TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

[moosie]

you would think ben goldacre would be THE person to get this out . . . and he woud be if it was antother area of science . . . is he too close to the PACE 'masterminds'?

 

[Wildcat]

.
Too right, Moosie! Re Ben Goldacre ....... Hollow laugh. Not a chance of Ben Goldacre publicising David Tuller's exposee of PACE, unless its an act of CYA (Cover Yer Arse). Goldacre has allowed his Bad Science Forum members to trash credible ME research and in particular, write abusively about ME and the ME community on his forum. Individual ME campaigners who posted on the Bad Science Forum (notably Suzy Chapman, the *dx revision watch* DSMV Blogger, and Dr Angela Kennedy) were mobbed and treated atrociously by the Bad Science Forum vocal crowd.

After the 'Jonas' case (a bad science forum member found guilty of bringing his profession into disrepute by the Health Professionals Council due to his posts about Dr Sarah Myhill on the BS Forum), the BS forum members continued to trash the disease, the ME sufferers and the campaigners, until the subject was banned on the Bad Science forum (probably for their own safety as some posts appeared to be at risk of being complained about at a high level yet again). . They just couldn't seem to stop themselves being vile to, and about, ME sufferers and campaigners.

The Bad Science Forum 'Jonas' Health Professionals Council Case
http://forums.phoenixrising.me/index.php?threads/jonas-found-guilty.13786/


(Edited with additional info)

 

[TiredSam]

.
Re Ben Goldacre ....... Too right, Moosie. Hollow laugh. Not a chance of Ben Goldacre publicising David Tuller's exposee of PACE, unless its an act of CYA (Cover Yer Arse). Goldacre has allowed his Bad Science Forum members to trash credible ME research and in particular, write abusively about ME and the ME community on his forum.

After the 'Jonas' case (a bad science forum member found guilty of unprofessional behaviour by the Health Professionals Council due to his posts on the BS Forum), the BS forum members continued to trash the disease, the ME sufferers and the campaigners, until the subject was banned on the Bad Science forum. They just couldn't seem to stop themselves being vile to, and about, ME sufferers and campaigners.

What a shame, I really enjoyed reading his book "Bad Science". I've got his following books on my "to get and read" list, guess I'll cross them off now. I often wondered why he hadn't spoken on ME.

 

[Wildcat]

It seems that Wessely was Ben Goldacre's PhD Supervisor. (please correct me if that is wrong).

 

[Wildcat]

.
http://forums.phoenixrising.me/index.php?threads/jonas-found-guilty.13786/page-3

Wildcat wrote 2011: "The self-proclaimed 'Skeptics' on the Bad Science Forum are not concerned about misconceptions concerning our disease. If they were, they would have investigated the nonsense of the 'PACE Trial', and also Phil Parker's Lightning Process, and the 'SMILE Trial'. We need to stop being naive about the term 'Skepticism', and to stop confusing it with true scepticism."

The 'Jonas' Health Professionals Council Case
http://forums.phoenixrising.me/index.php?threads/jonas-found-guilty.13786/

 

[eafw]

This is a great piece of reporting from David Tuller.

Big contrast to the likes of Goldacre (already mentioned) who go after easy targets. That is, it takes little effort for "scientists" and " sceptics" to point and laugh at people who believe in homeopathy or crystals - and in fact whole careers can be built on the back of such things.

Much harder to stand and challenge the actual bad science, such as PACE, especially when you're going against the vested interests of the old boys club and establishment voices.

 

[Snow Leopard]

It seems that Wessely was Ben Goldacre's PhD Supervisor. (please correct me if that is wrong).

Ben Goldacre doesn't have a PhD, he is a medical doctor (has a MBBS), so that can't be right.

Where do these rumors start, I wonder?

 

[SOC]

Ben Goldacre doesn't have a PhD, he is a medical doctor (has a MBBS), so that can't be right.

Where do these rumors start, I wonder?

Good lord, so he doesn't even have research experience?! The guy sounds more and more like a self-important cynical jerk than a legitimate scientific skeptic. How disappointing (although not entirely surprising). His stuff has always looked a little more arrogant and emotional than scientifically rational.

I'm all for scientific skepticism, but pseudo-skeptics both drive me up a wall and make me sick. They're more about being nasty than digging down into the actual science and making calm, rational evaluations.

 

[Wildcat]

.
Ben Goldacre: A First in Medicine from Oxford, a British Academy funded Masters in Philosophy
from KCL. Member of the Royal College of Psychiatrists. Research Fellow at the Institute of Psychiatry.

It was probably the Masters from KCL that started the rumour.

He does have research experience.

'Goldacre passed the MRCPsych Part II examinations in December 2005 and became a member of the Royal College of Psychiatrists.[14] He was a research fellow at the Institute of Psychiatry in London in 2008,[15] and a Guardian research fellow at Nuffield College, Oxford, in 2009.[16]

In 2012, Goldacre became a Wellcome Research Fellow in Epidemiology at the London School of Hygiene and Tropical Medicine.[4][17][18][19]

In 2015, Goldacre moved to the Nuffield Department of Primary Care Health Sciences's Centre for Evidence-Based Medicine, joining a project funded by a grant from the Laura and John Arnold Foundation.[20]'

.

 

[Tom Kindlon]

.
Ben Goldacre: A First in Medicine from Oxford, a British Academy funded Masters in Philosophy
from KCL. Member of the Royal College of Psychiatrists. Research Fellow at the Institute of Psychiatry.

It was probably the Masters from KCL that started it.

He does have research experience.

