PACE 10 year follow-up: feasibility study

[RogerBlack]

Yes..if there was ever any sense that such work could provide anything useful at all.

I strongly disagree with this.
Assuming, of course it wasn't improperly spun, with the questionaires biased.

We would get a decent survey of ~600 or so moderate CFS patients (with some fraction of confounders), and their life-courses since PACE, to compare with the general population.

Things I'd want to know:
Number of employers, time employed, part/full time, any concessions by employers, was health a reason for leaving.

Similarly for education, if it was something that the person would normally have chosen to do.

Current and past benefit status. (including if appeals failed)
Are you receiving help with personal care.
Could you do with personal care help, if it was available.

Workseeking/retired/... status.
How have you been treated by the NHS.
Subsequent diagnosises. (especially CFS misdiagnosis)

What if anything to you believe most helped you.
Do you believe CBT/GET/... helped you (this should be asked at the very end).

There has not been enough longitudinal work done on CFS.



From memory, also, the patient consent forms said 'I give consent to researchers contacting me in the future...' - it did _NOT_ say 'the researchers in this study'.

 

[A.B.]

I strongly disagree with this. Assuming, of course it wasn't improperly spun, with the questionaires biased.

None of their CBT/GET research isn't spun.

 

[snowathlete]

I don't understand why they would bother with a sample of 60 rather than sending forms out to everyone they can trace.

Getting ill people to respond to this sort of thing is hard, add to that all the controversy over data release which has been in the papers, and then that many patients will have moved house over the years and with just 60 patients, the idea that 45 are going to respond seems a bit fanciful to me. edit: So I agree with you it's strange they are only sending it to 60 patients, why not all of them? Or none? It seems completely pointless anyway, because they are no longer in the treatment arms.

 

[user9876]

Getting ill people to respond to this sort of thing is hard, add to that all the controversy over data release which has been in the papers, and then that many patients will have moved house over the years and with just 60 patients, the idea that 45 are going to respond seems a bit fanciful to me.

That's why I suspect this is being done so they can say that they tried to follow up but it wasn't practical. I did wonder if the choice of sites may also reflect the chances that people move and become untraceable.

 

[snowathlete]

That's why I suspect this is being done so they can say that they tried to follow up but it wasn't practical. I did wonder if the choice of sites may also reflect the chances that people move and become untraceable.

are they contracted to attempt follow up? Perhaps to the DWP.

 

[Barry53]

Odd, as QMUL are trying to use White's retirement to avoid releasing PACE info:

As the Chief Investigator has retired we have no one qualified to locate, retrieve and extract the information requested.

He is obviously not retired, just from clinical practice perhaps?

• QMUL would have been able to access his services if they and he had had the will to do so ... unsurprising they did not.
• I find it hard to believe they did not have someone who could have fulfilled the FOI request.

Seems instead, they had the will to not provide the information.

 

[NelliePledge]

I reckon they'll be emailing out to people in that Sussex group that is dominated by PACE quisling

 

[Seven7]

I think this is about if you have this kind of study open, then they cannot release the data yet until the study is completed.
Is this a ploy to hold the data/?????

 

[Alvin2]

I think this is about if you have this kind of study open, then they cannot release the data yet until the study is completed.
Is this a ploy to hold the data/?????

Thats interesting.
In general its amazing how deep down the rabbit hole the nefarious will go to protect alternative facts.

 

[RogerBlack]

None of their CBT/GET research isn't spun.

Unfortunately yes.

 

[Art Vandelay]

We wish to find out: how healthy participants are now, whether they have had any other illnesses since leaving the trial, how they are functioning, their economic status, how they view the concept of recovery, and whether they would be willing to participate in a qualitative study about their illness and current health.

Ah, the old 'qualitative study', which no doubt will not include any useful, objective measures.

They're learning.


[EDIT: as background: when I worked in government, we noticed that whenever government agencies used qualitative studies to argue their case, it meant that the objective data wasn't on their side.]

 

[Maggie21]

"a random sample"

But you have already stuffed the randomisation, so what is the point of doing any further data collection?

Surely if the study is to have any validity you have to ask the question of all the participants, not just a 'random sample'. Otherwise don't you risk the possibility of skewing the results in favour of just a small sample - I mean God forbid that would ever happen!

Why such a small sample too - apart of course from it enabling you to be really selective - oops sorry I mean random?!

 

[Peter Trewhitt]

Will they be informing the participants of any conflict of interests?

 

[char47]

hmmmm so they "wish to find out........how they view the concept of recovery" do they? Well for that read "we'd like to word the questions so that they manipulate the participants to answer in such a way as to appear to support our UTTERLY BOGUS 'concept of recovery' as being still so ill that you only score 60 on the SF36, are unable to return to work/education & are more ill than the people we deemed were disabled enough to participate in the first place

Well, you carefully choose your small sample so as to be quite confident of a good result. Then you can publish the small study and win more years of NICE support.

Then, after having basked in the glory for a good while, if you've noticed that some of the questions don't give quite the right outcome, you can tweak them a bit or quietly drop them before applying them to the wider, less carefully selected sample.

I can just see them claiming all 60 are fully recovered but no one wants their data shared.

Hutan & Donner ... precisely.