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David Tuller: Trial By Error: Waiting for Godlee

Discussion in 'General ME/CFS news' started by Kalliope, Jul 11, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Trial by Error: Waiting for Godlee

    This morning I sent another letter to Fiona Godlee, editor-in-chief at The BMJ and editorial director at BMJ. Hopefully she will take action soon on the two pediatric papers whose publication has demonstrated that something is seriously amiss at the journals under her stewardship, at least when it comes to this domain of research. The ongoing refusal of the journal editors and Dr. Godlee herself to take responsibility for this mess and clean up their mistakes is rather shocking.
    TiredSam, Webdog, Esther12 and 19 others like this.
  2. Melanie

    Melanie Senior Member (Voting Rights)

    "The Lightning Process is a goulash of osteopathy, positive affirmations, and neuro-linguistic programming."

    Great line!
  3. Keela Too

    Keela Too Senior Member (Voting Rights)

    So frustrating I tried to add the following comment on Virology Blog, but it doesn’t seem to stick: (I tried splitting it up, also using other IDs eg FB Twitter, Discus, Google! Still no joy. Meh!)

    All these therapies, that attempt to use mind games to convince the chronically ill that they just need to abandon their sick roles, are a huge problem for patients.

    Serious ill-health cannot be talked away. Yet the damage done by the gas-lighting techniques employed during these treatments can cause real harm. Eg. ME patients persuaded to exercise can end up hurled into the living hell of Severe ME. Meanwhile so-called experts assert that patients could recover if they simply chose to adhere to therapy processes!

    Surely this is psychological abuse? Yet it seems that there is no means of officially reporting the harms experienced when patients undertake such therapies.

    The yellow card system is not designed to collate harms from psychological therapies (presumably because they are generally seen as benign) and so with no reported harms being gathered the therapies are described as “safe” by default.

    Something needs to change. Fortunately Jim Shannon MP, and the Countess of Mar have been following up on the Yellow Card issue. The situation is still unclear however. (I wrote a blog on this yesterday.)

    Mind based therapies have had a free pass for too long. It is time they faced up to the need to be accountable to both their scientific critics, and the patient populations affected by their assertions.

    Thank you David for keeping up the pressure on the journals that allow those questionable studies to remain on the record.

    With the NICE guideline review coming up, this task is becoming ever more urgent. Could this be a reason for the tardiness of the journal responses? If so, it demonstrates an additional callousness towards patient wellbeing.
    mango, Graham, TiredSam and 20 others like this.
  4. FreeSarah

    FreeSarah Senior Member (Voting Rights)

    UK -ish
    mango, Graham, TiredSam and 12 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

    In addition Lightning Process is defined as alternative treatment by the Norwegian Directorate of Health, the consumer ombudsman and The National Research Center in Complementary and Alternative Medicine (NAFKAM).

    Nifab (NAFKAM's website): Lightning Process
    google translation: Lightning Process

    (my bold)
    Norwegian LP instructors have maintained over time that they are not subject to the alternative treatment legislation. Their main argument for this has been that they do not offer health-related treatment according to §2 of the Act , but are teaching self-help techniques without the responsibility for treatment that accompanies this Act. In such a perspective, the safety of patients attending LP courses to combat their health problems will be different.

    NAFKAM, the Consumer Ombudsman and the Norwegian Directorate of Health agree with their assessments of this and state that Lightning Process is perceived as health-related treatment, which is mainly done outside the healthcare system, because the method aims at remedying various health problems and the courses have a therapeutic / health-related goal in which the instructors interpret the patient's symptoms. LP instructors are therefore to be regarded as alternative therapists covered by the regulation as set out in the Act and the corresponding regulations.

    mango, TiredSam, Nellie and 6 others like this.

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