Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Retraction Watch: PLOS ONE issues editor’s note over controversial chronic fatigue syndrome research

Discussion in 'General ME/CFS News' started by Dolphin, Dec 16, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Last edited: Dec 16, 2015
    MeSci, Woolie, Yogi and 15 others like this.
  2. Denise

    Denise Senior Member

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    I am not holding my breath but I would love to be pleasantly surprised.
     
    Kati, barbc56 and Bob like this.
  3. barbc56

    barbc56 Senior Member

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    Be still, my beating heart! Too much good news on this and other threads, may make me crash!

    But I'm not complaining.:)

    Barb

    Maybe all these positive events have to do with xmas, Hanukkah, Ramadan, celebration of the winter solstice, all of the above, none of the above, etc.?

    Almost forgot, Festivus.:D
     
    Last edited: Dec 16, 2015
    Valentijn and TiredSam like this.
  4. Daisymay

    Daisymay Senior Member

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    Margaret Williams left this comment on the Retraction Watch article which shows PACE were negligent over patient data security during the trial:

    Margaret Williams December 17, 2015 at 11:01 am
    Professor Peter White is claiming that he promised to keep patients’ data securely; has he forgotten that some of this data was not held securely? The following extract comes from “Magical Medicine: How to make a disease disappear” (p256):

    http://www.meactionuk.org.uk/magical-medicine.pdf

    On 31st March 2006 Peter White wrote to the West Midlands Multi‐centre Research Ethics Committee to inform them of the theft of a digital audio recording (DAR) of GET sessions from Centre 03 (which is King’s College, ie. Trudie Chalder’s Centre). This confidential information was stolen from an unlocked drawer in the therapists’ office. Peter White informed West Midland MREC that: “There are no lockable cabinets in any of the therapists’ rooms so the drawer was not locked” (cf SSMC Participant Information Sheet). His letter continued:

    “The burglary was reported to Southwark police on the day that it happened, which was Wednesday 22nd March 2006. The crime number is 3010018‐06. The therapist was away on leave 22nd‐24th March and therefore the DAR was not found to be missing until Monday 27th March 2006”. It was only after the theft that Professor Trudie Chalder sought advice on how to secure the data properly.

    The letter also said: “The Principal Investigator for this centre, Professor Trudie Chalder, is awaiting advice from the Trust R&D as to whether the affected participants should be made aware of the theft”.

    The same letter stated that recordings were being downloaded to CD only on a monthly basis, a working methodology that is not compatible with the promises of confidentiality set out in the “Invitation to join the PACE trial” leaflet.

    The letter carries a handwritten annotation dated 13th April 2006: “Noted. Sad! No action needed”.

    It seems that the patients involved were not warned that confidential information about them had been stolen.
     
    mango, Kati, lycaena and 5 others like this.
  5. lansbergen

    lansbergen Senior Member

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    Do I read this correctly?

    Not backed up data were stolen?
     
    mango, Valentijn and John Mac like this.
  6. Daisymay

    Daisymay Senior Member

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    I checked with MW and she said:

    The data stolen were not backed up.

    The same letter from Peter White to the MREC makes this clear:

    The DAR “contained six sessions recorded with five participants which had not been downloaded at this time, and therefore is not available for review”.
     

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