(Note this was first published on my 'PACE Complaint Documents' blog on 10 February 2016. I am placing here for ease of reference for others).
Summary of my specific concerns about PACE with annotated bibliography
This is a summary of my specific concerns about the PACE trial and its methodology, which differs to a degree to many of the other concerns currently being aired. This does not mean I do not share those other concerns. I do. but my own concerns here are more specific to other problems in PACE methodology, and provide additional fundamental reasons why the PACE trial methodology needs a critical review with a view to possible retraction. I actually believe all published PACE papers should be retracted because their 'findings' are unsafe: a consequence of the many methodological flaws of the trial. By 'unsafe' I mean both scientifically unsound and, actually more importantly, dangerous to patients.
It must be said that some of these concerns listed here have been present since at least 2004, and remain, borne out by newer evidence as it became available when the PACE trial paper was published. Others are newer concerns that arose as the paper was published and other flaws became evident.
The methodological and ethical problems I have identified are as follows:
1. Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;
2. Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;
3. Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;
4. Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;
5. The inclusion of major mental illnesses in the research cohort;
6. The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;
7. The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome;
8. The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.
ANNOTATED BIBLIOGRAPHY
1. Regarding my concerns about PACE's (and other projects') studied ignoring of the Canadian Guidelines:
http://bmj.bmjjournals.com/cgi/eletters/bmj.38301.587106.63v1
Also my response "Problems in the PACE Trial" (13 November 2007)
to the White et al paper "Protocol for the PACE trial":
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6/comments
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-regarding.html
See also my book "Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses" (2012) Market Rasen: The Village Digital Press, especially chapters 2, 4, and 6.
2. Regarding the problems of the London Criteria in particular:
Online exchange with Ellen Goudsmit following my response "Problems in the PACE Trial" (13 November 2007)
to the White et al paper "Protocol for the PACE trial":
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6/comments
See also an online discussion on Phoenix Rising:
http://forums.phoenixrising.me/index.php?threads/pace-trial-and-the-criteria-for-m-e-used.10766/
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-regarding.html
3. Regarding the problems around criteria used generally:
http://bmj.bmjjournals.com/cgi/eletters/bmj.38301.587106.63v1
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6/comments
http://forums.phoenixrising.me/index.php?threads/pace-trial-and-the-criteria-for-m-e-used.10766/
http://forums.phoenixrising.me/index.php?threads/pace-study-and-oxford-criteria.8880/
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-regarding.html
See also my book "Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses" (2012) Market Rasen: The Village Digital Press, especially chapters 2, 4, and 6.
4. Regarding PACE and/or other research excluding ME patients (a neurological disease according to WHO ICD-10) with neurological dysfunction (and signs of physical illness) from research:
http://forums.phoenixrising.me/index.php?threads/pace-trial-and-the-criteria-for-m-e-used.10766/
http://forums.phoenixrising.me/index.php?threads/pace-study-and-oxford-criteria.8880/
http://forums.phoenixrising.me/index.php?threads%2Fpoll-swollen-lymph-nodes-did-you-have-these-before-getting-me-cfs-or-did-they-only-appear-after.9250%2F
See also: "RE: Authors Response" (Angela Kennedy replied to Anthony_Cleare on 13 Jan 2010 at 23:18 GMT)
http://www.plosone.org/annotation/listThread.action?root=1669
See also: Questions about 'CFS' and 'ICF' selection criteria of cohort' Response to Byrnes et al ('Expression in
Peripheral Blood Leukocytes in Monozygotic Twins Discordant for Chronic Fatigue: No Evidence of a
Biomarker' PLoS ONE 4(6): e5805 2009) 3 January 2011.
http://www.plosone.org/annotation/listThread.action?root=3801
See also: "'Cost-effectiveness' is irrelevant when safety has not even been addressed in the PACE trial 02 Aug 2012 at 11:35 GMT in response to McCrone et al "Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis"
http://www.plosone.org/annotation/listThread.action?root=52481
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-regarding.html
See also my book "Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses" (2012) Market Rasen: The Village Digital Press, especially chapters 2, 4, and 6.
