PACE data request FS50600710 (not the appeal case)

[NL93]

Guys, stop it. Poor prof. White is getting annoyed and frustrated;

“These serial requests have caused my colleagues [who are
external to QMUL] and me annoyance and frustration, and in my opinion they are clearly part of a campaign to discredit the trial, and are not in the public interest.”

Just do CBT and GET and cure yourselfs. Stop harassing this poor man who found such a great evidende based treatment for you.

In all seriousness, this whole situation is so ridiculous on so many levels i don't even know where to begin.

 

[msf]

I think this shows how messed up the British system is, can you imagine this happening in the USA? It´s probably easier to get information on detainees from the CIA than it is to get PACE trial data from the medical establishment.

 

[msf]

´QMUL argued that the complainant’s request should be viewed in the
context of a campaign of opposition to the PACE trial, its investigators
and its findings.´

Brilliant argument! So they would only release information in the context of a campaign of support for the PACE trial - yep, that´s real science!

 

[acouchy]

Agree but someone here (cannot remember who) said we are not "patients" as we don't get to see any doctors who help or treatments or go to hospital for specialists to see.

I have also many times in the past referred to myself as a "patient"- I know now erroneously.

I am going to refer to myself as "AN ME SUFFERER" which is the most appropriate term and we all should use this I feel.

Yup. Difficult to say "patient" when I do not have a doctor. I have been using "unwilling ME/CFS participant".

 

[Gijs]

Let the data speak for itselves. If the data of the pace trial is as solid as White says: why not release them? Because he and his colleagues are hypocrites.

 

[acouchy]

Question... When was the comment about more FOI requests made on here?

 

[Dolphin]

Graham was looking for the data for this graph:

Note that CBT and graded exercise therapy had numerically the worst scores at 52 weeks, the end of the trial

 

[NL93]

Note that CBT and graded exercise therapy had numerically the worst scores at 52 weeks, the end of the trial

I noticed that. Kinda funny that even their own data shows the pacing group did best. Patients have been telling for decades that pacing works best. And somehow they still conclude GET and CBT work best. Just amazing

 

[msf]

Reading the PR comments they quoted as evidence of a campaign against them makes me think that they would have been better off on a reality show like Real Housewives of Wherever, fervently discussing why they think Whoever doesn´t like them, rather than in the scientific world, where an ego that a eight-year old would think was a bit delicate (they keep calling me names!) is somewhat of a disadvantage.

I really hope this makes their next list of quotes.

 

[A.B.]

Note that CBT and graded exercise therapy had numerically the worst scores at 52 weeks, the end of the trial

More importantly, they showed the least improvement compared to the their baseline. Even less than standard medical care alone, which all groups received. The addition of CBT and GET didn't really have an effect, but there was a trend towards worse outcomes when they were added. The most improvement relative to baseline was seen in the adaptive pacing group (which isn't true pacing but that's another story).

The fitness graph was constructed with data from a step test which is described as reliable measure of cardiorespiratory fitness in the literature.

 

[Jonathan Edwards]

I need to look at this in more detail but I think I should probably respond, or assist in a response. I think there is some sort of appeal allowed. The material produced by QMUL is a disgrace to science. Criticism of science is essential to the scientific method and if the science is really bad, as here, and critics are being fobbed off, they are entirely entitled to start showing their personal annoyance (just like QMUL).

There was a programme on the BBC the day before yesterday about the 'replication crisis' in psychology. The subtext was that psychology was coming to realise that much of its evidence is worthless. The defence is that that applies to other science a bit as well, and it does, but I am afraid it is not a defence. It seems to me that the exposure of the poor quality of PACE is symptomatic of a much wider realisation that psychology has got away with substandard science for too long. I do not know that much about other psychology research but if PACE is representative they really do have a problem.

Presumably nobody would have complained if a bunch of homeopaths had claimed some treatment worked and there was an outcry from the establishment, full of ridicule and scorn. PACE is just the same, so why is it protected?

I am travelling at present and a bit distracted but if I know who to write to maybe I can put it to them straight, as a director of PR, that the material from QMUL betrays a complete lack of understanding of why there is criticism and indeed a complete misunderstanding of how science should work. (Not to mention a remarkable lack of understanding of human nature on the part of a group of psychologists!)

 

[Mrs Sowester]

Yup. Difficult to say "patient" when I do not have a doctor. I have been using "unwilling ME/CFS participant".

Unwilling ME/CFS participant! That's brilliant!

 

[TiredSam]

Agree but someone here (cannot remember who) said we are not "patients" as we don't get to see any doctors who help or treatments or go to hospital for specialists to see.