'Goldacre passed the MRCPsych Part II examinations in December 2005 and became a member of the Royal College of Psychiatrists.[14] He was a research fellow at the Institute of Psychiatry in London in 2008,[15] and a Guardian research fellow at Nuffield College, Oxford, in 2009.[16]

In 2012, Goldacre became a Wellcome Research Fellow in Epidemiology at the London School of Hygiene and Tropical Medicine.[4][17][18][19]

In 2015, Goldacre moved to the Nuffield Department of Primary Care Health Sciences's Centre for Evidence-Based Medicine, joining a project funded by a grant from the Laura and John Arnold Foundation.[20]'

.

For better or worse, I think a lot of doctors do research without having PhDs.
I have been impressed with how many "MD PhD"s there are in the US. I think it is rarer in other countries*.

*for doctors to have PhDs. I'm aware that MD isn't the usual term for a medical degree in many countries including the UK and Ireland.

 

[Wildcat]

Either way - Goldacre and his Bad Science 'Skeptic' Forum have produced a resounding silence about the PACE Trial and the Smile Trial bad science, Lightning Process and other ME related nonsense. Despite Goldacre building a high public profile and reputation for exposing 'Bad science'.

 

[Sidereal]

Ben Goldacre doesn't have a PhD, he is a medical doctor (has a MBBS), so that can't be right.

Where do these rumors start, I wonder?

He was a research fellow at King's which is Wessley's institution. Most junior doctors (non-consultants) who do research don't do an actual PhD, just do crappy resume-padding "research" like this to get out of stressful clinical medicine / wards for a while. I've had to put up with lots of idiots like this. They come out of medical school with delusions of grandeur and think they're better than all the non-medics in the research group when in actuality they don't know shit. I had to explain to one such registrar in psychiatry who was doing "research" what those t and F and p things were in papers.

 

[Sidereal]

For better or worse, I think a lot of doctors do research without having PhDs.
I have been impressed how many "MD PhD"s there are in the US. I think it is rarer in other countries.

In Ireland (maybe in the UK also, not sure?), some of these doctors with MBBS degrees do an MD degree afterwards which is different to an MD degree in America (confusing). An MD in America is just a medical degree whereas here an MD is a shitty little research degree after medical school which is below the level of a PhD. It's kinda funny to me how some people get to call themselves professors of medicine when they have nothing but an undergraduate degree in medicine. One set of rules for doctors, another set of rules for the rest of us. Business as usual in other words.

 

[Esther12]

Ben Goldacre doesn't have a PhD, he is a medical doctor (has a MBBS), so that can't be right.

Where do these rumors start, I wonder?

In the Lancet Wessely said:

But before he joined the scientific establishment, Goldacre used to work for me.

 

[SOC]

For better or worse, I think a lot of doctors do research without having PhDs.
I have been impressed how many "MD PhD"s there are in the US. I think it is rarer in other countries.

Define "do research".

Yes, there are MD PhD's. Those people have training in building, carrying out, and evaluating scientific research. We need more of those people. It's the people who did little-to-no genuine research as part of their education, but are doing so-called research later in their careers that frighten (and aggravate) me. It's like thinking you can perform surgery because you have cleaned a fish or dissected a frog.

Arrogant people think they can do with no training what other brilliant people know they needed years of education to do properly. There's way, way too many of that arrogant type in medicine. They think they know science when their actual scientific training is very limited. What many of them know is the equivalent of vocational school in science. They learned how to apply science in a limited way using rules of thumb, but they never learned to work from basic principles to solve new problems. They don't know the fundamentals of science (correlation is not causation, guys). They don't know how to do, or even read, scientific research.

I don't say doctors need to have a science education on top of the massive amount of work they need to do to memorize the mountains of information they need. Most of them would never get out of school. What they do need to do is stop pretending they are scientists, and especially pretending that they know anything about scientific research. It's the sheer arrogance of not recognizing the limitations of their knowledge that makes them so dangerous to the rest of us.

 

[Tom Kindlon]

In Ireland (maybe in the UK also, not sure?), some of these doctors with MBBS degrees do an MD degree afterwards which is different to an MD degree in America (confusing). An MD in America is just a medical degree whereas here an MD is a shitty little research degree after medical school which is below the level of a PhD. It's kinda funny to me how some people get to call themselves professors of medicine when they have nothing but an undergraduate degree in medicine. One set of rules for doctors, another set of rules for the rest of us. Business as usual in other words.

Peter White did one of those MDs.
His qualifications are listed here:

http://www.wolfson.qmul.ac.uk/a-z-staff-profiles/peter-d-white
Peter D White, BSc, MBBS, MD, FRCP, FRCPsych
Professor of Psychological Medicine

The MD thesis info is out there somewhere but I'm not going to look at the moment.

 

[Esther12]

Finished the third part. All very interesting and thanks a lot to everyone involved.

I am so knackered now - am I reaching my limit on PACE stuff?! I reckon I've got a few more years of outrage left tbh.

 

[Esther12]

Also - great to have @Tom Kindlon there as a representative of patient concerns about PACE, instead of Wessely and White's description of why patients are concerned about PACE.

 

[Denise]

This series by David Tuller is really good. My deepest appreciation to all involved!

How can we best capitalize on this work?
I am just putting a couple of thoughts out here but hope others will add to/build on them.

Would getting a retraction of all things PACE be sufficient for people?
What effect would that have (or not) on other material out there for healthcare professionals and the public? (I am referring to healthcare education materials around the world)?
What steps are involved in a concerted effort to address any/all of this?

 

[Kati]

8 million dollar trial and they couldn't find anywhere else than a 10 meters hallway to perform a 6 minutes walk test? it was probably as long as their tape measure could go.

UK government needs to ask for their money back.