5. Regarding claims to safety and efficacy:
http://www.plosone.org/annotation/listThread.action?root=52481
http://bmj.bmjjournals.com/cgi/eletters/bmj.38301.587106.63v1
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-regarding.html
See also my book "Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses" (2012) Market Rasen: The Village Digital Press, especially chapters 2, 4, and 6.
6. Regarding the failure to address the biomedical evidence available detailing serious organic physiological dysfunction in patients who receive a 'CFS' or 'ME' diagnosis:
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6/comments
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-
7. Other points:
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6/comments
See also my complaint to the Lancet: http://pacedocuments.blogspot.co.uk/2011/04/complaint-to-editor-of-lancet-
See also my book "Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses" (2012) Market Rasen: The Village Digital Press, especially chapters 2, 4, and 6.
Tuesday 11 October 2016
Wednesday 5 October 2016
Transcript of Liz Carr's speech at 2016 Labour Party Conference
Below is the transcript of a speech Liz Carr gave at the 2016 Labour Party Conference. The transcript was provided by Liz herself, and permission kindly given for people to share. I actually believe it will prove one of the most important speeches in history.
The speech can be listened to and watched here:
http://www.mirror.co.uk/news/uk-news/actress-liz-carr-stuns-audience-8911590#ICID=sharebar_facebook
"I won’t go on too much about the fact I’m on a BBC TV show called Silent witness - I only bring that up not in the name of my own ego but to go, we can't be Silent Witnesses, we actually have a moral responsibility to be activists and to give voice to those that don’t have voice and to give visibility to those that don’t have visibility. I’m a relatively privileged disabled person but still, at the moment, I’ve just had a care assessment. I’m at risk of my benefits being cut - my care assessment that got me here today, that paid for the personal assistance to get me here today. That’s happening to me. I can go to the press. I’ve got a profile. I’m white, I’m articulate and I’m educated. I have privilege and that’s happening to me. My social worker sat for 15 minutes at the beginning of my assessment and told me about the cuts to the Borough where I live and I had to stop her and say, ’this is unlawful - what you’re doing - I know it is because I know my rights’. But what if she goes to anybody else like that - and she does. She goes to other people’s houses and she sits there and she says, “you know we’ve got to make amends, we haven’t got enough money sooo… ”. That’s before she’s even looked at what people need. This is before she’s even said anything else other than ‘Oooh we’ve got lots of cuts’. How terrifying. How terrifying to older and ill and disabled people sitting there at home without the privilege that I have. So i can’t be a silent witness as much as I love that job, i have to be vocal. And I join with Disabled People Against Cuts, I join with other groups of disabled people but not just because of our issues, because this is hitting us all.
Now there’s this sort of sense and certain press would have it that to be disabled today is all about blue badges and benefits and big loos isn’t it? That’s all it’s about. It’s a bit of a joke really. No and forgive me because I’m going to read this. For many people, being disabled in austerity Britain means being hated, it means being stigmatised, demonised as burdens, drains on the state, it means being labelled as fraudsters and work shy. It’s about being segregated and excluded and oppressed and discriminated against. It’s about being forgotten and derided and abused and sanctioned and attacked and killed and cut and rationed and reduced and starved and homeless and hungry and fearful and terrified and alone and isolated and abandoned and denied resources and silenced and rendered invisible and made to jump through hoops, to prove your worth, devalued, punished, subject to vicious attacks both by individuals and the state. It’s about being inhuman. It’s about being seen as useless eaters and the undeserving poor. That’s the reality for disabled people in today’s society.
And that’s not just about being disabled, that’s not just about us. We know that’s about every other oppressed group and every person who’s struggling to survive in austerity Britain. Forget words like reform and review - do you know what they mean? Rationing. As soon as you hear those words, that’s what it means - rationing. That’s what they’re trying to do. That’s what that social worker was doing to me, that is what she wants.
