Trial by Error: The Dutch Studies +

[RogerBlack]

They( tptb in the UK and the US who lead the way) have a long term agenda which primarily concerns saving large amounts of money by throwing cbt/get at every difficult to diagnose neuro immune illness out there ( guessing me/cfs represents the biggest savings due to the numbers).

It's astonishing they don't do the numbers sanely.
I am 'fortunate' enough to be on the highest rates of disability benefit in the UK.
Assuming, for the moment that this remains the case, this directly over the next years will cost them $500K or so - depending on how long I live.
Add a largish slice to that (or perhaps the same again, if I was in the career I was headed for) in terms of lost tax revenue, multiply out by the whole patient population, add lost earnings of carers, and it's a ridiculous figure.
Every tiny part of the aparatus is penny-pinching, and missing the massive costs induced by that.

 

[actup]

@RogerBlack, I so agree with you. Fwiw, I believe those making these policies are short term thinkers and I suspect they'd rather have immediate savings from denying benefits ( esp. with recessionary pressures).

 

[Dolphin]

Robert McMullen ‏
These are the posters which @davidtuller1 refers to in his blog about FITNET: http://www.virology.ws/2016/12/02/trial-by-error-continued-the-dutch-studies-again-and-an-esther-crawley-bonus/

https://twitter.com/i/web/status/808003502064668673

 

[Jan]

Shocking, so one of these must be a lie? Either they do or they don't spontaneously recover without treatment, which is it?

Private Eye and Phil Hammond should be sent these. I don't remember David Tuller quoting this, and I'm sure he would have done had he been aware. Perhaps someone should drop him a line too?

All members of the MEGA team ought to read this too, it's rather important.

 

[Esther12]

I don't remember David Tuller quoting this, and I'm sure he would have done had he been aware.

Tuller did refer to this at the end of his most recent blog (this was the 'extra' featuring Crawley. He didn't provide all the details that were there though.

 

[taniaaust1]

Shocking, so one of these must be a lie? Either they do or they don't spontaneously recover without treatment, which is it?

Private Eye and Phil Hammond should be sent these. I don't remember David Tuller quoting this, and I'm sure he would have done had he been aware. Perhaps someone should drop him a line too?

All members of the MEGA team ought to read this too, it's rather important.

Crawley just states whatever she believes will be best to say at the time so should we be so surprised to see her saying two completely opposite things. From what I can see, there is no real truth to any of her stuff.

 

[Barry53]

Crawley just states whatever she believes will be best to say at the time so should we be so surprised to see her saying two completely opposite things. From what I can see, there is no real truth to any of her stuff.

It's classic of deeply manipulative people. They never let the truth get in the way of a good bit of psycho-babble. Plenty of examples of that on the news these days.

 

[RogerBlack]

Shocking, so one of these must be a lie? Either they do or they don't spontaneously recover without treatment, which is it?

For extra fun, neither may be a lie.

For posters that are reports of papers (or to be papers) using different criteria.
The idea of a poster is to give information about specific research.
Often the idea is that you can go and buttonhole the author at the conference and talk to them about it.
Language used on posters is not reviewed by anyone.

Posters also have limited space.
However, if the resultant paper does not in large letters (and of course it won't) point out contradictions, or inconsistencies in definitions - that's the real problem, and that is bordering on, or leaping straight into lying.

 

[Dolphin]

For extra fun, neither may be a lie.

For posters that are reports of papers (or to be papers) using different criteria.
The idea of a poster is to give information about specific research.
Often the idea is that you can go and buttonhole the author at the conference and talk to them about it.
Language used on posters is not reviewed by anyone.

Posters also have limited space.
However, if the resultant paper does not in large letters (and of course it won't) point out contradictions, or inconsistencies in definitions - that's the real problem, and that is bordering on, or leaping straight into lying.

No paper has been published on the data from the poster as far as I know.

 

[user9876]

For extra fun, neither may be a lie.

For posters that are reports of papers (or to be papers) using different criteria.
The idea of a poster is to give information about specific research.
Often the idea is that you can go and buttonhole the author at the conference and talk to them about it.
Language used on posters is not reviewed by anyone.

Posters also have limited space.
However, if the resultant paper does not in large letters (and of course it won't) point out contradictions, or inconsistencies in definitions - that's the real problem, and that is bordering on, or leaping straight into lying.

No they are contradictory comments. There is no caveat/criteria on either of them. It is up to scientists to specify claims in a meaningful way and to include such caveats - it could be buried in the detail but that is not a good clear statement of results.

