patients feel that the public health system is exacerbating their condition. Many feel they are being bullied by NAV [the National social welfare system], and parents are threatened by child protective services because they protect their child from the harmful stress theory. Conditions have developed so that ME-patients’ situation in Norway has become a human rights’ problem.

    After the new results were published stating that ME is an immunological condition, one would think that the conditions were better for Norwegian ME patients. But the follower of the stress theory do not give up. In a recent posting on NRK.no/viten eg. Ingrid B Helland, head of the Norwegian Centre service for CFS/ME, claims that «we really don’t know much.» Then she tells about a small Norwegian study which found no increased cytokines in ME patients. Thus she weakened the new signals from the United States, without mentioning that the Norwegian study has done just the mistakes the US study reveals. In the same article senior researcher Lille Beth Larun claims about ME: «What is proven by research to give releif in ME is graded exercise therapy (GET) and cognitive therapy (CBT).» But these two approaches have made very many ME patients sicker. What Larun does not tell is that one does not find any effect of CBT in ME if using strict diagnostic criteria. Rather than rejoice the new knowledge about ME, Helland and Larun continues to cast doubt on the US findings and helps to maintain a status quo for the treatment of ME patients in Norway.

    Should we not start to learn from the mistakes made by researchers with home knitted hypotheses? The history of Sally Clark is more than sobering. She lost two sons in SIDS and was arrested in 1998 along with her husband on suspicion of having killed their children. In the trial the English pediatrician Roy Meadow claimed that the chance of two children dying in SIDS was 1 in 73 million. Clark was convicted of murder and began atonement in Styal women’s prison. Later it came out that one of her sons had an infection and could have died of natural causes, but the evidence for this was held back for the trial. Later it also turned out that the statistical data Meadow had submitted had major shortcomings. The court had placed more emphasis on Meadows private views than on the facts. In 2003, Clark was acquitted after 3 years in prison.

    For years, ME patients has been discredited and forced to undergo unsuitable treatments that made them sicker, they have been forced by NAV [the National social welfare system] to take the undocumented LP [Lightning Process] treatment, and good parents who have protected their children have been threatened by the CPS.

    The paradigm shift in the perceptions of ME gives hope for a better future for these afflicted patients. That hope Norwegian ME patients should also be allowed to share.
     
    Last edited: Jul 14, 2015
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Wow, excellent article that deserves a wide audience.
    Thanks for sharing and for getting the translation.

    Now if only the thoughts in this article were turned into a section of study in a mandatory medical course.
     
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  3. mfairma

    mfairma Senior Member

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    I'm sure something is lost in translation, but I enjoyed the phrasing of "theories that are not adapted to reality." How politic.
     
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  4. A.B.

    A.B. Senior Member

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    Finally someone from within the system who has the guts to tell it as it is.

    Medicine suffers from the irrational belief in psychogenic illness. As a result people who are already in difficult situations have their lives made even more difficult. Not to mention the wasted money and energy that could be used to build real knowledge which can lead to real treatments.
     
  5. Bob

    Bob

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    I didn't know the situation in Norway was so bad. It sounds very similar to the UK.

    Thanks for posting @deleder2k :thumbsup:
     
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  6. Asa

    Asa Senior Member

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    (Summary translation from Norwegian)

    In 2011, Professor Ola Didrik Saugstad [an internationally recognized and internationally honored Norwegian physician who is also a medical-ethics commentator] stated that there are studies that show that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) make ME patients worse. Saugstad said that he was consequently very much against these therapies and that these therapies were developed by individuals who do not believe that ME is a physical illness.

    Saugstad added that those who advocate CBT/GET have often never even met those who are most ill, and that he (Saugstad) believes it is a violation of medical ethics to prescribe therapies to patients whom one has never examined.

    Saugstad said too that it is a serious abuse and violation to force psychiatric treatment for ME and that these patients are treated as badly as individuals in the 1950s and ’60s whom the medical community lobotomized.

    In response to such criticisms, Assistant Health Director Bjørn Guldvog apologized and said that ME patients do not have adequate healthcare.

    http://web.archive.org/web/20150624211709/http://www.tv2.no/a/3609260
     
    Last edited: Jul 15, 2015
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  7. Battery Muncher

    Battery Muncher Senior Member

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    Great find, thanks for posting.
     
  8. Sasha

    Sasha Fine, thank you

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    I enjoyed the one about 'home-knitted hypotheses'.

    Great article!
     
  9. Sidereal

    Sidereal Senior Member

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    Good essay. There is really no evidence that any illness is caused by stress or that anyone with any diagnosis should be forced to undergo various quack therapies.
     
  10. jimells

    jimells Senior Member

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    northern Maine
    Personally, I have a hard time calling anyone who believes in the stress theory a "scientist", although I certainly understand that if the author called them "faith healers", the editors might object...
     
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