Scientists and patient organisations call for retraction of PACE recovery paper - open letter

[RogerBlack]

A welcome letter, though I question if a retraction is likely for the reasons posted above.
Hopefully will gain traction in the rest of the scientific community though.

Even if one reviewer of a CFS paper sees coverage like the above it may lead them to be more careful about scrutinising papers, which is good for everyone.

I also note http://www.microbe.tv/contribute/ - this is the donation link for the organisation publishing the letter.
It is primarily lead by Vincent Racaniello, who does many excellent podcasts on the topic of viruses, parasites, evolution and microbiology.
Lots of potentially related topics have been discussed, from XMRV (which alas turned out not to be), to how viruses stay latent in the body, and many others.

I find it great to listen to, as I can excuse myself not understanding due to the biochemistry, not the brain fog.

 

[arewenearlythereyet]

Thank you to all involved in this letter. Hopefully this is the start of toppling bad pseudoscience which will hopefully pave the way for more decent studies and for better patient care from the NHS (providing we don't lose all our medical staff due to Brexit).

Changes like this don't happen overnight, and there will always be more willing to take a back seat and let others do the work. But it only takes a few to topple a regime if the regime is bad. I am sure most professionals that we encounter are good people that feel they don't have a voice. The more this debate gets heard the more opposition will grow. Can't wait to see what happens next.

 

[Sean]

Even if one reviewer of a CFS paper sees coverage like the above it may lead them to be more careful about scrutinising papers, which is good for everyone.

I think that this is one of the indirect but main aims of patient activism: To make it crystal clear to reviewers (and editors, etc,) that their work will be scrutinised, and we will not be afraid to speak out about poor quality review.

They must do their job properly, or find another job. Either way suits me.

 

[user9876]

I don't begrudge doctors who felt they couldn't sign the letter. Medicine in this country is highly conservative and conformist and the GMC are a nightmare when it comes to doctors who stray from the party line. Also the NHS is effectively a monopolistic employer so it is important for doctors not to be ostracised from their fellow professionals if they want to keep practising.

I think we should also understand that calling for the retraction of a paper is not a common event. To add a name to a letter calling for this is not the same as someone saying they are concerned. Hence to do this does require quite a lot of understanding as to why the paper is so bad it should be retracted.

With the recovery paper the argument is the analysis of the data is so bad that it is misleading - there is no accusation that data has been made up. So it does require an good understanding of the arguments. I can see that this may make some professionals worried about signing the letter because they just do not have the necessary uncertainty to say it should be retracted.

I think in saying this it should be pointed out that it is a really big deal that so many academics have called for the retraction of a paper.

 

[trishrhymes]

The Editorial Board of Psychological Medicine

https://www.cambridge.org/core/journals/psychological-medicine/information/editorial-board


They include Sharpe, Wessely, Hotopf, Pariante.

Seeing those names on the editorial board means the paper won't be retracted until either:

- the NICE guidelines are changed radically, both on definition of ME and treatment recommendations, stating clearly that there is no evidence for using GET or CBT. And spelling out that the biopsychosocial model of false illness beliefs and deconditioning is wrong.

- a definitive biomedical test for ME is found and approved.

- a drug treatment is proved to work.

- and legal action is taken against journals and/or authors who publish misleading papers like all the PACE papers and doctors who persist in recommending GET.

I fear it's going to take a while, but think this letter can make a valuable contribution in all the above.

I'm so looking forward to the day when all the psych journals are forced to trawl back through their archives and find all those dreadful papers by the likes of Chalder, Crawley, Sharpe, White Wessely and their multitudes of students who have written and had published nonsense based on the BPS bullshit. There's going to need to be mass retractions and re-education of therapists.

Dream on...

What seems much more likely, alas, is that they will just remove those with biomedically diagnosable ME from their MUS lists, and sail on regardless with their fatigue clinics.

 

[user9876]

Seeing those names on the editorial board means the paper won't be retracted until either:

I cannot see Psych medicine retracting the paper unless the editors are embarrassed by the lack of quality. The journal has not signed up to COPE which tries to deal with such issues. The question is whether Cambridge University Press think it damages their brand to have published such rubbish and to have not taken complaints seriously.

- the NICE guidelines are changed radically, both on definition of ME and treatment recommendations, stating clearly that there is no evidence for using GET or CBT. And spelling out that the biopsychosocial model of false illness beliefs and deconditioning is wrong.

We should remember that the institutions that White, Wessely etc work for have an interest in keeping these treatments going as it is part of their business and they employ therapists to do the work.

- and legal action is taken against journals and/or authors who publish misleading papers like all the PACE papers and doctors who persist in recommending GET.

I think that will be difficult as journals try to exempt themselves from legal liability. Still you never know what a court would rule - especially if they have been seen to not act properly when issues are raised.

 

[slysaint]

The response from AfME "if they want us to [sign]they can email sonya@actionforme.org.uk" is not the attitude you should expect from one of the main ME charities in the UK.
If they really cared, they are the ones who should be asking/making it their business to sign.

