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

[Yogi]

A press release is also being prepared on this:

An open letter to Psychological Medicine about “recovery” and the PACE trial


List of UK health professionals and scientists who have signed:

Dr Simon Duffy

Professor Jonathan Edwards

Dr Keith Geraghty

Dr Ian Gibson

Dr Ellen Goudsmit

Dr Eliana Lacerda

Profesor Malcolm Hooper

Dr Charles Shepherd

Dr Tony Ward

Dr William Weir

CS

Thanks to all the uk signatories but that is not enough from the UK medical professional.
Why are the British being such cowards and expecting the Americans to do all the heavy lifting.

Let us not forget The PACE trial was planned, executed and funded in the UK.

We need more UK doctors to sign this. There are 1 million people in the NHS and more of them should step out of the shadows. Dr @Jonathan Edwards stated previously that only those retired from the NHS felt able to stand up for ME patients due to career risk. I understand that UK clinicians were afraid putting their heads above the parapet due to the reign of terror of Sir Simon but they now need to step forward and stop being so afraid of Sir Simon wessely.

Where is Abhijit Chaudhuri the ME association advisor @charles shepherd?.He had been very vocal and stood up for ME patients in the early 2000s but then became quiet. What is his position on the PACE trial and CBT and GET -is he for or against? Can you please get more UK doctors to sign?

 

[Hilary]

I agree with Sasha that we all need to thank these great scientists who have helped us by logging on virology and leaving a comment of thanks.

Done - so grateful to them for keeping on at it

 

[AndyPR]

Also of note that Action for ME aren't on that list of signatories, not that I'm surprised by that.

ETA: I've shared it to their Facebook page, asking them to add their name to the list...

 

[Esther12]

A little disappointed that no researcher from Germany signed, my hope is that they weren't asked or didn't know but that's hard to believe.

It wouldn't surprise me at all if lots of people who would have signed were not asked. Things like this can end up being a bit haphazard. I suspect Tuller would be happy to build up a list of further signatories to release at some future point? That's what happened with the last open letter anyway, so it could be worth making potential signatories aware of it and encouraging them to add their name? (This is all just my guess-work, rather than being based on insider information).

 

[A.B.]

Post more comments on the virology blog! Tuller said it helps.

Don't worry too much about formalities. Just speak your mind like you do here on the forums.

 

[Gijs]

Very impressive letter, thank you all !

PS: I think this PACE recovery paper will not be retracted because the editor of Psychological Medicine has a disease called ''intellectual laziness''.

 

[alex3619]

I am worried I will pay for it later, but I had a workout reading this. I did far too much chuckling.

 

[Cheesus]

I am worried I will pay for it later, but I had a workout reading this. I did far too much chuckling.

Sounds totally worth it.

 

[Dolphin]

http://www.centreforwelfarereform.org/news/call-for-ret-publication/00320.html

 

[Snowdrop]

As mentioned, no surprise that AfME were not among the signatories. Wherever their funding comes from I hope it dries up soon.

I don't think the BPS people loose sleep over PACE much. I understand why we might think/hope for that but they have been well rewarded and they are still protected. Any retraction if it comes will take a long time to unwind to a conclusion I think. Or not. Maybe we all wake up tomorrow and the world has changed.

A few names that I did not see that I think might have been willing to sign are Carmen Scheibenbogen (Germany), Gordon Broderick (Canada), Clare Valverde, (Catalonia Spain)

These days I don't get excited about anything anymore. Not that I don't have hope--I do. I just can't attach my hope to anything. Who knows what will happen. I am very grateful to the people who worked hard to put this out there and I hope that it does put pressure on the powers of authority that have been allowed to play fast and loose with our lives.

 

[SilverbladeTE]

Psychological Medicine

hahahahahaha

Quacks. Pharma shills.

You rate them too highly, I think

 

[alex3619]

My comment (I needed a nap before I could write one):

I want everyone who contributed to this open letter to know that I am grateful. I suspect the patient community will be discussing this for quite a while.

This is not just a message of good job well done. You have brought hope to patients. You have bolstered confidence in the scientific process. You have demonstrated that scientists, doctors and academics will stand up and decry poor quality science, even when most of medicine is silent at best.

 

[charles shepherd]

I wasn't involved in chasing up docs etc who might be willing to sign this letter

But I was involved in suggesting a number of UK (and overseas) doctors who might be willing to sign

I know that there are doctors who are in agreement with the letter but, for various professional reasons, felt unable to sign the actual letter

CS

 

[BurnA]

I know that there are doctors who are in agreement with the letter but, for various professional reasons, felt unable to sign the actual letter

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.

 

[Binkie4]

"Also of note that Action for ME aren't on that list of signatories, not that I'm surprised by that.

ETA: I've shared it to their Facebook page, asking them to add their name to the list..."

@AndyPR


Just read on AfME fb page a response to above saying that they weren't invited to sign. Could someone arrange for a late signature? Don't want them to have that excuse.

 

[trishrhymes]

Brilliant letter, fantastic list of signatories. I hope it will be brought to the attention of the NICE guidelines people who are reconsidering the guidelines for ME.

 

[charles shepherd]

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.

No - I did mean professional reasons

In all the cases that I am aware of a colleague decided not to sign for what are best described as professional reasons

CS

 

[charles shepherd]

Brilliant letter, fantastic list of signatories. I hope it will be brought to the attention of the NICE guidelines people who are reconsidering the guidelines for ME.

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!

 

[Yogi]

[

I wasn't involved in chasing up docs etc who might be willing to sign this letter

But I was involved in suggesting a number of UK (and overseas) doctors who might be willing to sign

I know that there are doctors who are in agreement with the letter but, for various professional reasons, felt unable to sign the actual letter

CS

Thanks for your response.

I understand they get paid by the NHS and government and have mortgages and bills to pay.

Doctors have a duty under the GMC rules to stand up for harm being done to patients. The government and GMC also has a new duty of candour imposed on doctors. In fact if doctors are in agreement but do not speak out they are in breach of duty.

http://www.gmc-uk.org/guidance/ethical_guidance/27233.asp

I note Abhijit Chaudhuri in his clinic advises of CBT and GET as per NICE but previously was fiercely opposed to it. If even the MEA medical advisor who is a neurologist can not come out now when will they stand up to the harms being done to patients?? Never?

Now is the time for all these docs to come out of the shadows as patients have left to be abused by the wessely school for 30 years and to fend for themselves. We cannot just expect retired and private British doctors to speak out. The americans have shown the emporer Sir Simon Wessely has been running around stark naked causing untold harm to patients.

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

 

[Yogi]

Very timely article.

https://twitter.com/i/web/status/841273721226690564

https://www.theguardian.com/higher-...arch-academic-misconduct-solutions?CMP=twt_gu

And how appropriate it is that when these psychs were being clever coming up with the PACE acronym they didn't foresee how fitting it would be .

PACE ACT 1984/Police and Criminal Evidence Act 1984

http://www.legislation.gov.uk/ukpga/1984/60/contents

......Will be useful in due course. In the mean time we can watch them suffer as they caused us to suffer for decades. Retweet this article with #PACEtral to draw attention to the Guardian and wider public.

https://twitter.com/i/web/status/841343614265495552