What it takes for Queen Mary to declare a request for scientific data “vexatious”

2humptyWe need Lewis Carroll’s Humpty Dumpty to understand

It is a matter of public record  that Anna Sheridan made this Freedom of Information request to Queen Mary, University of London:

From: Anna Sheridan

1 November 2015

Dear Queen Mary, University of London,

I would like to request, for each of the 4 treatment arms of the
PACE trial, the 6 min walking test data

a) before treatment and
b) (where available) at follow-up (52 weeks)

I appreciate that my previous request was denied due to it being
deemed to require the creation of new data. This request has been
carefully chosen to avoid that problem, consisting of a request to
supply a list of numbers for each of the 4 treatment arms of the
trial.

Yours faithfully,

Anna Sheridan

This is a polite request. It is eminently reasonable because such behavioural data are crucial to the evaluation of what is essentially a cognitive behavioural model of chronic fatigue syndrome.

The data are clearly available in a form that could readily be released. How do we know? References are made to the specific data in the mediation paper. That paper refers to the data, but does not present analyses in sufficient detail to allow independent evaluation. The paper that depends so much on accepting investigators’ claims without supporting evidence. I don’t understand how the paper made it through competent independent peer-reviewed in its publish form. But that’s another story.

Queen Mary, University of London replied to Anna Sheridan’s request:

From: QM FOI Enquiries

Queen Mary, University of London
2 November 2015

We acknowledge receipt of your request and will respond as soon as we can.

And then

From: QM FOI Enquiries
Queen Mary, University of London

27 November 2015

FOI 2015/F266

Dear Dr. Sheridan
Thank you for your email.

I am afraid that we deem your request to be vexatious and therefore refuse
it under s.14(1) of the Freedom of Information Act 2000.

Please accept this as a refusal notice.

If you are dissatisfied then you have the right to appeal to the
Information Commissioner. Please see [1]www.ico.org.uk for details.

Yours sincerely

Paul Smallcombe

Records & Information Compliance Manager

References

Visible links
1. http://www.ico.org.uk/

Anna Sheridan’s reply

From: Anna Sheridan

27 November 2015

Dear Queen Mary, University of London,
Please pass this on to the person who conducts Freedom of
Information reviews.

I am writing to request an internal review of Queen Mary,
University of London’s handling of my FOI request ‘Raw 6mwt Data
after treatment’.

I am particularly surprised that you see my request as vexatious –
it is certainly not my intention. Rather, this is a genuine attempt
to find a way to get a better understanding of the 6mwt PACE data
in a way that is acceptable to QMUL. As I stated in my request, I
acknowledge that a previous request of mine was considered to
require the creation of new data. This present request asks only
for a list of numbers for each of the 4 treatment arms of the trial
(which QMUL have acknowledged they hold), and was carefully defined
in the hope that it would be not be too time-consuming or onerous
for QMUL to fulfill.

As I’ve stated before, I have a genuine interest in this data, as
both a scientist and as a patient.

I would be grateful if you could reconsider this request, and
provide reasons why you think the request is considered vexatious.

A full history of my FOI request and all correspondence is
available on the Internet at this address:
https://www.whatdotheyknow.com/request/r…

Yours faithfully,

Anna Sheridan

Link to this

Which was met by Queen Mary University of London with quick rejection:

Dear Dr. Sheridan

We have carried out an internal review recently along similar lines and
decline to carry out another on this occasion.

If you wish to appeal further then you can find information on how to do
this on the website of the Information Commissioner’s Office at
[1]www.ico.org.uk
Yours sincerely

Paul Smallcombe
Queen Mary University of London

References

Visible links
1. http://www.ico.org.uk/

Things you or anyone else could do

Vexatious_colour-300x291Before I started looking into Queen Mary University’s refusal to release data, I had no idea what “vexatious” would mean in such contexts. Trying to conjure something up, I envisioned a rowdy torch-carrying crowd or maybe a rude boy. But now I think we need to think in terms of Lewis Carroll’s Humpty Dumpty.