And what about the MEGA team?. They make a point of telling everyone their research will not be another PACE.

 

[Yogi]

https://twitter.com/i/web/status/841572506624499712

Yes put the ball in their court.

https://twitter.com/i/web/status/841573144116748288

Good one!!

https://twitter.com/i/web/status/841579174120833024

Ha! board decision.

A signature of a ME charity for this letter should require no thought or consideration at all.This shows again InActionforME are not working for ME patients but their interests lie else where.

https://twitter.com/i/web/status/841386286132924416

F*ck off InActionforME

 

[Binkie4]

@slysaint

And what about the MEGA team?. They make a point of telling everyone their research will not be another PACE.

It's been a while since the discussions on MEGA. Cannot remember what doctors were involved apart from Stephen Holgate. Wasn't Pariante involved? ( And now we find him on the editorial board of " Psychology Today". Conflicts of interest all round) It would be reassuring to have their signatures on the letter. Also- to have an interim report from the patient reps on how things are going. ( on a new thread- don't want to go off topic)

 

[keenly]

Do you mean personal reasons ?

Their professions are based on science, if they refuse to stand up to poor science they are disrespecting their profession.

Some will always acquiesce with a corrupt, and unjust system, instead of standing up for what is right.

 

[keenly]

I have added this open letter to the editor of Psychological Medicine to the Agenda for a meeting at the House of Lords tomorrow - where we will be discussing both PACE and the NICE guideline on ME/CFS

We shall be sending a full copy of the Wilshire et al re-analysis of the PACE trial data to NICE - hopefully open access publication of the full paper will now occur fairly quickly as we (i.e. MEA) have now paid the fee to the publisher!

NICE are useless.

 

[RogerBlack]

Some will always acquiesce with a corrupt, and unjust system, instead of standing up for what is right.

Some will believe they can they can expend what capital they have fighting in other ways for patients.

Requesting a retraction of a paper by powerful people is not something you do lightly if you're in the field.

At a very minimum, it's several days scrutinising in detail the paper in question, and considering the criticism.

Those who have signed should be thanked.
Those who have not signed but are working in the background also need thanked.
Thanks!

 

[lilpink]

And what about the MEGA team?. They make a point of telling everyone their research will not be another PACE.

Fwiw I personally find it odd that anyone can on the one hand sign this letter and on the other hand still be part of the CMRC and / or support MEGA. It's intellectually dissonant.

 

[keenly]

Some will believe they can they can expend what capital they have fighting in other ways for patients.

Requesting a retraction of a paper by powerful people is not something you do lightly if you're in the field.

At a very minimum, it's several days scrutinising in detail the paper in question, and considering the criticism.

Those who have signed should be thanked.
Those who have not signed but are working in the background also need thanked.
Thanks!

I understand the system. My sister is an NHS nurse. My brother in law has two family members who are on the NHS. I know a sports therapist that treats a very influential pharma rep who deals direct with PCT's and commissioning 'units'.
I have been told a lot of things, and what I say on here is actually holding back significantly.

Lets just say their is an agenda, and the people who make life hell for ME/CFS patients are not incompetent or ignorant. They know exactly what they are doing.

Sickness is a business. Healthy individuals do not benefit the system. Keeping them sick does. Making out it is all in the mind is VERY beneficial for the system, and those serving it. WE have the power, people do not realize it. I shall never bend over for powers that be.

 

[Eian Mcneely]

This is impressive stuff with over 100 signatures…. they deserve the appreciation

 

[Valentijn]

The Americans have come to rescue us Brits again. Why are the British docs still so scared? I do not get it?

Defamation laws in the UK are very draconian. A researcher suggesting that a colleague has failed in a way which makes him unsuitable for his job could easily end up in court, with the presumption that the researcher is guilty of defamation.

At the very least, the critical researcher would have to prove that their colleague did what he was accused of, and that will take time and money just to show up in court. At worst, the researcher will be found guilty of defamation and have to pay the damages determined by the court.

This is why the real critiques are appearing on an American website. The US passed a law specifically to protect Americans from being punished by British defamation laws after a rather nasty case, though it applies to defamation judgements from any foreign court.

 

[Snowdrop]

Keep pressing Sonya Chowdhury. She can hide behind a board for AfME not signing but she personally could sign if she wanted to.

 

[Yogi]

84 commenters. 102 signatories. Let's see if we can match it at 102 to send a clear message about the harm caused by the Pace Trial and it's authors.

 

[Hilary]

@A.B. @Valentijn - thanks for responding to Karla's question on the blog - I was floundering around with my malfunctioning brain trying (and failing) to find appropriate links to give her..

 

[Barry53]

@A.B. @Valentijn - thanks for responding to Karla's question on the blog - I was floundering around with my malfunctioning brain trying (and failing) to find appropriate links to give her..

I was also pondering the recent suggestion by Dr. Ron Davis that pushing through fatigue might be a trigger, but felt it is too tenuous to mention at this very early stage. But the potential dangers of GET cannot be ignored.