You know we are told, and I’ve heard this before, that work will set us free. Where have I heard that before? Sorry, but it needs to be said because to go to work, what do we do? Well let’s cut the benefits that people need by a third. Let’s do that with the ESA cuts, let’s do that. And let’s say you do have a chance of getting into employment - that’s employment where it’s accessible, or where employers aren’t actually scared to employ you because they don’t see being disabled as less than - which they normally do. So let’s say there’s no discrimination in employment and you actually get into employment, we then have cut to Access to Work which is the support to enable us to do our jobs so that’s been cut. So if we do get a job and we do get the support - and that’s quite unlikely - that’s great but do you have the social care to get you up in the morning or to pick you up from work or to cook you a hot meal to enable you to be in a state to do that job because that’s been cut. And how about your transport? Because Disability Living Allowance has been changed to the Personal Independence Payment and thousands and thousands of people have been miraculously cured. Hmmm, funny that? Is that rationing? Yes it fucking is. So lots of people now don’t have their own cars, they don’t have ways of getting from A to B. Getting a car on the Motability scheme isn’t a luxury - it’s a reality because most of the infrastructure in this country is not accessible unless you’re in the cities and even if it is, people still need bespoke transport for their bespoke needs. Right so now, let’s say we’ve got that job, we’ve got that social care and that’s a miracle if you get all that and you’ve got that transport. Did you get the education? Or did you get a segregated education that cared more about tossing bean bags and physio than doing the national curriculum and getting a decent education? And if you do get to higher education, what about the disabled student allowance / support grants that have also been cut? I mean, I could go on… it’s a miracle any of us get here. And I don’t mean in any religious sense, I mean because of the barriers that we are facing. But of course, it is absolutely true to say that work will set us free. Ummm yeah…
I guess I’m here today for all those who have died waiting for benefits to be reinstated, for those found fit for work months after their deaths, for those who have killed themselves because of fear of that pernicious brown envelope arriving through their letter box or the evil of the DWP or the unending shame of being part of our welfare state - because that’s what we’ve done, we’ve made it a thing of shame rather than a thing of support. We’ve made suicide a desirable alternative. Look, let's just cut out the middle man and legalise assisted suicide. Let’s give the state even more power over our life and death.
We are all collateral damage in the ideological war that this government is waging. And this is a war - make no mistake of it - and the strongest weapon that we have, in this room now is collectivism, solidarity and strength in numbers. This is not about pitting us against each other as we squabble over who is the hardest hit. This is the time for us to come together and to unite - all of us who are hit and hurt by austerity. We are stronger together and we are are all that we need in this room here and now. Thank you very much."
The speech can be listened to and watched here:
http://www.mirror.co.uk/news/uk-news/actress-liz-carr-stuns-audience-8911590#ICID=sharebar_facebook
"I won’t go on too much about the fact I’m on a BBC TV show called Silent witness - I only bring that up not in the name of my own ego but to go, we can't be Silent Witnesses, we actually have a moral responsibility to be activists and to give voice to those that don’t have voice and to give visibility to those that don’t have visibility. I’m a relatively privileged disabled person but still, at the moment, I’ve just had a care assessment. I’m at risk of my benefits being cut - my care assessment that got me here today, that paid for the personal assistance to get me here today. That’s happening to me. I can go to the press. I’ve got a profile. I’m white, I’m articulate and I’m educated. I have privilege and that’s happening to me. My social worker sat for 15 minutes at the beginning of my assessment and told me about the cuts to the Borough where I live and I had to stop her and say, ’this is unlawful - what you’re doing - I know it is because I know my rights’. But what if she goes to anybody else like that - and she does. She goes to other people’s houses and she sits there and she says, “you know we’ve got to make amends, we haven’t got enough money sooo… ”. That’s before she’s even looked at what people need. This is before she’s even said anything else other than ‘Oooh we’ve got lots of cuts’. How terrifying. How terrifying to older and ill and disabled people sitting there at home without the privilege that I have. So i can’t be a silent witness as much as I love that job, i have to be vocal. And I join with Disabled People Against Cuts, I join with other groups of disabled people but not just because of our issues, because this is hitting us all.
