Tom Kindlon
Senior Member
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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The full fee is US$2900 but I think they bargained that down to US$2000.How much would open access have cost @Tom Kindlon ?
Thanks. So what is the protocol, is this something that the MEA has done "on behalf of" the authors? I ask as it could be something to consider in the future, if we have another study that would be useful if it was open access then we could try to crowd fund it.The full fee is US$2900 but I think they bargained that down to US$2000.
I don't have any major insights. The authors agreed that we couldn't afford to pay for it. One person (not one of the authors) said they would contact the ME Association to see whether they would be willing to pay the fee.Thanks. So what is the protocol, is this something that the MEA has done "on behalf of" the authors? I ask as it could be something to consider in the future, if we have another study that would be useful if it was open access then we could try to crowd fund it.
OK, thanks Tom. My assumption would be that the authors would have a say in it, unless all control with that sort of thing passes to the publication.I don't have any major insights. The authors agreed that we couldn't afford to pay for it. One person (not one of the authors) said they would contact the ME Association to see whether they would be willing to pay the fee.
The full fee is US$2900 but I think they bargained that down to US$2000.
It would be very helpful for advocacy if key papers were public. Crowd funding such things could be very useful.Thanks. So what is the protocol, is this something that the MEA has done "on behalf of" the authors? I ask as it could be something to consider in the future, if we have another study that would be useful if it was open access then we could try to crowd fund it.
Charles, do you know if this, theoretically, could be done with any paper? Could the authors of a paper stop this happening or is the publisher in total control? Or does it depend on the publisher?Yes, we are paying a reduced fee of $2000 to cover the cost of making this very important PACE trial re-analysis paper open access
The fee will be paid from our Medical Education Programme
This money comes from genera funds - not from research funds (i.e. the MEA Ramsay Research Fund)
Dr Charles Shepherd
Hon Medical Adviser, MEA
Thanks. So what is the protocol, is this something that the MEA has done "on behalf of" the authors? I ask as it could be something to consider in the future, if we have another study that would be useful if it was open access then we could try to crowd fund it.
Charles, do you know if this, theoretically, could be done with any paper? Could the authors of a paper stop this happening or is the publisher in total control? Or does it depend on the publisher?
My initial impression from looking at this abstract is that cost-savings due to treatment can probably be entirely explained by the fact that no poor bugger who went through the treatment wanted to go back to the doctor for anything ever again- hence the reduction in healthcare-costs.Sadly, at the same time, along comes more psychobabble in the form of bespoke group CBT for functional somatic syndromes, includimg ME/CFS!
From the Journal of Psychosomatic Research:
http://www.jpsychores.com/article/S0022-3999(17)30018-1/abstract
That's the second time in 2 days I've seen ME/CFS openly called a functional somatic syndrome. Per Fink and Michael Sharpe. They really are going all out for it now, ignoring WHO categorisations and the downfall of PACE. The main problem it seems to me is that they are completely unaccountable and can carry on doing whatever they want regardless of what is going on in ME research elsewhere.Sadly, at the same time, along comes more psychobabble in the form of bespoke group CBT for functional somatic syndromes, includimg ME/CFS!
From the Journal of Psychosomatic Research:
http://www.jpsychores.com/article/S0022-3999(17)30018-1/abstract
That seems the crux of the problem.completely unaccountable
Plus Wessely dragging out his 'harassment and deaths threats' routine for yet another dreary turgid recital.That's the second time in 2 days I've seen ME/CFS openly called a functional somatic syndrome. Per Fink and Michael Sharpe. They really are going all out for it now, ignoring WHO categorisations and the downfall of PACE. The main problem it seems to me is that they are completely unaccountable and can carry on doing whatever they want regardless of what is going on in ME research elsewhere.
Thank you MEA.
A donation will find its way to you shortly to help with the cost.
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Plus Wessely dragging out his 'harassment and deaths threats' routine for yet another dreary turgid recital.
The stark appalling truth is that they could not get away with this ruthless brutal fraud, and have done so for decades, without very high level sustained political protection, from both the medical establishment and various governments.
This intellectual and moral corruption goes all the way to the heart of governance.