Queen Mary's appeal ICO decision on PACE data

[Hip]

It is so extremely unlikely as to be next to impossible that the university's legal department and consequently it's administration doesn't know about this.

I don't have any knowledge of how a university processes FOI requests. No doubt there are administrators who handle these requests, but that does not mean the head of the university is filled in.

QMUL is trying to cover its behind, not just that of the researchers.

If you think about it, what you are saying does not really ring true.

You have to have a high degree of expertise and involvement in the world of ME/CFS to know that the PACE trial is hogwash. For anyone else, including most of the medical profession, the PACE studies are taken at face value, and what its authors say about recovery from CFS by GET/CBT being possible is assumed to be true.

Thus the Principal and other Queen Mary staff are not going to know that PACE is hogwash, and that publishing the PACE data may open a whole can of worms. Peter White will certainly not have quietly sneaked up to the Principal or university legal department and said: "Pssst, Principal, listen, the whole of my PACE study is based on bullshit, so please make sure that you refuse all FOI requests, otherwise myself and the university will be in the firing line".

The Principal and university legal team will thus most likely have no understanding that PACE is hogwash, so would have no reason to want to block an FOI request.

So I don't go for this notion of a high-level cover-up at Queen Mary College.

 

[Invisible Woman]

I think that there is far more to this than meets the eye and it goes beyond QMUL. Remember there are still documents about ME and government policies regarding ME sealed (under official secrets act I think) & they will remain sealed until 2071. There are some very powerful people with vested interests here and they very much want to peddle the BPS model.

Here's an old document (2009) that discusses them:
http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

 

[Hip]

Remember there are still documents about ME and government policies regarding ME sealed (under official secrets act I think) & they will remain sealed until 2071.

My understanding is that those secret files on ME/CFS were released a few years ago. They can be dowloaded from the link at the bottom of this page.

There are some very powerful people with vested interests here and they very much want to peddle the BPS model.

More specifically, it is the disability insurance industry who would prefer to have CFS classified as a disease with psychological rather than physical (physiological) causes. This is because disability insurance policies provide lifetime disability payouts for disabling diseases with physical causes, but not those with psychological causes. For these insurance companies, a lot is at stake financially, and they can save themselves a lot of money if they wangle the situation to get ME/CFS classified as have a psychological cause.

 

[alex3619]

My understanding is that those secret files on ME/CFS were released a few years ago. They can be dowloaded from the link at the bottom of this page.

This is both right and wrong. I Have read the secret files. The highly redacted secret files with lots missing. Some documents are mostly blacked out. The rest remains sealed until late this century ... long after we are dead.

 

[Hip]

This is both right and wrong. I Have read the secret files. The highly redacted secret files with lots missing. Some documents are mostly blacked out. The rest remains sealed until late this century ... long after we are dead.

Valerie Eliot Smith says here that most of the documents were made available, and the redacted portions contained personal patient information, and so could not be released.

No juicy revelations came from the release of these documents, and this whole secret files story amounted to very little, in spite of all the conspiracy theories about them.

 

[user9876]

The Principal and university legal team will thus most likely have no understanding that PACE is hogwash, so would have no reason to want to block an FOI request.

So I don't go for this notion of a high-level cover-up at Queen Mary College.

I suspect high levels in the university will know something is up in terms of the FoI requests, lawyers bills and the press office dealing with Tuller's article. I don't think they are covering up but they are not running an adequate governance process to check. White seems able to persuade people that its all normal and not to look too far and I suspect he has done that. But part of the governance process is to look under the cracks. Its not hard with PACE look at the response from them to Tuller's article - they clearly didn't answer the questions. The responses to FoI requests seem very evasive. I would be surprised if the press office and the person handling FoI requests weren't suspicious that something was up. But I suspect there is not a culture in QMUL where academics get challenged or an open door policy to senior management. But then I suspect that senior management are not going to challenge. But they should remember that QMUL are responsible for the trial and the FoI requests and they will hold liabilities.

As well as the principle there is a council who should provide governance and direction.

 

[sarah darwins]

It may be news in our little world of ME/CFS and its websites; but I am not aware of any newspaper articles as yet. Though hopefully there will be some soon.

