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QMUL (PD White's base) claim simple request for 6-minute walk results in £5m PACE Trial "vexatious"

Discussion in 'General ME/CFS News' started by Dolphin, Dec 1, 2015.

  1. Dolphin

    Dolphin Senior Member

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    ukxmrv, barbc56, DanME and 4 others like this.
  2. Denise

    Denise Senior Member

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    mango, DanME, Valentijn and 3 others like this.
  3. worldbackwards

    worldbackwards A unique snowflake

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    I don't know the history of this too well. Does anyone know how many claims have been made? How many have they released data for? Any?
     
  4. TiredSam

    TiredSam The wise nematode hibernates

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    When is this small but vocal minority of vexatious researchers going to stop calling people vexatious?

    Is there a size limit on a group that can be labelled vexatious, and what happens when we exceed it? It's not just a few patients who are asking for the data now, it's journalists, scientists, 10,000 petition signatories ...

    This "vexatious" nonsense is looking more self-evidently ridiculous by the minute.
     
    Susanna D, Simon, ukxmrv and 14 others like this.
  5. DanME

    DanME Senior Member

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    These people!! Is the university not ashamed of this behavior? Calling anyone vexatious (a new English word I 've learned), who disagrees or is interested in the data, declining discussions without giving any reasons, giving up all diplomacy, showing outright disgust for patient's rights and transparency.

    How can this be tolerated by the dean?
     
    lycaena, A.B., MeSci and 7 others like this.
  6. Esther12

    Esther12 Senior Member

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    They're down the rabbit hole.

    Last time you overturned your own claim that Dr Sheridan's request was vexatious!

    https://www.whatdotheyknow.com/request/raw_data_for_6mwt#incoming-565751

    So good that there's public info on these requests. I wouldn't believe QMUL's behaviour if I couldn't see it for myself.
     
    leela, Valentijn, mango and 6 others like this.
  7. msf

    msf Senior Member

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    This is the most ridículous thing I can imagine a university (even if it is a university hospital) doing. To make it worse, they seem to think that using vocabulary from the 19th century will disguise their intellectual bankruptcy.
     
    leela and Valentijn like this.
  8. user9876

    user9876 Senior Member

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    If QMUL were acting reasonably they would have negotiated with Anna about what information they could provide within reasonable costs. I think this is basically Anna's third attempt to get objective data associated with those who recovered. I think guidance suggests a negotiation can take place.
     
  9. DanME

    DanME Senior Member

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    "For your information this is £450, calculated as the
    estimated cost of one person spending 18 hours in determining whether the
    information is held, then locating, retrieving and extracting the
    information."

    Seriously? A person need more than 18 hours to get the raw data from a six minutes walking test with four arms? Somewhere they have an Excel chart with all the data. I seriously doubt, that every data point was written down by hand on a different file at the opposite ends of the hospital. Even if they had to anonymize the data, if wouldn't take 18 hours. I even doubt, that they have anonymize the data, which is usually done before analyzing it.

    This is outrageous.
     
    Last edited: Dec 1, 2015
    helen1, ukxmrv, leela and 5 others like this.
  10. user9876

    user9876 Senior Member

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    At one point their 18 hours included the process of interviewing and hiring a statistician as apparently QMUL had no one capable of doing this.
     
    leela, MeSci, Valentijn and 2 others like this.
  11. SOC

    SOC Senior Member

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    Sheesh. :rolleyes: What happened to the principle of maintaining the data in a form that can be readily accessed if requested? Isn't that a required practice in all externally funded research? Or am I mistaken?

    Why do they need a statistician to release raw data? By definition, raw data is unmanipulated, statistically or otherwise. AFAIK, no one is asking for new statistical interpretations of the existing data so no statistician required.
     
    lycaena, leela, Keela Too and 2 others like this.
  12. A.B.

    A.B. Senior Member

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    It's like asking for fresh fish at the market and being told hiring a Sushi chef would take too long and cost too much.

    Chances are the fish is rotten.
     
    ukxmrv, lycaena, leela and 4 others like this.
  13. Valentijn

    Valentijn Senior Member

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    Maybe they can humbly ask a secretary to open the Excel sheet for them? :rofl:
     
    ukxmrv, lycaena, leela and 4 others like this.
  14. TiredSam

    TiredSam The wise nematode hibernates

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    That I can believe.
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    And did you notice the bit before the bit you quoted that said
    Then they talk about someone trying to find it.

    o_O
     
    barbc56, leela and worldbackwards like this.
  16. SOC

    SOC Senior Member

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    Then give us the raw data you do have and we'll find it ourselves if you're such mental midgets you can't cope with your own data.
     
    ukxmrv, leela, Anna Wood and 2 others like this.
  17. user9876

    user9876 Senior Member

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    I think that was when the mean and standard deviation was required obviously a difficult calculation!
     
    Anna Wood likes this.
  18. lansbergen

    lansbergen Senior Member

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    5 million was not enough to make a datasheet and give it a proper name.
     
    MeSci, Valentijn and ukxmrv like this.
  19. Sidereal

    Sidereal Senior Member

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    18 hours lol try 18 seconds. Outrageous lies.
     
  20. PDXhausted

    PDXhausted Senior Member

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    I wonder what would happen if someone put in a request for the data along with a note that said something to the effect of "we are psych researchers and have found this trial and results really groundbreaking and interesting, and would like to attempt to replicate these results to give them more weight" (or however a researcher would say it). Do you think they'd be labeled vexatious too? Do you think they'd release the data easily?
     

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