1Humpty_Dumpty

“Vexatious” means whatever Queen Mary University wants it to mean. It simply serves as a post-hoc justification for rigidity that already existed, no matter who approaches them.

And why would Queen Mary University not want to release the data? It is common in such situations for investigators to refuse to release their data, because they have something to hide. Without such data, the scientific community is left having to trust the investigators’ dismissal of credible criticism of their interpretation of the results.

In contrast, if the data were released, the scientific community would have the opportunity to examine relationships among the self-report variables that the investigators designated post-hoc as primary outcomes, in relation to behavioral data. Maybe the investigators could vindicate themselves.

The repeated refusal of Queen Mary University to release these and other data should move the scientific community from its usual open-minded skepticism to dismissal of these claims. If Queen Mary University and the PACE investigators do not produce the data, the claims are not believable.

As an American outsider, I find it quite curious that the UK scientific community is so patiently accepting of the stonewalling by Queen Mary University and the PACE investigators. I think it reflects the inbreeding of the academia of a small island and a stifling politeness that precludes the vigorous criticism needed for assuring quality science.

I have my own Freedom of Information Act request submitted and under review.

I said

From: jcoynester@gmail.com [mailto:jcoynester@gmail.com] On Behalf Of James Coyne
Sent: 13 November 2015 18:14
To: McCrone, Paul
Cc: PLoS ONE
Subject: Request for data

Dear Professor McCrone
I have read with interest your 2012 article in PLOS One, “Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome…”

I am interested in reproducing your empirical results, as well as conducting some additional exploratory sensitivity analyses.

Accordingly, and consistent with PLOS journals’ data sharing policies, I ask you to kindly provide me with a copy of the dataset in order to allow me to verify the substantive claims of your article through reanalysis.  I can read files in SPSS, XLS[x], or any reasonable ASCII format.

Thank you in advance. I look forward to your response.

I was told

Dear Professor Coyne,

My colleagues have passed on your request for information relating to 2012 article below. We will treat your request for this information as a request under the Freedom of information Act 2000. It was received by the university on 13th November 2015. We will endeavour to respond within the statutory 20 day time frame.

Kind Regards

Caroline Hill

Information Compliance Coordinator

Information Management and Compliance
Governance and Legal Services
King’s College London
Room 2.32
Franklin-Wilkins Building
Stamford Street
London SE1 9NH

T: 0207 848 7816

E: legal-compliance@kcl.ac.uk

But this time it is a different matter. I’m asking for data that must be made available as a condition for publishing in PLOS One. If my request is not granted, I will publicly seek to have the article retracted. Is that “vexatious”?

Make my day, Queen Mary University and PACE investigators.

Note: I am an Academic Editor at PLOS One. However, these opinions are entirely my own and they are not based on a consultation with other editors or the journal’s administration. Presumably my request for a retraction would be processed like anyone else’s request, with an appropriate due process and set of checks and balances that protect the integrity of the journal and the rights of all parties involved, including the larger scientific community.

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29 thoughts on “What it takes for Queen Mary to declare a request for scientific data “vexatious”

  1. I had a good look through the rule on what classifies a request as vexatious. One possible ground is persistent requests. On this count, Anna Sheridan’s FOI request follows some 14 months after her previous one. In contrast, the example cited under the ICOs interpretation, it talks about someone making 25 FOI requests in matter of days. So we can safely through that out.

    It is considered ‘good practice’ for QMUL to offer an explanation as to why they consider a request vexatious but it isn’t required of them.

    There is seemingly no penalty for QMUL to decide every request is vexatious and force the requester to make an appeal via the ICO (who will in all likelyhood, uphold Anna Sheridan’s request).

    In fairness to QMUL, they may be under the advice of interested parties and have drank the kool aid regarding an imaginary hoard of ‘ME Militants’. Of course the cherry picked quotes they use from the Phoenix Rising community combined with their regurgitated articles on death threats (which any reasonable ME advocate would rightly condemn, and thus have nothing to do with the community as a whole) make for compelling propaganda I’m sure.

