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

D

Dolphin

Senior Member
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J

John Mac

Senior Member
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321
Location
Liverpool UK
Snowdrop said:
I thought he might be related to Steven Lubet lawyer and author on ME in the faculty lounge.
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Steve Lubet posted about the letter on the faculty lounge today.

http://www.thefacultylounge.org/

It's near the bottom of the page


An open letter to Psychological Medicine about “recovery” and the PACE trial
This open letter, posted today on the Virology Blog, calls on the UK journal Psychological Medicine to retract an article by the PACE team, in which they claimed to have achieved a 22% ME/CFS recovery rate using CBT and GET.

Here is the concluding paragraph:

Therefore, we are asking Psychological Medicine to retract the paper immediately. Patients and clinicians deserve and expect accurate and unbiased information on which to base their treatment decisions. We urge you to take action without further delay.

Citing numerous flaws in the study, many of which I have detailed in earlier posts, the open letter is signed by virtually every leading ME/CFS researcher in the U.S. and Canada.
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Countrygirl

Countrygirl

Senior Member
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UK
Meanwhile back at the ranch: PACE reigns supreme.................information to be disseminated to the medical profession by White and co

ME/CFS is listed as a FSS and behavioural techniques are to be adopted along with GET and CBT.
(Can't locate an exact date but is recent.)



upload_2017-3-21_7-39-16.png
 
Y

Yogi

Senior Member
Messages
1,132
Yogi said:
[


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?
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@charles shepherd I appreciate you are very busy and may have missed it but was wondering if you could please provide your advice on doctors who advise GET who are now fully aware of the risks and harm and 2. the ethics for doctors who are aware of it and in not speaking out about the harm to patients and the duty of candour imposed on doctors by GMC??

Thanks in advance of your response
 
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Y

Yogi

Senior Member
Messages
1,132
Yogi said:
And their little side kick sibling AYME.

https://autodidactauthor.wordpress....ls-forbidden-fruit-ayme-make-final-statement/

Remember PACE trial was done with AFME's help.

All the smart and informed people knew that AFME and AYME are lobby groups for the bps school and wessely, sharpe, white posing as ME charities. Why does anyone still support these FAKE charities is beyond me? We need to ensure that no ME patients are duped into supporting FAKE charities. We need to take them down as well as Pace trial. Drain that swamp once and for all!!.

I don't want and we do not need FAKE BPS lobby groups help. PACE is coming down with or without FAKE and crooked charity/ bps lobby groups help.

It is good if they stood aside for all to see them in their true colours.

Thanks to Anton for asking . This post is not intended at you.

https://twitter.com/i/web/status/841317398204542977

InActionforME responded:

https://twitter.com/i/web/status/841326584233635840

Obviously you are a FAKE charity who are colluding with all the corrupt psychiatrists and good on them for not asking you.

Response thanks to Anton Mayer!

https://twitter.com/i/web/status/841327140238958592

InActionforME responded:

https://twitter.com/i/web/status/841330341046542336


"so if they want us to they can email sonya@actionforme.org.uk"

No, we or all these terrific scientists, doctors and real charities and Dr David Tuller and Dr Racaniello do not want your FAKE corrupt charities help and we dont need to beg InActionforME and CROOKED Sonya to sign.
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Update on InActionforME

https://twitter.com/i/web/status/844577628057165825
 
U

user9876

Senior Member
Messages
4,556
Yogi said:
Drum roll please,.......................

https://twitter.com/i/web/status/844585400660381697


:p:p:p:p:p

Does Bristol not have phone network or email? Anyone here from Bristol?

Thanks for proving that you are A FAKE CHARITY!
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There is of course a reason that they weren't asked. Because they probably wouldn't sign. Or perhaps who ever organized it would be concerned they would leak it to White and Wessely who would try to pressure people not to sign.

With the addition of board members from AYME they will be even more supportive of PACE. Such action should have been led by patient charities it should not be for patients to drag charities along.
 
Kati

Kati

Patient in training
Messages
5,497
user9876 said:
There is of course a reason that they weren't asked. Because they probably wouldn't sign. Or perhaps who ever organized it would be concerned they would leak it to White and Wessely who would try to pressure people not to sign.

With the addition of board members from AYME they will be even more supportive of PACE. Such action should have been led by patient charities it should not be for patients to drag charities along.
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They actually were asked a week or so ago, and they were supposed to have a board meeting the following week. They seem to dodge the awkwardness of the situation by now saying their next board meeting is in April. By then very few if anybody will remember to follow-up with them about the issue.
 
Molly98

Molly98

Senior Member
Messages
576
Wondering if any of the other organizations who signed the letter needed a board meeting?

Or is AFME The only ME organization to not know where it stands on this issue that has been most prominent and important to ME sufferers for years.

Imobalised by its conflict of interests between the interests of researchers it serves and supports and the interests of patients it claims to serve and support.