 

[Countrygirl]

University of Bristol's statement regarding their support of the FITNET trial.


http://www.bristol.ac.uk/media-library/sites/red/documents/research-governance/FITNET-NHSDec16.pdf

University of Bristol statement about the FITNET-NHS trial The publicity surrounding the launch of this trial on 1 November 2016 resulted in many patients coming forward wishing to take part, and many positive comments supporting the research from members of the public. A small number of people contacted us with some concerns. In line with the University’s commitment to research integrity, we have undertaken a review of the research governance pathway. FITNET-NHS is a trial funded by the National Institute of Health Research Health Technology Assessment Programme. The University of Bristol is the Research Sponsor for this trial. As a Research Sponsor, the University takes primary responsibility for ensuring that the design of the study meets appropriate standards and that arrangements are in place to ensure proper conduct and reporting. The scientific peer review process for this trial was part of the condition for funding to be awarded. In addition, the trial has been reviewed by the Health Research Authority in accordance with their standards and remit. As part of that process the trial was scrutinised and approved by an NHS Research Ethics Committee. The University’s research governance review confirmed that all appropriate reviews and approvals were in place for this study to proceed; therefore we confirm continued Sponsorship for this research. In line with our quality assurance framework we will continue to monitor this study to ensure the integrity of the research. More information about the trial is available on the FITNET-NHS webpages (http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/).

December 2016

 

[trishrhymes]

Thanks @Countrygirl. Can you give a link to the statement. I wonder who wrote it...

 

[user9876]

So bristol university hasn't actually looked at the trial but just checked reviews were in place. They say they will continue to monitor the integrity but their statement at the begining says the integrity is broken.

The publicity surrounding the launch of this trial on 1 November 2016 resulted in many patients coming forward wishing to take part

This suggests that those coming forward will have already been biased towards the result by the publicity. They will be expecting a cure and that could bias the results in a non-blinded trial with only subjective outcomes.

 

[slysaint]

"chronic-fatigue/fitnet-nhs/)."
says it all really

 

[RogerBlack]

No they are contradictory comments. There is no caveat/criteria on either of them. It is up to scientists to specify claims in a meaningful way and to include such caveats - it could be buried in the detail but that is not a good clear statement of results.

Posters at conferences are not aimed at the public. They are aimed at scientists attending the conference with the general understanding that the research they represent may be incorrect and will never be published. And that you should contact the researcher if you find anything interesting in there. (they may in some cases be hanging out by their poster much of the time)

It's perhaps the best case if they don't check these for consistency and report the actual heading of the research, as it gives an insight into what they 'really' think before peer review and other changes.
The above may indicate for example that they don't have a clear absolute definition of 'recovery' that they feel they must stick to, and provides a most excellent heads-up to criticise subsequent papers.
(not that in the case of the researcher in question people wouldn't be looking carefully at recovery).

 

[user9876]

Posters at conferences are not aimed at the public. They are aimed at scientists attending the conference with the general understanding that the research they represent may be incorrect and will never be published. And that you should contact the researcher if you find anything interesting in there. (they may in some cases be hanging out by their poster much of the time)

It's perhaps the best case if they don't check these for consistency and report the actual heading of the research, as it gives an insight into what they 'really' think before peer review and other changes.
The above may indicate for example that they don't have a clear absolute definition of 'recovery' that they feel they must stick to, and provides a most excellent heads-up to criticise subsequent papers.
(not that in the case of the researcher in question people wouldn't be looking carefully at recovery).

Being a poster does not excuse lack of accuracy and precision in statements made.

Poster sessions like seminars should be an early chance to discuss work but including inaccurate statements does not allow for good discussion. The inference chain following from the statements may well be for discussion - does the quality of the data support the hypothesis being presented.

 

[Countrygirl]

Thanks @Countrygirl. Can you give a link to the statement. I wonder who wrote it...

Hi Trish,

Yes. of course. I was interrupted mid-post this morning.

 

[Barry53]

Being a poster does not excuse lack of accuracy and precision in statements made.

Poster sessions like seminars should be an early chance to discuss work but including inaccurate statements does not allow for good discussion. The inference chain following from the statements may well be for discussion - does the quality of the data support the hypothesis being presented.

I am inclined to agree here, because it is not just the general public who are misinformed and thereby misguided, but also many health professionals - who themselves may not realise there are issues to be queried on such posters, rather than taken at face value.