    Liked by 2 people

    • “inbreeding of the academia of a small island and a stifling politeness that precludes the vigorous criticism needed for assuring quality science”

      I think you need to drop the racism. I notice you make racist comments about my country and people on your blogs and on YouTube. It is not appreciated and I’d say will do little to help your (otherwise excellent) arguments. I say this as an ME sufferer of some two decades and I am extremely grateful for the scrutiny by eminent scientists and experts now being given to the fraudulent PACE trial. You make some very pertinent points about the evils of disparaging whole groups of people via hate-filled speech dressed up as casual, culturally acceptable discourse. But then you commit the same offence with your casually racist (and ignorant) comments about Britain, British people and, in particularly, English people.

      Keep up the good work on criticizing PACE, we are all following this with bated breath as a potential game-changer but, like I say, you might want to consider dropping the racism.

      Like

      • I’m sorry that you interpret my comments about the inbreeding of academia as racist. It’s a common observation about many areas of research that the investigation has become inbred, with people from certain institutions citing others’ work based on whether they went to the same institution. I think most people would agree that the type D personality literature which I brought to a halt was one such literature. But the problem is even worse in the UK, not only are prestigious academics from a limited set of institutions, the opinion leaders and the media are from the same institutions. There’s a very unhealthy interplay between academia and the media. Where the media should filter and find independent alternatives to the self-promotion of academics, it has a dysfunctional connection with the very same academics. The media coverage of the PACE trial is to an outsider a shocking example of this and base for a reform.

        I hope that my providing this context satisfactorily clarifies what I intend to say and relates it towhat others are saying about about academia in general.

        Liked by 3 people

  2. Thank you for another post that I hope is opening the eyes of the wider scientific community to what is going on with PACE.

    You write: “As an American outsider, I find it quite curious that the UK scientific community is so patiently accepting of the stonewalling by Queen Mary University and the PACE investigators. I think it reflects the inbreeding of the academia of a small island and a stifling politeness that precludes the vigorous criticism needed for assuring quality science.”

    As a UK resident I’m ashamed of the behaviour of our academics. I’m appalled that a UK university would back up the PACE authors’ withholding of data from a trial conducted with £5m of UK taxpayers’ money.

    How can this seem right to them?

    I see that the 20 days since you submitted your own data request is up tomorrow (unless that’s 20 working days). Astonishing that they should treat this request (made under the PLOS agreement) as an FOI request at all.

    Liked by 3 people

  3. I believe Anna has been trying to get this data for sometime. Looking at the what do they know website
    https://www.whatdotheyknow.com/user/anna_sheridan_2

    There are four requests for much the same data asked in different ways to try to make it easy for QMUL to provide the data and answer a simple question around the correlation between the 6 min walking test and more subjective questionnaire scores.

    In one request https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered#incoming-454571 she asks for the 6mwt scores for all those deemed to have recovered along with means and standard deviations for each treatment group.

    But QMUL say that this simple and basic calculation would take them more that 18 hours and therefore cannot be done. I cannot imaging how bad a data schema they must have for it to take that long. If they cannot compute these simple values easily it would suggest that there are serious issues with the way they are organizing and processing data and none of the results they produce can be trusted (in that complex data formats are likely to introduce errors).

    Liked by 2 people

  4. A minor comment, but like many people with ME, I struggle to read large amounts of text online. Would it be possible for you to provide a link to a printable version of your post, if it’s not too much trouble?

    Thank you!

    Like

  5. It’s time that people do something about this, in particular, scientists and other medical professionals, politicians and others with a platform/voice. Those sick with ME/CFS are massively affected by poor research into their disease but the burden to question poor science and poor behaviour mustn’t be left to the patients, up against a large institution evidently willing to say and do anything they can to keep data hidden even though it is unscientific and unethical. This really matters because PACE has been influential – it is right that it should stand up to the same scientific standards as everything else.

    Thank you Dr Coyne, and the others who have stepped in. I hope others will do the right thing, especially as this isn’t just an ME/CFS issue, but a wider scientific and social one.