I have also many times in the past referred to myself as a "patient"- I know now erroneously.

I am going to refer to myself as "AN ME SUFFERER" which is the most appropriate term and we all should use this I feel.

Yes please feel free to use my quote, remember to put a penny in the box

What I don't understand is why comments on PR are relevant. Why on earth should the applicant be held responsible, or his case disadvantaged, because of comments on a public forum over which he has no control? Even if there was an organised campaign against the PACE authors, it shouldn't prevent every request from being allowed. First QMUL should prove whether Graham is a part of the campaign, and then they should answer the question "so what?" There are plenty of legitimate campaigns around, where some people express themselves forcefully. So what?

How the commissioner can allow this rubbish argument is beyond me.

 

[TiredSam]

“These serial requests have caused my colleagues [who are
external to QMUL] and me annoyance and frustration, and in my opinion they are clearly part of a campaign to discredit the trial, and are not in the public interest.”

Discrediting the trial is in the public interest.

 

[Mrs Sowester]

I really hope this makes their next list of quotes.

We could have a competition and award gold stars

 

[Scarecrow]

35. QMUL explained that its strategic aims were to create and disseminate
knowledge and that it believed that its staff had a right to be able to
carry out the research on which they decided and their peers review. If
staff were required to carry out unplanned analysis on data at the whim
of any external party, it took those staff away from their core duties and
impacted on the primary purpose of the institution. QMUL did not
believe that it was the intention of the legislation for this to occur to
such an extent.

How ironic. The only reason this is happening to them is precisely because they carried out unplanned analysis on the data (rather than the analysis they said they would).

 

[user9876]

How ironic. The only reason this is happening to them is precisely because they carried out unplanned analysis on the data (rather than the analysis they said they would).

In this case they weren't being asked to carry out an unplanned analysis just give the results in a numerical form for an analysis they have done and reported.

 

[Yogi]

I need to look at this in more detail but I think I should probably respond, or assist in a response. I think there is some sort of appeal allowed. The material produced by QMUL is a disgrace to science. Criticism of science is essential to the scientific method and if the science is really bad, as here, and critics are being fobbed off, they are entirely entitled to start showing their personal annoyance (just like QMUL).

There was a programme on the BBC the day before yesterday about the 'replication crisis' in psychology. The subtext was that psychology was coming to realise that much of its evidence is worthless. The defence is that that applies to other science a bit as well, and it does, but I am afraid it is not a defence. It seems to me that the exposure of the poor quality of PACE is symptomatic of a much wider realisation that psychology has got away with substandard science for too long. I do not know that much about other psychology research but if PACE is representative they really do have a problem.

Presumably nobody would have complained if a bunch of homeopaths had claimed some treatment worked and there was an outcry from the establishment, full of ridicule and scorn. PACE is just the same, so why is it protected?

I am travelling at present and a bit distracted but if I know who to write to maybe I can put it to them straight, as a director of PR, that the material from QMUL betrays a complete lack of understanding of why there is criticism and indeed a complete misunderstanding of how science should work. (Not to mention a remarkable lack of understanding of human nature on the part of a group of psychologists!)

Thank you for your input Dr @Jonathan Edwards. I so agree this is a complete disgrace to science even for their low standards.

My understanding is the original requester would have to appeal within 28 days but you could provide an input to this?

I definitely think this one should be appealed as it is a absurd situation.

118.Either party has the right to appeal against this decision notice to the First-tier Tribunal (Information Rights). Information about the appeals process may be obtained from: First-tier Tribunal (Information Rights) GRC & GRP Tribunals, PO Box 9300, LEICESTER, LE1 8DJ Tel: 0300 1234504 Fax: 0870 739 5836 Email: GRC@hmcts.gsi.gov.uk Website: www.justice.gov.uk/tribunals/general-regulatorychamber
119.If you wish to appeal against a decision notice, you can obtain information on how to appeal along with the relevant forms from the Information Tribunal website.
120.Any Notice of Appeal should be served on the Tribunal within 28 (calendar) days of the date on which this decision notice is sent.

 

[TiredSam]

If staff were required to carry out unplanned analysis on data

Which they aren't. They are required to simply cough up the data, real scientists will do the analysis after that. They've had their go, no-one wants them to analyse it again, please.

 

[Scarecrow]

In this case they weren't being asked to carry out an unplanned analysis just give the results in a numerical form for an analysis they have done and reported.

True but my point was that - probably - the only reason they are getting FOI requests at all is because they failed to do the analysis they laid out in their own protocol.