Petition: Opposing MEGA

Artstu

Artstu

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Chrisb

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At the risk of possibly falling out with some, I like Phil Hammond's frank admission that he got things wrong in earlier days. Is this the first such admission we have seen. There is nothing much to take exception to. Well done that man.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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batteredoldbook

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Chrisb said:
At the risk of possibly falling out with some, I like Phil Hammond's frank admission that he got things wrong in earlier days. Is this the first such admission we have seen. There is nothing much to take exception to. Well done that man.
Click to expand...

Yeah, I liked that bit a whole lot. That's the kind of straight talking that can start to win back the hearts and minds of patients who've had their ability to trust doctors trashed. However still a problem in regard to PACE - within the context of Private Eye, PACE should fit *right in*. It needs to be in there. (Else I'll cancel my subscription etc etc).

On Twitter I went with the following as a response:

@drphilhammond Re: Medicine Balls 25/11/2016: This much better thank you,but where's PACE? You don't tell conclusions to Pts during a trial!

Private Eye's @drphilhammond has made huge progress understanding M.E but still needs to address PACE debacle. http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-71#post-788947 #pwme

@drphilhammond Until you address PACE you've a contradiction: You call it a sleight that M.E due to faulty beliefs but CBT 4 ME based on it!

"According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)."
PACE - Manual for Therapists COGNITIVE BEHAVIOUR THERAPY for CFS/ME
Burgess/Chalder
 
TiredSam

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batteredoldbook said:
Yeah, I liked that bit a whole lot. That's the kind of straight talking that can start to win back the hearts and minds of patients who've had their ability to trust doctors trashed. However still a problem in regard to PACE - within the context of Private Eye, PACE should fit *right in*. It needs to be in there. (Else I'll cancel my subscription etc etc).

On Twitter I went with the following as a response:

@drphilhammond Re: Medicine Balls 25/11/2016: This much better thank you,but where's PACE? You don't tell conclusions to Pts during a trial!

Private Eye's @drphilhammond has made huge progress understanding M.E but still needs to address PACE debacle. http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-71#post-788947 #pwme

@drphilhammond Until you address PACE you've a contradiction: You call it a sleight that M.E due to faulty beliefs but CBT 4 ME based on it!

"According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)."
PACE - Manual for Therapists COGNITIVE BEHAVIOUR THERAPY for CFS/ME
Burgess/Chalder
Click to expand...
Give the guy a bit of breathing space! This article is a huge step forward, and if it meets with a positive response Private Eye might notice and do something about PACE.
 
trishrhymes

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I think this line from Holgate's reply is significant. Including the fact that he feels the need to remind us of it:

'Finally, I should add that I am not a CFS/M.E. researcher myself but someone who has realised we must make inroads into the causes of this (these) distressing and serious disorders.'

He seems to think he's the appropriate person to chair a group planning a big research project on CFS/ME.

Yet he not only doesn't research ME himself, but he seems not to have even tried to educate himself about current research, or even about what ME actually is.

He seems to be wilfully blind to the gaping chasm between the people he is treating as 'experts' and those doing good bio-medical research.

And he wonders why we're worried.
 
Jo Best

Jo Best

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Chrisb said:
At the risk of possibly falling out with some, I like Phil Hammond's frank admission that he got things wrong in earlier days. Is this the first such admission we have seen. There is nothing much to take exception to. Well done that man.
Click to expand...
In the context of this thread being on the Opposing MEGA petition, and seeing how it's all been playing out in recent years, I see the article as entirely consistent with the move to appearing to embrace the biological aspects of the illness (edit - in the biopsychosocial model). It reminds me of the article on Julia Newton's work on muscle that appeared when CMRC was formed in 2013, giving the impression the CMRC was going to be all geared up for biomedical research. I've no personal dislike of Phil Hammond, I used to enjoy his TV series 'Trust Me I'm a Doctor' and I think he does stand-up comedy. I seem to recall hearing that Private Eye did a piece on Phil Parker threatening to sue someone for saying the Lightning Process hadn't worked (this is all in haste from memory so I'll try to find the sources and edit unless someone else obliges meanwhile) but when the editor was contacted about the SMILE trial (2010 or 2011) there was no reply. Next I heard of Phil Hammond was that he was working at the CFS service. He has had a few tweets in response to his interview with Esther Crawley, and I would view this article in the context of damaging limitation (to his professional reputation and media popularity) and I don't blame him, I'm afraid I just no longer 'trust him as a doctor'.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Jo Best said:
I seem to recall hearing that Private Eye did a piece on Phil Parker threatening to sue someone for saying the Lightning Process hadn't worked (this is all in haste from memory so I'll try to find the sources and edit unless someone else obliges meanwhile)...
Click to expand...