Now there’s this sort of sense and certain press would have it that to be disabled today is all about blue badges and benefits and big loos isn’t it? That’s all it’s about. It’s a bit of a joke really. No and forgive me because I’m going to read this. For many people, being disabled in austerity Britain means being hated, it means being stigmatised, demonised as burdens, drains on the state, it means being labelled as fraudsters and work shy. It’s about being segregated and excluded and oppressed and discriminated against. It’s about being forgotten and derided and abused and sanctioned and attacked and killed and cut and rationed and reduced and starved and homeless and hungry and fearful and terrified and alone and isolated and abandoned and denied resources and silenced and rendered invisible and made to jump through hoops, to prove your worth, devalued, punished, subject to vicious attacks both by individuals and the state. It’s about being inhuman. It’s about being seen as useless eaters and the undeserving poor. That’s the reality for disabled people in today’s society.
And that’s not just about being disabled, that’s not just about us. We know that’s about every other oppressed group and every person who’s struggling to survive in austerity Britain. Forget words like reform and review - do you know what they mean? Rationing. As soon as you hear those words, that’s what it means - rationing. That’s what they’re trying to do. That’s what that social worker was doing to me, that is what she wants.
You know we are told, and I’ve heard this before, that work will set us free. Where have I heard that before? Sorry, but it needs to be said because to go to work, what do we do? Well let’s cut the benefits that people need by a third. Let’s do that with the ESA cuts, let’s do that. And let’s say you do have a chance of getting into employment - that’s employment where it’s accessible, or where employers aren’t actually scared to employ you because they don’t see being disabled as less than - which they normally do. So let’s say there’s no discrimination in employment and you actually get into employment, we then have cut to Access to Work which is the support to enable us to do our jobs so that’s been cut. So if we do get a job and we do get the support - and that’s quite unlikely - that’s great but do you have the social care to get you up in the morning or to pick you up from work or to cook you a hot meal to enable you to be in a state to do that job because that’s been cut. And how about your transport? Because Disability Living Allowance has been changed to the Personal Independence Payment and thousands and thousands of people have been miraculously cured. Hmmm, funny that? Is that rationing? Yes it fucking is. So lots of people now don’t have their own cars, they don’t have ways of getting from A to B. Getting a car on the Motability scheme isn’t a luxury - it’s a reality because most of the infrastructure in this country is not accessible unless you’re in the cities and even if it is, people still need bespoke transport for their bespoke needs. Right so now, let’s say we’ve got that job, we’ve got that social care and that’s a miracle if you get all that and you’ve got that transport. Did you get the education? Or did you get a segregated education that cared more about tossing bean bags and physio than doing the national curriculum and getting a decent education? And if you do get to higher education, what about the disabled student allowance / support grants that have also been cut? I mean, I could go on… it’s a miracle any of us get here. And I don’t mean in any religious sense, I mean because of the barriers that we are facing. But of course, it is absolutely true to say that work will set us free. Ummm yeah…
I guess I’m here today for all those who have died waiting for benefits to be reinstated, for those found fit for work months after their deaths, for those who have killed themselves because of fear of that pernicious brown envelope arriving through their letter box or the evil of the DWP or the unending shame of being part of our welfare state - because that’s what we’ve done, we’ve made it a thing of shame rather than a thing of support. We’ve made suicide a desirable alternative. Look, let's just cut out the middle man and legalise assisted suicide. Let’s give the state even more power over our life and death.
We are all collateral damage in the ideological war that this government is waging. And this is a war - make no mistake of it - and the strongest weapon that we have, in this room now is collectivism, solidarity and strength in numbers. This is not about pitting us against each other as we squabble over who is the hardest hit. This is the time for us to come together and to unite - all of us who are hit and hurt by austerity. We are stronger together and we are are all that we need in this room here and now. Thank you very much."
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