Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

Wolfiness

Wolfiness

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Yes I saw that with stock photo of young woman looking vaguely fed up... Given how keen they all were to report on the original trial and all its subsequent litter of analyses and mediations I'm surprised that not a single newspaper seems to have mentioned this development… Is anyone writing to them to point this out?
 
Snowdrop

Snowdrop

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I agree. Something like this will require meeting time. Assessing the material considering the angles deciding on what to focus on. It's not the type of thing one writes like breaking news of the apocalypse (needs to be pretty immediate or it's irrelevant) I'm hoping for a series of articles that includes info on the smear campaign against sick people.
 
AR68

AR68

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Snowdrop said:
The BPS crowd have maintained that (irrespective of what the etiology might be) they take ME to be a serious illness.
Well, we are seriously ill and PR is our safe place. And yet they troll through posts looking to smear us. All they do is set a new low in behaving unprofessionally.
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Chalder came out with an aside whilst giving evidence about the gravitas of Coyne being involved in calls for an FOI and also said that any release of data wouldn't necessarily help the debate due to some people having 'belief'.

As I've said before, we are being watched. That's not being paranoid. This was made perfectly clear at the tribunal. Anything said could be used, rightly or wrongly, against participants on these boards. *They* were the ones claiming PWMEs were irrational yet they were the ones wrongfully hiding data and monitoring public forums, exaggerating claims.

The ME public behaved impeccably during the time between the hearing and the judgment. We should be allowed to debate the judgment.

As I've also said, I found QMUL's behaviour disgraceful. In my opinion, they are trying to stifle genuine debate with bullying tactics.
 
Kati

Kati

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AR68 said:
Chalder came out with an aside whilst giving evidence about the gravitas of Coyne being involved in calls for an FOI and also said that any release of data wouldn't necessarily help the debate due to some people having 'belief'.

As I've said before, we are being watched. That's not being paranoid. This was made perfectly clear at the tribunal. Anything said could be used, rightly or wrongly, against participants on these boards. *They* were the ones claiming PWMEs were irrational yet they were the ones wrongfully hiding data and monitoring public forums, exaggerating claims.

The ME public behaved impeccably during the time between the hearing and the judgment. We should be allowed to debate the judgment.

As I've also said, I found QMUL's behaviour disgraceful. In my opinion, they are trying to stifle genuine debate with bullying tactics.
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Sure, we are being watched. However we have a right of free speech. We have a right to reactions. Each one of us have an experience with the health care system, and each one of us uniquely interpret the events within their personal context and within the patient community context.

Sure, they can watch us. It remains that there are serious questions regarding the integrity of the PACE trial the authors have been avoiding giving answers.
 
Kati

Kati

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This is not coming from patients. It's coming from a jury.

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Source: https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
 
Wolfiness

Wolfiness

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Someone needs to write a long article a bit like this one www.theestablishment.co/2016/05/13/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers/ about all the timeless systems of denigration and oppression operated by the strong against the weak because this fits right in to that long list and has long since gone from being merely medical to being a social justice/human rights issue. The fact that White et al actually believe their own bull that they are the victims here is actually pretty typical.
 
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Snowdrop

Snowdrop

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Quote from the article:

Adding to the good news, the U.S. National Institute of Health is right now designing a new clinical trial “to explore the clinical and biological characteristics of ME/CFS.”

Let's hope they do right by us and pony up a substantial amount now that the cats out of the bag and everyone knows how we've been treated. (I know not really the point of the article)
 
Countrygirl

Countrygirl

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Meanwhile the harmful influence of PACE trundles on to the detriment of patients in the UK.


A new module for online learning for doctors allegedly based on the latest latest scientific evidence appeared in PULSE ONLINE yesterday. The site states it 'supports GPs through appraisal and revalidation'. It claims that it is a case-based module to guide GPs through the latest evidence in the diagnosis and management of fatigue and chronic fatigue syndrome. A certificate will be awarded to those who complete the module...and the doctor can double their credit if they can show evidence of impact (whatever that means........we certainly know what 'impact' it will have on patients.)

The module is placed in the section for...............mental health.

http://pulse-learning.co.uk/clinical-modules/mental-health/cfs-case-based#

Can anyone access the module so we can see the accuracy of the information?
 
A

AndyPR

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Guiding the lifeboats to safer waters.
Countrygirl said:
Meanwhile the harmful influence of PACE trundles on to the detriment of patients in the UK.


A new module for online learning for doctors allegedly based on the latest latest scientific evidence appeared in PULSE ONLINE that 'supports GPs through appraisal and revalidation' yesterday (19th August),It claims that it is a case-based module to guide GPs through the latest evidence in the diagnosis and management of fatigue and chronic fatigue syndrome. A certificate will be awarded to those who complete the module...and the doctor can double their credit if they can show evidence of impact (whatever that means........we certainly know what 'impact' it will have on patients.)

The module is placed in the section for...............mental health.

http://pulse-learning.co.uk/clinical-modules/mental-health/cfs-case-based#

Can anyone access the module so we can see the accuracy :)rolleyes:) of the information?
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Thread discussing this here http://forums.phoenixrising.me/index.php?threads/new-cpd-learning-module-on-cfs-for-gps-uk.46288/
 
TiredSam

TiredSam

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PennyIA said:
I can only help that they delay, but then disclose and then fight as they will, truly independent analysis will still happen
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I can't agree with this. Every day wasted is an estimated 17 million person-days of unnecessary and often excruciating suffering more. Day after day. Whilst as a mild and fairly symptom-free patient I am enjoying the prospect of watching them squirm, this show really has gone on for long enough (30 years and counting).

The sooner we start being treated like human beings and biomedical research can progress well-funded and unhindered by this psycho-crap, the sooner we can get some treatments, maybe a cure, and get back to our lives (those of us lucky enough to have had a life before we became ill). Every further day that Peter White & co's charade delays this is an absolute disgrace.
 
sarah darwins

sarah darwins

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TiredSam said:
The sooner we start being treated like human beings and biomedical research can progress well-funded and unhindered by this psycho-crap, the sooner we can get some treatments, maybe a cure, and get back to our lives (those of us lucky enough to have had a life before we became ill). Every further day that Peter White & co's charade delays this is an absolute disgrace.
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Well said, Sam. To quote David Bowie (and why wouldn't you?), It's No Game.

I am barred from the event
I really don't understand the situation
So where's the moral?

People have their fingers broken
To be insulted by these fascists
Is so degrading and it's no game
 
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