I expressed myself poorly, Hip. I didn't mean it's a big media story (although yes, it could become one). I meant that plenty of people and institutions beside the academics who ran the trial have a stake in this.

Public money went into the trial, not least (and bizarrely) through the DWP. Both civil servants and (former) politicians involved in that decision have an interest. St Mary's as an institution has a interest. The employment insurance industry has an interest. Private providers of CBT and related services now benefitting from lucrative NHS contracts have an interest.

It's unthinkable that in recent weeks there won't have been more than a few phone calls made along the lines of "Are we okay on this?"

Which is why a lot rests on the strength of character of those who sit on the ICO appeal tribunal. They will be under a lot of pressure. All of us who have suffered the consequences of PACE are depending on them to think clearly and act without fear or favour. I think they will.

 

[MeSci]

I expressed myself poorly, Hip. I didn't mean it's a big media story (although yes, it could become one). I meant that plenty of people and institutions beside the academics who ran the trial have a stake in this.

Public money went into the trial, not least (and bizarrely) through the DWP. Both civil servants and (former) politicians involved in that decision have an interest. St Mary's as an institution has a interest. The employment insurance industry has an interest. Private providers of CBT and related services now benefitting from lucrative NHS contracts have an interest.

It's unthinkable that in recent weeks there won't have been more than a few phone calls made along the lines of "Are we okay on this?"

Which is why a lot rests on the strength of character of those who sit on the ICO appeal tribunal. They will be under a lot of pressure. All of us who have suffered the consequences of PACE are depending on them to think clearly and act without fear or favour. I think they will.

I hope you're right, but in many years of campaigning on a range of issues I have come up repeatedly against attitudes such as:

Ask no questions
Play innocent - it's worked so far
Don't say any more than you have to (although the PACE bunch appear to have verbal diarrhoea when it comes to papers about this trial!)
It'll all sort itself out
Don't worry
Not my responsibility
Don't rock the boat
What elephant?
La la la - not listening

I don't know if it's a particularly British characteristic, but the majority of people in most institutions don't like to stand out from the rest of the establishment. There is also a culture of bullying in many, where one or a few people can prevent any whistle-blowers from gaining any purchase, and can make life extremely difficult for them.

It can take extreme pressure to get things to change.

I just hope that the momentum towards the truth is now sufficient, but the pressure needs to be kept up, I think.

 

[MeSci]

Re the previous list of reasons for inaction, I forgot the classic:

"Someone should do something."

 

[alex3619]

Valerie Eliot Smith says here that most of the documents were made available, and the redacted portions contained personal patient information, and so could not be released.

I looked for that. This is NOT the case in my opinion. The information type that appeared redacted seemed to have nothing to do with personal information. Indeed, much I would consider personal information was left in. So either it was a poor redaction or they were not redacting what they claim they are redacting, or both. I commented on some of this years ago. Furthermore we have no idea what is in the documents that were not released.

 

[Hip]

I looked for that. This is NOT the case in my opinion. The information type that appeared redacted seemed to have nothing to do with personal information.

I only had a quick scan of the secret files, and much of it seemed very banal and of no particular relevance — no juicy bits — so I looked no further.

How, may I ask, did you figure out that the redacted information appeared to be nothing to do with personal data? Did you do this by looking at the context of the viewable text surrounding the redactions?

 

[moosie]

@Mark

Bear in mind that the UK government is in the process of restricting the FOI legislation in the UK; they seem to be planning to partly repeal it, and I think that 'vexatious' requests to academics is one of the main things they've cited as something they want to stop. I suspect that the PACE FOI requests, and the protestations about them from PACE researchers, may even have been a significant driver for the plans to curtail FOI legislation; some of the stuff I've read about their plans seems to suggest this, but I haven't looked into it in any depth.

