PACE trial commentary in JHP from Dr Charles Shepherd, ME Association

[Large Donner]

The big question is what to do next ..

That is a really good question, worthy of some thought.

Should we fly a banner over the Emirates Stadium saying, "Horton out?"

 

[alex3619]

I whfjjt to [lhasfd pretlhld to say slhlhthing imlhlkhant lhlhlhle salh7[g noty6rfg b utjfvhjfv y int ernjhgvjhvet isjhvfk ing up. slshg I hopjhvcfjay more soojhvfcjhawlah

Its the oldest phone trick in Hollywood.

 

[Barry53]

Would a formal complaint to the Health Research Authority be applicable/relevant to PACE? I do not understand the lines of responsibility/authority involved, so do not know if the HRA would be the right body to make a formal complaint to. But there must be a relevant official body to make such a complaint to surely?

Even if it were felt the outcome might be a biased forgone conclusion, the very act of registering such a complaint, and its formal response, would seem worthy of entering into the public audit trail, and of people realising it were there for future reference. And if necessary escalate such a complaint to the relevant ombudsman if need be, again for the same reasons.

Any thoughts anyone?

 

[Stewart]

Thank you for your message.
My iphone has died unexpectedly.
I am currently travelling, and so I will not be able to reply to your message as quickly as I would have wished.
Please be patient.
As soon as I have a new iphone, normal service will be resumed.
Don't let anyone ever tell you that technology is a solution for health. Technology fails.

Travel safely,
Richard

Is it just me, or does Richard Horton's automated reply read like one of those 'stranded traveller' email scams?

"Thank you for your message. I am currently travelling and my iphone has died unexpectedly so I am unable to offer direction to the rest of the Lancet's editorial team.

Please urgently send me a loan via Western Union so I can buy a replacement and get back to ensuring the journal I edit maintains its' reputation for withdrawing questionable research papers in a timely manner (by which I mean 'whenever hell freezes over').

Please let me know when you have transferred the monies.

Travel safely,

Richard"

 

[charles shepherd]

That is a really good question, worthy of some thought.

A number of options are being discussed at the moment

Probably best if I do not place them in the public domain right now

But suggestions are welcome…

CS

 

[arewenearlythereyet]

Trading standards? On the basis that we pay for the NHS via our taxes?

Certainly if this was the food industry it would be a product withdrawal based on Misleading health claims?
If the supplier or retailer doesn't spot the mistake themselves, the public can bring it to trading standards attention and they can enforce one.

How does this work for medical advice that has an impact on public health?

 

[Large Donner]

Can we write to the Royal Society of GPs pointing out all the now published critiques of the PACE trial and ask them if they are willing to take upon themselves all the liabilities for harms caused to people who are prescribed the NICE treatments by themselves? Are they willing to request that the Lancet review their position on the PACE trial?

 

[NelliePledge]

https://publicationethics.org/
https://publicationethics.org/files/Code of Conduct_2.pdf

the Lancet state on their website that they adhere to the Committee of Public Ethics code of practice for journal editors

 

[NelliePledge]

insomnia browsing tonight Im pretty new to ME so nearly all infomation is new to me

this article looks interesting indication that there are concerns in the US about misleading results being published
http://retractionwatch.com/2017/04/...ctices-calls-new-body-help-tackle-misconduct/

 

[Esther12]

We're in a 'who watches the watchmen' situation. Almost every organisation in UK medicine who should be speaking out on this is tied to the scandal in ways which mean that they want to ignore it. And then there are all the personal conections and loyalty that make the UK establishment so grubby.

 

[Snow Leopard]

The trust of patients has been lost.

The medical profession must start listening to people with myalgic encephalomyelitis/chronic fatigue syndrome if trust is going to be restored.

I'm glad you were so explicit and to the point on this.

