Trial By Error: BMJ Amends Last Week’s PACE Article

[ladycatlover]

And it still leaves me fuming, angry, pissed off, etc etc etc.

It reads like an attack on all patient advocates rather than a clear report on the (bloody useless) report from the HRA.

 

[Andy]

And that's the original version, not the new version.

So what's the URL for the new version?

 

[Lucibee]

So what's the URL for the new version?

Same as the old one of course! But scihub only captures an archived version of the old one.

 

[inox]

Actually thought it was open access, as I don't pay for it or have any special access. Or so I thougt. Turns out having a norwegian IP + once clicked 'yes, I'm a health care worker' (I'm not) on a page that translates to 'the health library' I'm getting access through them. Funded by 'the national institute of public health'.

But enough bragging

OK. Here are quotes from the original of all the bits that refer to "activists" etc. Does anyone have access to the updated version to see what's been changed and what's not?

Other things might have changed, only compared the paras quoted.

Edit: For those having trouble reading - scroll down to post underneath, changes only posted.

(para 3) "Although the HRA’s intervention will come as a comfort to the team that led the trial and to the Medical Research Council, which funded it, it is unlikely to put to bed a longstanding campaign by activists to discredit it."

Unchanged

(para 5) "Activists with strong views about the nature of their disease and what does or does not work in treating it have never accepted the result and have attempted to discredit the conduct of the trial and those who led it."

Additional sentence:

Activists with strong views about the nature of their disease and what does or does not work in treating it have never accepted the result and have attempted to discredit the conduct of the trial and those who led it. Many academics have also raised concerns about the trial’s conduct.3

(para 6) "In recent years US activists have discovered PACE and have repeated all the same arguments originally put in the UK, while ignoring or discounting the answers provided."

Unchanged.

(para 10) "Nor, as critics have claimed, did Queen Mary University of London routinely deny access to data."

Unchanged.

(para 11) "Finally, Montgomery looks at changes made to eligibility criteria and to outcome measures, which the opponents of PACE have claimed were manipulated to get the result that emerged."

Unchanged.

(para 14) "But David Tuller, a US activist, responded in a blog by saying, “Any claim that the HRA has given PACE a blanket clean bill of health is going way beyond what the report itself states.""

Additional sentence:

But David Tuller, a US activist and senior fellow in public health and journalism at the University of California, Berkeley, responded in a blog by saying, “Any claim that the HRA has given PACE a blanket clean bill of health is going way beyond what the report itself states.

Not about activists - but between para 10 and 11, a new sentence/para added:

“In all but three of the 21 cases the judgment made by QMUL was vindicated. This suggests that the QMUL and the triallists approached the issue of transparency of data for analysis responsibly,” he says.

Edit: Added quote box.

 

[inox]

Only the changed bits, for easier reading. The new sentences bolded:

Activists with strong views about the nature of their disease and what does or does not work in treating it have never accepted the result and have attempted to discredit the conduct of the trial and those who led it. Many academics have also raised concerns about the trial’s conduct.3

But David Tuller, a US activist and senior fellow in public health and journalism at the University of California, Berkeley, responded in a blog by saying, “Any claim that the HRA has given PACE a blanket clean bill of health is going way beyond what the report itself states.

 

[dreampop]

(para 3) "Although the HRA’s intervention will come as a comfort to the team that led the trial and to the Medical Research Council, which funded it, it is unlikely to put to bed a longstanding campaign by activists to discredit it."

Unchanged

(para 5) "Activists with strong views about the nature of their disease and what does or does not work in treating it have never accepted the result and have attempted to discredit the conduct of the trial and those who led it."

Wow, well that's digging in.

 

[Lucibee]

Only the changed bits, for easier reading. The new sentences bolded:

Activists with strong views about the nature of their disease and what does or does not work in treating it have never accepted the result and have attempted to discredit the conduct of the trial and those who led it. Many academics have also raised concerns about the trial’s conduct.3

omg they are making it even worse by adding that sentence - that implies that the "activists" they are talking about are not those who have raised legitimate concerns about the trial's conduct.