    Liked by 1 person

    • I agree that the burden placed on already very ill people to challenge the flawed science is intolerable. And, irony of irony, when they do use their scarce and precious energy to try to point out the inaccuracies and misinformation, they are deemed “vexatious” (what an irritating, Dickensian word !). So the wonderful help and advocacy by Dr Coyne, David Tuller, and all those associates who have recently jumped into the fray is very welcome. Other heroes such as the excellent Prof. Malcolm Hooper have tried for years to expose the situation, but in this country have been largely ignored by those who have the power to change things.
      Wouldn’t it be great to see all those news outlets which recently reported hysterically and unquestioningly about the PACE trial follow-up, use their energies more constructively to report on QMUL’s refusal to release requested data – action which can surely only prompt the question – what have they got to hide?

      Like

  6. Could the FOI “vexatious” jargon be related to the legal concept of “vexatious litigation”? “A legal action or proceeding initiated maliciously and without Probable Cause by an individual who is not acting in Good Faith for the purpose of annoying or embarrassing an opponent.”
    Wikipedia gives many examples of vexatious litigants who include:

    Roy L. Pearson, Jr., who filed a civil case demanding US$67 million in 2005 following a dispute with a dry cleaning company over a lost pair of trousers, and Jonathan Lee Riches, former prisoner who filed over 2,600 lawsuits over the course of six years.

    In contrast, Anna Sheridan and others have filed requests for small amounts of anonymised trial data that are personally, professionally and scientifically important to them. The repeated blank refusals incline me to believe that it is QMUL that is behaving vexatiously in this instance and not Dr Sheridan.

    Liked by 2 people

    • Based on their actions it appears that their definition of vexatious is tied to having an independent opinion. I’m not aware of a FOI request for PACE trial data that has been successful.

      Liked by 1 person

  7. I believe that the confusion is caused by merging the two terms “medic” and “clinician” to produce the term “magician”, who clearly is never expected to reveal the mechanisms behind the illusions.

    Liked by 2 people

    • I had thought her request perspicatious
      But now it appears that’s fallacious
      From QMUL
      Their own personnel
      Have ruled that it’s merely vexatious

      Like

  8. My view is simplistic as a patient with severe Chronic fatigue Syndrome /Myalgic Encephalitis I have tried all the treatments used by the PACE trial. My own experience was that Graduated Exercise Therapy caused a relapse. Adaptive Pacing Therapy had minimal benefit. Cognitive Behavioural Therapy had no effect. The focus of the PACE investigators is based on the premise that CFSME is a psychological condition and can be cured by convincing the patient that they are experiencing false illness beliefs. This is a flawed argument as research suggests it is a Neurological immunological disease. The World Health Organisations classification of CFSME is ICD 93.3. A Neurological disease. The failure to release data suggests that this data has been misused and misinterpreted. The Information Commissioner Office ruled in favour of releasing the data and this has been supported by leading academics. The trial was publicly funded and therefore all aspects of it should be publicly available including the data. The release of the data is now vital in order to prove or disprove the findings of the PACE report. This is key as the findings are been used to form the basis of treatment offered by the NHS. The data should be openly scrutinised by leading scientists in the area. Then as a result the findings can be properly subjected to independent peer review and as a result proved valid or not. Finally irrespective of the PACE data it is best practice for all data in medical trials to be publicly available for research purposes. I would therefore expect that leading UK universities such as QMUL and Oxford University would be leading the way in this area.

    Like

  9. Well done James for your FOI request and many thanks for bringing your own experience and style to bear on the lamentable PACE trial and all that comes with it. I think this is your best blog yet and that Humpty speaks true. It seems such a unbalanced amoung of power for a university and smack of researchers to have in this age of enlightenment. But, as the saying goes, the truth will out.

    Like

  10. Thank you for being able to see past the stigma attached to ME/CFS and thank you for fighting against bad science. I have never cared what the cause of this illness is… all I want is the truth so appropriate treatments can be found. Keep up the good work.

