Stat News: Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

[Tom Kindlon]

https://twitter.com/i/web/status/780062005906505728

 

[Simon]

This article is being discussed at Reddit and Slashdot - you might want to join in the discussion there, which will help bring it to the attention of a much larger audience.

Links to the discussions
Reddit How some very sick patients are fighting bad science with good science : science

Slashdot
How sick patients are fighting bad science with good - Slashdot

 

[Snowdrop]

A family member of mine found it going around on Tumblr

Edit: sorry I mean the article not a discussion.

 

[alex3619]

Reddit How some very sick patients are fighting bad science with good science : science

The article has been removed from that link as it is not peer reviewed research. It was suggested by the moderator that there is another subreddit that it can be posted to.

 

[eastcoast12]

r\Medicine It's a sub filled with doctors.

 

[Yogi]

Sheila Campbell
SEPTEMBER 25, 2016 AT 9:08 AM
Posted on behalf of Margaret Williams:

Simon Wessely is at pains to distance himself from involvement with the PACE trial, but once again he seems to have overlooked the facts.

The Trial Identifier is clear:

“Section 4. TRIAL MANAGEMENT

4.1 WHAT ARE THE ARRANGEMENTS FOR THE DAY TO DAY MANAGEMENT OF THE TRIAL?
The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU.

4.4. WHAT WILL BE THE RESPONSIBILITIES OF THE NAMED COLLABORATORS?
Prof Simon Wessely will oversee the CTU”

It also needs to be recalled that the post of Statistician Clinical Trials Unit Division of Psychological Medicine Ref No: 06/A09 was described as the “Johnson_Wessely_Job” (07/07/2006) at The Institute of Psychiatry where: “The team works under the direction of Professor Simon Wessely, the Unit Director. The team is supported by the regular input of a Unit Management Group from within the Institute of Psychiatry. The statisticians within the Unit also have regular supervision meetings with Dr Tony Johnson from the MRC Clinical Trials Unit. The post holder will be directly responsible to the CTU Manager (Caroline Murphy), supervised by the CTU Statistician (Rebecca Walwyn) and will be under the overall direction of the Head of Department, Professor Simon Wessely”.

So please, Professor Wessely, stop dissembling, as you are fooling no-one but yourself.

Despite the fact that post-hoc changes showed reported results that were up to five times better than those derived from the original protocol, you continue to defend what has been described by many as “fraud” in the PACE trial.

Can it be said that the President of The Royal College of Psychiatrists condones what is widely considered to be scientific fraud?

Margaret Williams
http://www.margaretwilliams.me

Reply

 

[Solstice]

Creed
SEPTEMBER 27, 2016 AT 9:12 PM
I keep reading how the science was flawed and everyone’s jumping on the band wagon to through out the study.

But here’s the facts: I was diagnosed with CFS in 2000 and with a managed exercise program, healthy eating program I manage my symptoms. As time went on I also added acupuncture, Chinese herbs and cranial sacral adjustments. I live a productive live all things considered and so do many people I know who follow a similar program with CFS. Is it a cure – no. do you relapse from time to time, yes. BUT I and thousands like me live better lives because of it!

If this ain't definitive prove, I don't know what is :') .

 

[BurnA]

If this ain't definitive prove, I don't know what is :') .

Managed exercice with cranial sacral adjustments.
Can we get more pseudoscientific?

PS it's nice of Creed to associate both treatments together highlighting his scientific outlook on living "better"

 

[eafw]

The article has been removed from that link as it is not peer reviewed research. It was suggested by the moderator that there is another subreddit that it can be posted to.

r\Medicine It's a sub filled with doctors.

Their rules seem to be peer-reviewed and less than six months old. In that case all we need are some more recent papers by Chalder/White that can be used as a legitimate starting point for a discussion of how bad science continues to propagate in the absence of transparency, honesty or proper review.

Here's one http://www.jpsychores.com/article/S0022-3999(16)30327-0/abstract (there are probably better ones, I looked for what I though was a recent publication by them redoing the PACE data but can't find it)

Maybe an already established redditor could post something that would qualify and then see what the good doctors of r/medicine do with it ?

 

[worldbackwards]

https://twitter.com/i/web/status/780923485350690816

 

[Snowdrop]

Someone should tell Creed that so many have been there before him. And even as there seems to be a remission due to these things it doesn't change the fact that ME can progress regardless. It does so slowly sometimes. And that these therapies cannot stop that. Years from now Creed and others could be worse off and begging for proper treatments.

I suspect that stories like this are form the mildly affected who have been sick for maybe a few years not decades.

The reality is that no matter what things you try it's still possible to get worse over time. Not always perhaps but it's a gamble that one should not be so smug about.

 

[worldbackwards]

Raw Story is, as known to me since about two minutes ago, an influential and respected US political site:

https://twitter.com/i/web/status/779666064334401536

 

[BurnA]

I suspect that stories like this are form the mildly affected who have been sick for maybe a few years not decades.

He does cranial sacral adjustments. Enough said I think.

I don't think it's quite fair to assume "the mildly affected" are also stupid enough to believe in quackery.

There is always one, as the saying goes, and in this case Creed is that one.

 

[Snowdrop]

He does cranial sacral adjustments. Enough said I think.

I don't think it's quite fair to assume "the mildly affected" are also stupid enough to believe in quackery.

There is always one, as the saying goes, and in this case Creed is that one.

Not stupid. I was referring to the idea of this or that (whatever) caused remission. Even so many of the more severely ill have gone through this when less affected. Many have felt better for years only to become more ill later. I don't think when this happens that it is necessarily correlated to what else is happening at the the either way (getting better or getting worse).

 

[flybro]

Creed is just as likely to be a TATT, I dont for one minute believe that more than a handful of pwme made it into the study.

How many PWME have raised white blood cells, frequently, where further investigation rules viral evidence out.
What about PWME and UTI's, raised temperature, low temperature?

because these would rule them out the study, and that's just the ones of the top of my head.