Ref 3 is the reference to a letter about @dave30th 's letter to The Lancet, which was previously cited at the end of the first sentence.

Let's all wave at Dave in his balloon as he sails away from the activist quagmire! [that's a joke btw]

 

[inox]

omg they are making it even worse by adding that sentence - that implies that the "activists" they are talking about are not those who have raised legitimate concerns about the trial's conduct.

Ref 3 is the reference to a letter about @dave30th 's letter to The Lancet, which was previously cited at the end of the first sentence.

Let's all wave at Dave in his balloon as he sails away from the activist quagmire! [that's a joke btw]

Ah, didn't notice the reference - the first time I read it, and didn't realise the article had been editet, it just came of as a bit wierdly out of place sentence. See your point. Not sure if the article by by Torjesen - "Pressure grows on Lancet to review "flawed" PACE trial" - is open access, so adding the opening para:

Over a hundred academics, patient groups, lawyers, and politicians have now signed an open letter to the Lancet calling on the journal to commission an independent reanalysis of the data from the PACE trial—a study into treatment for myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), which it published the results of in 2011.1

https://www.ncbi.nlm.nih.gov/pubmed/30135174

Edit: spelling

 

[WillowJ]

they are making it even worse by adding that sentence - that implies that the "activists" they are talking about are not those who have raised legitimate concerns about the trial's conduct.

But of course, because any concerns about the trial's conduct could never be correct. It was a thing of beauty. The definitive trail that got where it was always meant to go. How could there be any real concerns?

smh

 

[Alvin]

But of course, because any concerns about the trial's conduct could never be correct. It was a thing of beauty. The definitive trail that got where it was always meant to go. How could there be any real concerns?

smh

Indeed. I suggest they prove they can cure cancer with CBT since that kind of statistical distortion could do it. Lets see how long their medical licenses stay valid

 

[Kalliope]

 

[Alvin]

Something i just thought of, have any of the Nobel laureates from OMF signed onto any of the PACE criticisms?
If so thats worth also mentioning.

 

[Forbin]

When it comes to patients, perhaps instead of "activists" they should have used the term "engaged patients," as this 2016 World Health Organization document would seem to suggest.


Patient Engagement: Technical Series on Safer Primary Care

Patient engagement is increasingly recognized as an integral part of health care and a critical component of safe people-centred services. Engaged patients are better able to make informed decisions about their care options. In addition, resources may be better used if they are aligned with patients’ priorities and this is critical for the sustainability of health systems worldwide.

Health practitioners have multiple competing priorities, which may sometimes appear to conflict with patient safety. These may include organizational, reputational, financial priorities and self-esteem, amongst others. However, patients have their safety and well-being as primary drivers and thus, they can raise this as a priority in the health care they receive.

A key factor that may hinder patient engagement is the patient’s perception of their role and status as subordinate to clinicians. For example, patients may fear being labelled “difficult” or they may take a passive role as a means of actively protecting their personal safety (6). Such challenges can be overcome by improving communication and educating both patients and health care providers to view health care as a partnership between the patient and the provider.

Meaningful and effective engagement begins with empowering patients and health care providers. Patients need to have sufficient information about their health conditions and about health care systems and processes so that they can be a knowledgeable partner in decision making. Thus, it is important for health care providers and policy-makers to ensure that patients and families have access to accurate, appropriate and up-to-date information and understand how to use this information.

https://apps.who.int/iris/bitstream/handle/10665/252269/9789241511629-eng.pdf

 

[Alvin]

When it comes to patients, perhaps instead of "activists" they should have used the term "engaged patients," as this

But that would suggest patients making scientific and statistically backed up arguments should be treated as legitimate.

 

[aza]

More 'US Activists' ?

I like the work of Underhill
https://www.sciencedirect.com/scien...87715003825?dgcid=raven_sd_recommender_email#!