    Like

  11. Thanks so much James for this blog and for your willingness to seek the truth on this issue in spite of the problems it might cause you in the science community.

    Sticking up for people with a stigmatised disease can lead to stigma for the person doing the calling out, but you are willing to see past this stigma and do what’s right for diseased (and underserved) patients – a true hero.

    I believe it will take American grit and steel to overturn old-fashioned British pomposity!!

    Like

  12. From the Information Commissioners Office ‘Dealing with Vexatious Requests’

    Overview

     Under section 14(1) of the Act, public authorities do not have to
    comply with vexatious requests. There is no public interest test.

     Section 14(1) may be used in a variety of circumstances where a
    request, or its impact on a public authority, cannot be justified.
    Whilst public authorities should think carefully before refusing a
    request as vexatious they should not regard section 14(1) as
    something which is only to be applied in the most extreme of
    circumstances.

     Section 14(1) can only be applied to the request itself and not
    the individual who submitted it.

     Sometimes a request may be so patently unreasonable or
    objectionable that it will obviously be vexatious.

     In cases where the issue is not clear-cut, the key question to ask
    is whether the request is likely to cause a disproportionate or
    unjustified level of disruption, irritation or distress.

     This will usually be a matter of objectively judging the evidence
    of the impact on the authority and weighing this against any
    evidence about the purpose and value of the request.

     The public authority may also take into account the context and
    history of the request, where this is relevant.

     Although not appropriate in every case, it may be worth
    considering whether a more conciliatory approach could help
    before refusing a request as vexatious.

     A public authority must still issue a refusal notice unless it has
    already given the same individual a refusal notice for a previous
    vexatious request, and it would be unreasonable to issue another
    one.

     If the cost of compliance is the only or main issue, we
    recommend that the authority should consider first whether
    section 12 applies (there is no obligation to comply where the
    cost of finding and retrieving the information exceeds the
    appropriate limit).

    https://ico.org.uk/media/for-organisations/documents/1198/dealing-with-vexatious-requests.pdf

    Like

  13. So QMUL recieved multiple requests (by multiple people / groups) for access to (a variety of) raw research data, all connected to various publications of the PACE trials. I understand that all of these requests have until now been refused, and that QMUL now holds the opinion that such a request is vexatious. I am baffled and I totally fail to understand how this point of view of QMUL is in line with “QMUL affirms its commitment to the general principle of Open Access to the outputs of research, and data underlying these (…) and it will formulate and promote appropriate policies and ensure the means for implementation” ( http://www.qmul.ac.uk/strategy/researchstrategy/policy/index.html ).
    .
    .
    Lets start with a global approach. The Singapore Statement of July 2010 ( http://www.singaporestatement.org/downloads/singpore%20statement_A4size.pdf ) has 4 principles. These are are elaborated into 14 responsibilities.
    .
    4. “Research Records: Researchers should keep clear, accurate records of all research in ways that will allow verification and replication of their work by others.” So the refusal of QMUL implies that others are unable to verify research which was published on behalf of QMUL (i.e. the papers with results on the PACE trials).
    .
    5. “Research Findings: Researchers should share data and findings openly and promptly, as soon as they have had an opportunity to establish priority and ownership claims.” It seems to me that publishing a paper in a peer-reviewed journal implies that ownership and/or priority has been claimed. It seems therefore that QMUL is violating Responsibility #5 when they refuse to share the raw data of the published papers on the PACE Trials with others.
    .
    .
    Lets focus on Europe and on “The European Code of Conduct for Research Integrity of 2011 (
    http://www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegrity.pdf ). A great document!
    .
    page 10: “2.2.3 Integrity in science and scholarship: principles”
    * “Objectivity: interpretations and conclusions must be founded on facts and data capable of proof and secondary review; there should be transparency in the collection, analysis and interpretation of data, and verifiability of the scientific reasoning.”
    * “Open communication, in discussing the work with other scientists, in contributing to public knowledge through publication of the findings, in honest communication to the general public. This openness presupposes a proper storage and availability of data, and accessibility for interested colleagues.”
    I fail to understand how the current policy of QMUL et al., in regard to their refusal to give others access to the raw research data is in line with these principles of the ESF-ALLEA CoC.
    .
    .
    Let uss now focus on Germany and on http://www.dfg.de/download/pdf/dfg_im_profil/reden_stellungnahmen/download/empfehlung_wiss_praxis_1310.pdf The first half of this document is in German, the second half is a full translation in English of the entire text.
    All German universities and all research projects funded by DFG (public money) must always work according to these guidelines.
    .
    Page 74: “Recommendation 7: Safeguarding and Storing of Primary Data. Primary data as the basis for publications shall be securely stored for ten years in a durable form in the institution of their origin.”
    .
    * “Experience indicates that laboratories of high quality are able to comply comfortably with the practice of storing a duplicate of the complete data set on which a publication is based, together with the publication manuscript and the relevant correspondence.”
    * “Every research institute applying professional standards in its work has a clear policy for retaining research records and for the storage of primary data and data carriers and access to the original data and data carriers.”
    * “Being able to refer to the original records is a necessary precaution for any group if only for reasons of working efficiency. It becomes even more important when published results are challenged by others.”