 

[slysaint]

Watched a documentary on BBC2 last night about tackling obesity, and mostly the prejudice in the NHS..
This is the Independents review of the program (the link is also to a review of car-share!):
http://www.independent.co.uk/arts-e...-bbc2-peter-kays-car-share-bbc1-a7676921.html

What struck me was when she (Prof. Rachel Batterham) tackled a group of CCG's about the issue of bariatric surgery they had to admit their ignorance and that most GPs also had no real understanding of the procedure and the longterm benefits.
These are the people who now control the money for NHS services, and more.

This is the NHSCC response to the DWPs Work, Health and disability paper:
https://445oon4dhpii7gjvs2jih81q-wp...-DH-DWP-green-paper-with-appendices-FINAL.pdf (page 51 there's a list of email addresses)

Maybe if they (the CCGs) were made aware (or better aware) of the whole situation?.......

 

[charles shepherd]

Can we write to the Royal Society of GPs pointing out all the now published critiques of the PACE trial and ask them if they are willing to take upon themselves all the liabilities for harms caused to people who are prescribed the NICE treatments by themselves? Are they willing to request that the Lancet review their position on the PACE trial?

The Countess of Mar is currently in correspondence with the RCGP to try and set up a meeting at the House of Lords - mainly to discuss GP medical education and ME/CFS and GP attitudes to patients with ME/CFS

We can certainly discuss PACE if a meeting occurs

But I think it will be a real uphill struggle to persuade the RCGP (or any other Royal College) to criticise the PACE trial in public or in private

CS

 

[lilpink]

the Lancet state on their website that they adhere to the Committee of Public Ethics code of practice for journal editors

It's worth a try, but I don't think we can assume that COPE aren't in on this too, the industry is effectively regulating itself. Similar perhaps to the problems of self-regulation with respect to the Press Complaints Commission that came to light with the Leveson Inquiry. If COPE can't or won't actually enforce their guidelines then those guidelines aren't worth the paper they're written on.

 

[Binkie4]

A number of options are being discussed at the moment

Probably best if I do not place them in the public domain right now

But suggestions are welcome…

CS

http://www.rcpsych.ac.uk/pdf/PS01_2017.pdf

I have been amazed that the President of the Royal College of Psychiatrist and other members have been able to act as they have without breaching the ethical standards of their College.
Are SW and the PACE researchers just too powerful to have the usual rules applied to them? Conflicts of interest come to mind.



"Clinical – these can include situations where a psychiatrist has been involved in developing a particular treatment and when they might experience a conflict in recommending rival treatments. .........."

"Beliefs/values – a competing interest can also include a psy- chiatrist’s deeply held beliefs, which could potentially influence a decision or be perceived as doing so by others."

 

[trishrhymes]

A number of options are being discussed at the moment

Probably best if I do not place them in the public domain right now

But suggestions are welcome…

CS

I note that dubious practices claiming success with treating ME/CFS such as the Lightning Process and the Chrysalis Effect have been sanctioned (told to stop) for advertising, though the latter appears still to be doing so.

I wonder whether the touting of unproven IAPT, MUS psychological treatments to clinical commissioning groups are also in breach of ASA guidelines.

 

[Sidereal]

Broken iPhone LMAO

 

[TiredSam]

This is the Independents review of the program (the link is also to a review of car-share!):
http://www.independent.co.uk/arts-e...-bbc2-peter-kays-car-share-bbc1-a7676921.html

The words came from the over-active gob of Daily Mail columnist, former Conservative spin doctor and professional “Glenda Slag” style controversialist Amanda Platell.

What a fantastic piece of vitriol, right up my street.

 

[Large Donner]

But I think it will be a real uphill struggle to persuade the RCGP (or any other Royal College) to criticise the PACE trial in public or in private

CS

Then let it be on the record that they were given the chance and neglected to do so by offering them the opportunity regardless?

 

[Esther12]

Then let it be on the record that they were given the chance and neglected to do so by offering them the opportunity regardless?

Yes, it can be good to raise concerns just as a way of building up evidence of how badly people have behave in response to concerns.