I wonder if it will be in breach of its charitable duties. It must have had founding documents on which it was given charitable status. How can you claim to be a charity acting on behalf of the welfare and interest of ME sufferers and then act to support and protect those causing harm to the ones your charity was set up to support.

Do charities have to declare conflicts of interests, I would have thought so, laws around charities are strict in UK.

If they refuse to sign, or continue to avoid then a joint letter signed by 100's of ME patients to the charities commission to complain that it is not working in the interests of the community it was set up to serve may be needed.
 
Molly98

Molly98

Senior Member
Messages
576
AndyPR said:
http://apps.charitycommission.gov.u...teredCharityNumber=1036419&SubsidiaryNumber=0

From http://apps.charitycommission.gov.uk/SIR/ENDS19/0001036419_SIR_20110331_E.PDF
View attachment 20048
View attachment 20049
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AndyPR said:
http://apps.charitycommission.gov.u...teredCharityNumber=1036419&SubsidiaryNumber=0

From http://apps.charitycommission.gov.uk/SIR/ENDS19/0001036419_SIR_20110331_E.PDF
View attachment 20048
View attachment 20049
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Nice one @AndyPR .

I think reading this there are grounds for complaint if the conflicts of interest within AFME are interfering with the charitable aims and who the charity is set up to benefit.

I think that a letter from ME suffers to AFME stating our concerns and signed by as many as possible may be the first step.
It is after all fundraising on the basis of these aims.

Personally, I feel by not taking a proactive stance against GET which has so many reported harms and by not asking for the retraction PACE it is controverting what it has stated are its aims as a Charity.

This is not an issue you can sit on the fence over. You either act in the interests of those you are set up to serve and support and sign the letter or you act against the interest of those you were set up to support and don't.

Inaction speaks volumes.
Signing should not be a dilemma for any ME organisation, it is a no-brainer.
 
Y

Yogi

Senior Member
Messages
1,132
user9876 said:
There is of course a reason that they weren't asked. Because they probably wouldn't sign. Or perhaps who ever organized it would be concerned they would leak it to White and Wessely who would try to pressure people not to sign.

With the addition of board members from AYME they will be even more supportive of PACE. Such action should have been led by patient charities it should not be for patients to drag charities along.
Click to expand...

Absolutely.

They weren't asked because as you say they would have leaked to White et al. who would have pressured others not to sign.

I don't give a crap whether they sign or not. But this is showing InActionfor ME's true colours. A psychosocial lobby group posing as a ME charity .
 
Y

Yogi

Senior Member
Messages
1,132
Molly98 said:
Nice one @AndyPR .

I think reading this there are grounds for complaint if the conflicts of interest within AFME are interfering with the charitable aims and who the charity is set up to benefit.

I think that a letter from ME suffers to AFME stating our concerns and signed by as many as possible may be the first step.
It is after all fundraising on the basis of these aims.

Personally, I feel by not taking a proactive stance against GET which has so many reported harms and by not asking for the retraction PACE it is controverting what it has stated are its aims as a Charity.

This is not an issue you can sit on the fence over. You either act in the interests of those you are set up to serve and support and sign the letter or you act against the interest of those you were set up to support and don't.

Inaction speaks volumes.
Signing should not be a dilemma for any ME organisation, it is a no-brainer.
Click to expand...


If you or anyone could look into this that would be very helpful. I am unable to do so at this point in time. It would be good to put a strong case together for the Charity Commission to investigate Inaction for ME and hopefully shut it down.

I really feel sorry for the people who fundraise for it by going on runs and doing coffee mornings etc. They need to know about IFME and the damage they are doing to the ME community.

IFME are a major elephant in the room that needs to be addressed.
 
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Cheshire

Cheshire

Senior Member
Messages
1,129
An open letter to Psychological Medicine, again!

Last week, Virology Blog posted an open letter to the editors of Psychological Medicine. The letter called on them to retract the misleading findings that participants in the PACE trial for ME/CFS had “recovered” from cognitive behavior therapy and graded exercise therapy. More than 100 scientists, clinicians, other experts and patient organizations signed the letter.

Three days later, I received a response from Sir Robin Murray, the UK editor of Psychological Medicine. Here’s what he wrote
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http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/
 
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A

AndyPR

Senior Member
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Guiding the lifeboats to safer waters.
Virology Blog said:
In response to the comments from Psychological Medicine, we are reposting the open letter with 16 added individuals and 23 more organizations, for a total of 140 signatories altogether. These include two lawyers from Queen Mary University of London, the academic home of lead PACE investigator Peter White, along with other experts and ME/CFS patient groups from around the world.
Click to expand...
:D:D
 
Countrygirl

Countrygirl

Senior Member
Messages
5,473
Location
UK
Action for ME still not listed of course despite the addition of several new groups.

Is it time that the patients and the charity finalised their divorce at long last?

Adultery with the PACE researchers would be deemed sufficient grounds.

The MEA could be awarded custody of the members.
 
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