    It seems to me that many people / groups (etc.) are challenging the published results of the PACE trials. I therefore once again fail to understand why QMUL et al. do not allow these others to verify the findings in the various PACE Trial papers. Once again, I totally fail to understand why QMUL claims that these requests are “vexatious”. I propose that QMUL will deposit ASAP all primary research data of all papers on the PACE Trial on a public part of their website.

    Liked by 1 person

  14. So QMUL recieved multiple requests (by multiple people / groups) for access to (a variety of) raw research data, all connected to various publications of the PACE trials. I understand that until now all requests have been refused. I understand that QMUL is now holding the opinion that such a request is vexatious.
    .
    So at the moment no raw research data are available to others, for example to verify claims / statements (etc.) in various of the PACE trial papers with QMUL as (one of the) affiliations. I fail to understand how this point of view of QMUL is in line with “QMUL affirms its commitment to the general principle of Open Access to the outputs of research, and data underlying these (…) and it will formulate and promote appropriate policies and ensure the means for implementation” ( http://www.qmul.ac.uk/strategy/researchstrategy/policy/index.html ).
    .
    The Singapore Statement of July 2010 ( http://www.singaporestatement.org/downloads/singpore%20statement_A4size.pdf ) is a set of global guidelines with 4 principles. These 4 principles are elaborated into 14 responsibilities.
    .
    Responsibility 4. “Research Records. Researchers should keep clear, accurate records of all research in ways that will allow verification and replication of their work by others.”
    So the refusal of QMUL implies that others are unable to verify research which was published on behalf of QMUL (i.e. the papers with results on the PACE trials).
    .
    Responsibility 5. “Research Findings. Researchers should share data and findings openly and promptly, as soon as they have had an opportunity to establish priority and ownership claims.” It seems to me that publishing a paper in a peer-reviewed journal implies that the ownership and/or priority has been claimed. It seems therefore that the refusal of QMUL to share with others the primary research data of the published papers on the PACE Trials is not in line with Responsibility #5 of the Singapore Statement.
    .
    Let us now focus on Europe and on “The European Code of Conduct for Research Integrity of 2011 (
    http://www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegrity.pdf ).
    .
    The ESF-ALLEA CoC is a great document and it is in many aspects more or less similar to the Singapore Statement. See for example page 10:
    “2.2.3 Integrity in science and scholarship: principles.”
    * “Objectivity. Interpretations and conclusions must be founded on facts and data capable of proof and secondary review; there should be transparency in the collection, analysis and interpretation of data, and verifiability of the scientific reasoning.”
    * “Open communication, in discussing the work with other scientists, in contributing to public knowledge through publication of the findings, in honest communication to the general public. This openness presupposes a proper storage and availability of data, and accessibility for interested colleagues.”
    I fail to understand how the current policy of QMUL et al., in regard to their refusal to give others access to the raw research data is in line with these principles of the ESF-ALLEA CoC.
    .
    Let us now focus on Germany and on http://www.dfg.de/download/pdf/dfg_im_profil/reden_stellungnahmen/download/empfehlung_wiss_praxis_1310.pdf The first half of is in German, the second half is an English version of the entire text. All German universities and researchers working on research projects funded by DFG (public money) must always work according to these guidelines of DFG. See for example page 74:
    .
    “Recommendation 7: Safeguarding and storing of primary data. Primary data as the basis for publications shall be securely stored for ten years in a durable form in the institution of their origin.”