From my ME agenda website, from November 2009:

https://meagenda.wordpress.com/2009...-and-threat-of-legal-action-10-november-2009/

(...)

http://www.meassociation.org.uk/content/view/1063/161/

M.E. and the Lightning Process in ‘Private Eye’

There’s a small item in the latest issue of ‘Private Eye’ about M.E. and the Lightning Process. It’s on page 10 in the ‘Legal News’ section.

It reads:

“M.E. sufferers were stunned recently to receive threatening letters when they posted their views on the ‘Lightning Process’, a programme that allegedly produces ‘amazing results’ for people not only with M.E. but ‘anxiety, panic attack, over-eating, low self-esteem and guilt’ too. When sufferers started reporting they had paid £600 for a course that did not work for them, they received warning of defamation proceedings if they did not recant.”

If anybody has received a letter like that, we would be interested in seeing a copy.​

[MEA report ends]

(Ed: Private Eye, Issue: 1248, 30 October 2009)

---------------

Today, [10 November, 2009] the Times has published a piece by John Kampfner, Chief executive of Index on Censorship and author of Freedom for Sale.

Mr Kampfner writes, “One man who runs a patients’ website was threatened with legal action by a drugs company after posting a comment that a treatment he had tried for ME had not worked. He had to take down his observation.”​

Readers who are ME patients or carers of ME patients and have received threats of legal action from any source following complaints about therapies, training programmes, treatments or pharmaceuticals are invited to contact ME agenda, in confidence.

(Ed: No-one did contact me, and my understanding is that no-one contacted the MEA, either.)

Times | 10 November 2009

Times Link: http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article6910168.ece

The laws that stain Britain’s good name

Libel tourism isn’t just a matter for the media elite. Freedom of speech for everyone is in danger

by John Kampfner

Full article can also be read here on Index on Censorship

Link: http://www.indexoncensorship.org/2009/11/libel-reform-the-laws-that-stain-britains-good-name/

The report can be downloaded at: http://www.libelreform.org/our-report

“The Libel Reform coalition brings together English PEN Index on Censorship and our partner organisation Sense About Science to campaign to reform the libel laws of England and Wales.”

Supporters of Libel Reform include:

Ian Hislop, Editor Private Eye
Alan Rusbridger, Editor, The Guardian
Peter Wright, Editor, Mail on Sunday
Ben Goldacre, Columnist, The Guardian, “Bad Science” Blog

--------------------------------------------

At the time, I had some exchanges with John Kampfner over whether the two reports concerned the same individual; what evidence there was that more than one person had allegedly received threats of legal action and that since Phil Parker was not a "drugs company", whether Kampfner's report referred to an unrelated alleged case. These exchanges are on my old laptop and I can't pull them up right now to review his response.

Of the claims made in the Private Eye article, Phil Parker wrote the following in his book:
An Introduction to the Lightning Process®: The First Steps to Getting Well

https://books.google.co.uk/books?id=Q9Vqesa6xVQC&pg=PA200&lpg=PA200&dq=private eye ME/CFS article&source=bl&ots=3obvTJCWrS&sig=boafYGmLv8mrdABtL8GHCULaXw0&hl=en&sa=X&ved=0ahUKEwj45qPfpsLQAhUELcAKHY60AgA4ChDoAQgsMAM#v=onepage&q=private eye ME/CFS article&f=false

So, two reports: the first in Private Eye alleging “M.E. sufferers were stunned recently to receive threatening letters when they posted their views on the ‘Lightning Process....they received warning of defamation proceedings if they did not recant.”

The other a couple of weeks later, from John Kampfner (Times 10.11.09), within an article launching a report published by the Libel Reform Coalition (supporters include Private Eye's Ian Hislop) of an alleged threat of legal action against one individual from a "drugs company after posting a comment that a treatment he had tried for ME had not worked" and a request for a take down.

And a denial from Parker, himself, as set out on Page 200 of his book.

Note that my ME agenda site is no longer updated, as I opened another site (Dx Revision Watch) in 2010 to focus on the revisions of DSM-IV and ICD-10.
 
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