Anyway, this curtailing of FOI seems to be fairly high on the UK government's agenda right now, it was mentioned just a week or two ago. I don't know how it might affect existing requests going through the system, if they do change the FOI rules, but I do have this fear that by the time the appeal is heard and the deadline to release the data is reached, the law may have changed and they may get away with it. FOI requests seem to take a long time to go through the system as well, so the last chance to submit further FOI requests on PACE may already have gone...[/QUOTE]

the above was by Mark but i seemed to have lost the first part and it no longer looks like a quote - sorry -going for a rest

I've found this petition - not sure these are much use but I'm going to sign it. Sorry this may be in the wrong place - brain gone and don't know where to put this info . . .

https://petition.parliament.uk/petitions/104547

 

[jimells]

"Holy Shit the DSM 6 is proposing vexatious personality disorder as a new category for the next revision"

 

[jimells]

http://valerieeliotsmith.com/2015/1...rs-decision-on-disclosure-of-pace-trial-data/

In 2014, I made a request under the Freedom of Information Act (FOIA) to ascertain the number of requests which had been made in total. The answer wasn’t clear but the figure seemed to be well in excess of 150.

The administration would have to be brain-dead-at-the-switch to not notice 150 FOIA requests all for the same research.

 

[Esther12]

I only had a quick scan of the secret files, and much of it seemed very banal and of no particular relevance — no juicy bits — so I looked no further.

How, may I ask, did you figure out that the redacted information appeared to be nothing to do with personal data? Did you do this by looking at the context of the viewable text surrounding the redactions?

I thought that these were only some of the files people wanted to see. Was it DWP ones? Not MRC ones? I've forgotten the details now, but my impression was that there's still more to come. Also, I thought that there was some juicy stuff, eg: details on Wessely's communication with the DWP.

 

[Hip]

I hope you're right, but in many years of campaigning on a range of issues I have come up repeatedly against attitudes such as:

Ask no questions
Play innocent - it's worked so far
Don't say any more than you have to (although the PACE bunch appear to have verbal diarrhoea when it comes to papers about this trial!)
It'll all sort itself out
Don't worry
Not my responsibility
Don't rock the boat
What elephant?
La la la - not listening

Sounds quite similar to some of the sparkling dialog I saw on TV last night, in a re-run of the classic series Yes, Prime Minster:

- We follow the four-stage strategy.

- What's that?

- Standard Foreign Office response in a time of crisis:

In stage one we say nothing is going to happen.

Stage two, it may happen, but we should do nothing.

Stage three, maybe we should do something, but there's nothing we can do.

Stage four, maybe there was something we could have done, but it's too late now.

(For anyone who has never seen this classic British TV series: it is an acutely-observed comedy about how politics really works behind the scenes; you learn more about politics from this series than you can ever glean from newspapers).

 

[Hip]

I thought that these were only some of the files people wanted to see. Was it DWP ones? Not MRC ones? I've forgotten the details now, but my impression was that there's still more to come. Also, I thought that there was some juicy stuff, eg: details on Wessely's communication with the DWP.

The DWP secret files pdf is found at the foot of this 1st blog article, and the MRC secret files pdf at the foot of this 2nd article.

The fact that Wessely comes across as arrogant and domineering in his communications is about the only revelation I can see in the secret files. Hardy anything we don't know.

 

[Esther12]

The fact that Wessely comes across as arrogant and domineering in his communications is about the only revelation I can see in the secret files. Hardy anything we don't know.

There's an amusing contrast between what he says in a letter which is cc'd to patient group, and what is says in a private meeting with the DWP.

 

[MeSci]

Sounds quite similar to some of the sparkling dialog I saw on TV last night, in a re-run of the classic series Yes, Prime Minster:


(For anyone who has never seen this classic British TV series: it is acutely-observed comedy about how politics really works behind the scenes; you learn more about politics from this series than you can ever glean from newspapers).

There are a couple of other common ones:

There are no plans to...TRANSLATION: We are going to do it.
The government/party stands 100% behind (person's name)...TRANSLATION: We are going to sack him/her/force him/her to resign.

 

[SOC]

Simple question~
Data is supposed to be maintained in such a way as to be readily released upon request. Why would the QMUL legal department and administration simply not instruct the PACE authors to release the data? It's easier, it's cheaper, and it's better for the university's reputation to do what is both transparent and standard in science. The administration has a reason to go through this degree of trouble, expense, and potential damage to the university's reputation. What is that reason if it's not that they fear the damage to the university will be worse if they do release the data?