    * “Experience indicates that laboratories of high quality are able to comply comfortably with the practice of storing a duplicate of the complete data set on which a publication is based, together with the publication manuscript and the relevant correspondence.”
    * “Every research institute applying professional standards in its work has a clear policy for retaining research records and for the storage of primary data and data carriers and access to the original data and data carriers.”
    * “Being able to refer to the original records is a necessary precaution for any group if only for reasons of working efficiency. It becomes even more important when published results are challenged by others.”
    .
    It seems to me that many people are challenging the published results of the PACE trials.
    .
    I once again fail to understand why QMUL et al. do not allow others to verify the findings in the various PACE trial papers. I fail to understand why QMUL claims that such (multiple) requests to get acccess to the raw research data can be qualified as “vexatious”.
    .
    I propose that QMUL will deposit ASAP all primary research data of all papers on the PACE Trial on a public part of their website.

    Liked by 1 person

  15. “I’m sorry that you interpret my comments about the inbreeding of academia as racist”

    Nope, your comments about Britain and British people are definitely racist, ignorant and ill-informed. It’s not an “interpretation”, I know casual racism when I see it! You obviously have not travelled widely in our diverse and wonderful country. We have lots of Americans (and people of every other nationality) working in academia, the media, the civil service and other sectors. Some of the worst institutional abuses against people with ME are currently taking place in Denmark, Holland and Germany, yet I notice you do not use the same kind of language regarding other nations and nationalities. And, lest we forget, the worldwide ME patient community has the United States to thank for the invention of “CFS”. The PACE trial investigators have been able to do what they have done on the back of this medical fiction.

    I merely suggested you drop the casual racism against Britain and British people (in the public forum at least) because it could undermine your otherwise excellent arguments, and you are committing the same offences you complain of! And, even though I suspect you don’t like me because I am British, English and proud of it, I still like you for sticking up for people with ME. You see, we are a very tolerant nation!

    Like

  16. Dear ‘Lady Boadicea’,

    Real scientists are always willing to debate about their findings with all opponents and the same is the case with all European universities who are working according to for example the European Code of Conduct of Research Integrity of ESF/ALLEA http://www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegrity.pdf

    This all implies that such universities will organize a public debate with all parties in case there are groups of people who are challenging their findings. This all implies as well that these universities will force their employees to release all the primary research data of the papers which have been published with a university affilation.

    See for example http://www.theatlantic.com/science/archive/2015/12/rival-scientists-kill-recent-discovery-about-invincible-animals/418755/ for an excellent story how real scientists behave when they get confronted by others who are challenging their findings. A UK scientist wrote that this could be regarded as “another story of victory for Open Data”. I fully agree with this UK scientist.

    I am still astonished / speachless (etc.) that a UK university has decided that a request to get access to the raw research data of published papers is regarded as “vexatious”. I am not aware that the other affilations (quite a few other UK universities) have forced QMUL to quit this opinion, and to force QMUL to release all the raw research data. I therefore agree with the opinion of professor Coyne that such a behaviour can be regarded as ‘inbreeding’.

    So there is only one way out for QMUL and others to rebut the claim of professor Coyne: release the raw research data, ASAP, and all of them, and for example at a public part of the website of any of the affilated universities, and organize a public scientific debate with all relevant parties.

    Liked by 1 person

    • Yep, I agree with all your criticisms regarding QMUL, PACE, proper science, etc, that’s not what I was commenting on. Was not excusing their conduct, they’re totally inexcusable!

      Liked by 1 person

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