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"Interdisciplinary Social Action" by Leonard Jason et al. on ME, CFS, etc.

Dolphin

Senior Member
Messages
17,567

C51umwCXMAUkYL6.jpg large.jpg


I didn't realise but the left half of this image refers to an actual event that is happening this month. See:
https://www.eventbrite.co.uk/e/standing-up-for-science-a-panel-discussion-tickets-32226341856

https-%2F%2Fcdn.evbuc.com%2Fimages%2F28785733%2F134672936453%2F1%2Foriginal.jpg
 
Last edited:
Messages
2,087

This is organised by sense about science,
This is what one of their people said to @JohntheJack - details here

'We haven’t had a position on the PACE trial. It was a trial, it turned out to be flawed in its design.'

How can they ask SW to participate in this given his statements that PACE was a thing of beauty.

I think we should be asking SAS some more questions.
 
Messages
2,125
"
Join three previous John Maddox Prize winners - Dr David Robert Grimes, Professor Elizabeth Loftus, Professor Sir Simon Wessely - and award-winning science journalist Natasha Loder as they discuss their experiences of overcoming adversity to talk about evidence. The discussion is chaired by Tracey Brown, managing director of Sense about Science.

Venue: Lecture theatre LG02, Professor Stuart Hall Building, Goldsmiths University of London

Date: Wednesday 29th March Time: 7.00pm - 9.00pm

General Admission Price: £8 (incl. wine reception)"

At least they get a glass of wine.
 

user9876

Senior Member
Messages
4,556
This is organised by sense about science,
This is what one of their people said to @JohntheJack - details here

'We haven’t had a position on the PACE trial. It was a trial, it turned out to be flawed in its design.'

How can they ask SW to participate in this given his statements that PACE was a thing of beauty.

I think we should be asking SAS some more questions.

Seems like another occasion where sense against science can promote outcome switching as acceptable when their friends do it but otherwise not as with their all trial (apart from ones run by their friends) campaign.

We know that the SAS campaign person (Sile Lane i think?) signed up to stigmatizing patients because asking questions and using FoI to get data is harassment in their eyes. Of course we now know why they were so keen to hide the (PACE) data.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
You wonder why at this point SW wouldn't simply decline the offer to repeat this drivel. It must be quite tiresome by now and he knows that the cat is out of the bag and that it's not his made up/imaginary/fake/fantasy narrative out in the wild now. I guess he signed up for life.
 

user9876

Senior Member
Messages
4,556
You wonder why at this point SW wouldn't simply decline the offer to repeat this drivel. It must be quite tiresome by now and he knows that the cat is out of the bag and that it's not his made up/imaginary/fake/fantasy narrative out in the wild now. I guess he signed up for life.

His career is build on this approach so he can't shut up. I did wonder if he would start talking about fake patients spreading bad stories. But then I realized his entire approach is to call patients fake.
 

Sean

Senior Member
Messages
7,378
Wessely loves the sound of his own voice way too much to ever be able to voluntarily shut up.

Will Sense About Science give the targets of Wessely's relentless smears the right of reply?

Or are we such lowlifes that even that fundamental principle of justice is denied us?
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
For some additional context, for those who haven't already seen it:

http://bit.ly/1vSRhOI

BEHIND THE SCENES:
SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)
A new Report from Tymes Trust


31 August 2014

Includes extracts from exchanges obtained under FOI that took place prior to the setting up of the UK CFS/ME Research Collaborative (UK CMRC, with references to Science Media Centre involvement, Fiona Fox and Support4rs.

http://www.support4rs.com/about-us/

(currently undergoing maintenance)

Company is risk management outfit. Some pages can be viewed via webcache

http://webcache.googleusercontent.com/search?q=cache:http://www.support4rs.com/about-us/

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

Jane Colby document attached in PDF format

Extract

Quotes 15-18 are taken directly from this meeting's records in the email of 1st February.

• (quote 15)

Current situation

Coming out’ about the harassment has led to increased support for CFS/ME
researchers, for example, from colleagues who were not aware of the situation.

• (quote 16)

Harassment

- Harassment is most damaging in the form of vexatious FOIs.
- Complaints are also causing problems. Researchers are still dealing with complaints
about them to the GMC.
- House of Lords Debates on CFS/ME can result in Parliamentary Questions which often
require detailed responses

• (quote 17)
.....
researchers are using strategies to reduce the impact of harassment and put
the case for research into CFS/ME including

Learning about the FOI Act and using strategies to reduce time spent responding, eg
putting minutes of meetings online

- Coming together as a research community to respond to criticisms eg the joint letter in
response to criticisms of Simon Wessely receiving the John Maddox prize.
- Working with trusted journalists to cover the problems associated with CFS/ME research
- Esther Crawley and Stephen Holgate are establishing a research collaborative including
researchers, charities and other interested parties. There will be a launch event on 22nd April.

•(quote 18)

from Action Points

- SMC
– run FOI Act brainstorm

- ALL
– look for opportunities to publicise CFS/ME research and give background
information about the condition

- Support4rs

– work with Peter White and Simon Wessely to develop resources for dealing with harassment

- SMC
– run a press briefing on biosocial illness to improve public understanding.
Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris
 

Attachments

  • Behind the Scenes - Research Collaborative.pdf
    104.3 KB · Views: 6