worldbackwards
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Oh, the excitement.Oh but they can't resist the occasional peek, thrill-seekers that they are
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Oh, the excitement.Oh but they can't resist the occasional peek, thrill-seekers that they are
Ha! Easiest fiver I ever made .I'll take the bet. Surely "... was forced to close his Twitter account" is now being added to the body of 'evidence'.
Ha! Easiest fiver I ever made .
Ask me how I knew that was going to happen . Go on, ask me ...
Because it's exactly what Ellen Goudsmit did when she was on here a while ago. She was posting here, and at the same time making disparaging remarks about us (PR) on twitter. When she got called out on it she instantly blocked her twitter account so we couldn't read what she was saying about us. After a few hours she realised that nobody else could view her twitter account either, and as it was so important to her that the world had access to her tweets she had to re-open her account to all, and delete some of the tweets she'd made about us.Oh ..... bottoms!
Go on, then. How did you know, smarty-pants?
There is indeed an irony in how this mass hysteria, sorry I mean psychogenic conversion disorder, is spreading through QMUL and associates, as they all fall victim to a threat that isn't actually there, ie the young male sociopathic ME activist.
Because it's exactly what Ellen Goudsmit did when she was on here a while ago. She was posting here, and at the same time making disparaging remarks about us (PR) on twitter. When she got called out on it she instantly blocked her twitter account so we couldn't read what she was saying about us. After a few hours she realised that nobody else could view her twitter account either, and as it was so important to her that the world had access to her tweets she had to re-open her account to all, and delete some of the tweets she'd made about us.
Do members of the council know why patients and academics are unhappy; has QMULs management asked sufficient questions about the trial and the issues to justify spending 200k + vat on lawyers fees. Given the outcome of the tribunal I suspect not. I think that this should also have flagged up the overall issue of the trial with QMULs senior management and they should have looked more into the integrity of the way the trial has been conducted. QMUL as an institution is responsible.
The Centre for Welfare Reform said:What we do
The Centre shares good ideas to make human rights real.
We do this by supporting an international fellowship to develop their ideas with others and publish them through our library andstore.
We receive no subsidies from government or private organisations, instead we work on projects and publications which are consistent with our goal.
The Centre for Welfare Reform said:Who we are
The Centre for Welfare Reform is a community of independent Fellows who are thinkers, innovators and leaders who have demonstrated a real commitment to equality and diversity.
The Centre for Welfare Reform said:Simon Duffy
Simon is the founder and Director of the Centre for Welfare Reform. He speaks regularly on television and radio about the welfare state and social policy. He is best known for inventing personal budgets and for designing systems of self-directed support. He works as a consultant and researcher with local social innovators and national governments.
Simon began work in the NHS and then went to work with Choice Support, where he led innovative work in social care on individualised funding and brokerage. After being a Harkness Fellow in 1994, Simon went on to found Inclusion Glasgow in 1996 and, following this, he helped establish several new organisations in Scotland, including Partners for Inclusion and Altrum. He also provided training in person-centred planning and supported living as a Director of Paradigm Consultancy.
From 1999 he began to develop self-directed support, as a system to reform the organisation of social care. He began work with North Lanarkshire Council and in 2003 he led the development of individual budgets and self-directed support in England as CEO of In Control. This work led to significant changes in social policy in England and Scotland, and in 2008 he was awarded RSA's Prince Albert Medal, and in 2011 the SPA Award for outstanding contribution to social policy.
Simon has a doctorate in moral philosophy and has written extensively on moral, political and social issues. Some of his key publications include Unlocking the Imagination (1996), Keys to Citizenship (2003) Women at the Centre (2011) A Fair Income (2011) and Peer Power (2012) and The Unmaking of Man (2013). Simon is also an Honorary Senior Research Fellow at the University of Birmingham's Health Service Management Centre.
Follow Simon on twitter here.
Oh, I see, I've no idea what sort of relationship they have with the general media and politicians etc. As far as I'm aware, they may not have an enormous amount of influence, which is a shame, but that's probably to do with resources rather than reliability.I am not English, and can't quite grasp what their position is as a source for politicians/researchers/journalists etc.
Actually, the author is George Faulkner, who wrote the report discussed in the other thread that i linked to above.I had a look at their web site earlier, but had not spotted the info on Mr. Duffy. I take it he is the one who wrote the article? (It isn't signed, as far as I can see).
Because it's exactly what Ellen Goudsmit did when she was on here a while ago. She was posting here, and at the same time making disparaging remarks about us (PR) on twitter. When she got called out on it she instantly blocked her twitter account so we couldn't read what she was saying about us. After a few hours she realised that nobody else could view her twitter account either, and as it was so important to her that the world had access to her tweets she had to re-open her account to all, and delete some of the tweets she'd made about us.
Co-Cure used to be a forum for adult and intelligent discussion on ME and CFS. Recently, I submitted something to correct misleading information and it wasn't posted. If Co-Cure has been taken over by those who don't care that much about accuracy, then it's a huge loss to patients and researchers. it's become yet another site run by angry people whose emotions dictate what we should know. I don't wish to be misled and manipulated. I can't argue against the lack of attention to detail and influence of politics in the PACE trial etc if patient fora do the same thing. Phoenix Rising allowed the bullies quite a lot of space. I saw a fair amount of misinformation. so that's two patient resources where accuracy is not valued. We deserve better.
I can't argue against the lack of attention to detail and influence of politics in the PACE trial etc if patient fora do the same thing.
I have just seen an accusation regarding a message that was submitted to Co-Cure not being posted.
Just to clarify that neither Tate, Charles or I can see submitted messages (so we can not approve them). We were given the power to approve our own messages a number of years ago (I didn't want to be a moderator at that time due to my other responsibilities).
Tom
What was PACE really about? It clearly has a deeply personal quality that has everyone involved feeling pain on being subject to normal scrutiny.