As an example, I just saw this;
https://meaustralia.net/2017/03/30/...-training-trial-for-chronic-fatigue-syndrome/
https://meaustralia.net/2017/03/30/...-training-trial-for-chronic-fatigue-syndrome/
PACE trial commentaries in the Journal of Health Psychology to be made open access
- Thread starter charles shepherd
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Very well said @Karen Kirke and @Sean
That would be @charles shepherd 
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That would be @charles shepherd
[QUOTE="Sean, post: 830387, member: 722"
From the start they were absolutely sure that they were right, and that the evidence would eventually catch up and confirm their hypothesis, and make heroes of them.[/QUOTE]
Or it was a set up right from the start, the insurance companies back in the '90's were saying CFS was a major problem and something had to be done about it, so it was more that the evidence had to be made (eg PACE fraud, NICE guidelines) to confirm the hypothesis not that they thought that it would eventually catch up and show their view to be correct.
So they knew it wouldn't catch up because they knew their view was wrong all along, but the view fits with the needs of the insurance companies and government benefit departments and for those promoting such views it has been very beneficial for their careers.
From the start they were absolutely sure that they were right, and that the evidence would eventually catch up and confirm their hypothesis, and make heroes of them.[/QUOTE]
Or it was a set up right from the start, the insurance companies back in the '90's were saying CFS was a major problem and something had to be done about it, so it was more that the evidence had to be made (eg PACE fraud, NICE guidelines) to confirm the hypothesis not that they thought that it would eventually catch up and show their view to be correct.
So they knew it wouldn't catch up because they knew their view was wrong all along, but the view fits with the needs of the insurance companies and government benefit departments and for those promoting such views it has been very beneficial for their careers.
http://www.margaretwilliams.me/2003/unumprovident-sharpe-and-cbt.pdf
"The ME community is well aware of the long-time involvement of psychiatrist Dr Michael
Sharpe with the insurance company UNUM, of his association with Allied Dunbar and of his
recommendation to insurers that claimants with a diagnosis of ME/CFS should be subject to
covert video surveillance. The ME community will also recall that on 17th May 1995 Mike
Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held
in London entitled “Occupational Health Issue for Employers” (where ME was described as
“the malingerers’ charter”) at which they advised employers how to deal with employees who
were on long-term sickness absence with “CFS”. Moreover, the ME community is hardly
likely to forget that in UNUM’s “Chronic Fatigue Syndrome Management Plan”, ME/CFS is
described as “Neurosis with a new banner” and that same document states “UNUM stands to
lose millions if we do not move quickly to address this increasing problem”. Members of
Parliament are on record as being gravely concerned about the difficulties which their
constituents with ME/CFS suffer at the hands of UNUM, as recorded in the House of
Commons debate chaired by Sir Alan Haselhurst on 21st December 1999 (reference: Hansard
147WH-166WH). "
"The ME community is well aware of the long-time involvement of psychiatrist Dr Michael
Sharpe with the insurance company UNUM, of his association with Allied Dunbar and of his
recommendation to insurers that claimants with a diagnosis of ME/CFS should be subject to
covert video surveillance. The ME community will also recall that on 17th May 1995 Mike
Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held
in London entitled “Occupational Health Issue for Employers” (where ME was described as
“the malingerers’ charter”) at which they advised employers how to deal with employees who
were on long-term sickness absence with “CFS”. Moreover, the ME community is hardly
likely to forget that in UNUM’s “Chronic Fatigue Syndrome Management Plan”, ME/CFS is
described as “Neurosis with a new banner” and that same document states “UNUM stands to
lose millions if we do not move quickly to address this increasing problem”. Members of
Parliament are on record as being gravely concerned about the difficulties which their
constituents with ME/CFS suffer at the hands of UNUM, as recorded in the House of
Commons debate chaired by Sir Alan Haselhurst on 21st December 1999 (reference: Hansard
147WH-166WH). "
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Thank you @Jonathan Edwards for this withering piece.
I'm going to plead incapacity and ask someone to explain this. Does it mean that for Sharpe et al. to be right the CBT patients should have kept improving?
I'm going to plead incapacity and ask someone to explain this. Does it mean that for Sharpe et al. to be right the CBT patients should have kept improving?
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Thank you @Jonathan Edwards for this withering piece.
I'm going to plead incapacity and ask someone to explain this. Does it mean that for Sharpe et al. to be right the CBT patients should have kept improving?
I'm going to plead incapacity and ask someone to explain this. Does it mean that for Sharpe et al. to be right the CBT patients should have kept improving?
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I had a battle with UNUM who managed my company's loss of earnings insurance policy. Initially I had a 5 minute conversation on the phone with some guy from the insurer (non medical) , who then decided that I was fit for work. Their rationale for this was based on the fact that I waited for my diagnosis for nearly a year before getting signed off from work. They didn't look at any medical reports that I offered them, just refused to pay.
I persevered and eventually got the money out of them...I feel like I've won a bigger battle now I've read this.
I persevered and eventually got the money out of them...I feel like I've won a bigger battle now I've read this.
Wow… just… wow.
Would it be possible to collect a few hundred brief, dignified patient testimonies to refute that outrageous and in fact distressing statement? Even if they don't believe us, I would like to tell them.
I've realised that justice isn't just about material rights and dues but about having your experience and hence your identity acknowledged by other people. Dr Peter Rankin, a neuropsychologist and Hillsborough survivor, has said,
"If your most significant experience is invalidated… and… not believed by the rest of the world, then you have to fight for that to be corrected otherwise you don't really exist as a person."
White et al.'s actions have undermined my basic dignity by pressuring me to believe things I knew weren't true, smearing me when I dissented and now denying my existence. It is profoundly distressing. There's a subjective outcome of the PACE trial for you, Professors.
Would it be possible to collect a few hundred brief, dignified patient testimonies to refute that outrageous and in fact distressing statement? Even if they don't believe us, I would like to tell them.
I've realised that justice isn't just about material rights and dues but about having your experience and hence your identity acknowledged by other people. Dr Peter Rankin, a neuropsychologist and Hillsborough survivor, has said,
"If your most significant experience is invalidated… and… not believed by the rest of the world, then you have to fight for that to be corrected otherwise you don't really exist as a person."
White et al.'s actions have undermined my basic dignity by pressuring me to believe things I knew weren't true, smearing me when I dissented and now denying my existence. It is profoundly distressing. There's a subjective outcome of the PACE trial for you, Professors.
This, to my mind, is an interesting thought. No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them but I think it could be of some use to accumulate evidence for this.
I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.
I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.
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Now that's something I can sign up to!
Of course. But the main proof of distress is someone saying they feel distress, no? Which we know they already know about because they've skulked around this forum.
We would just have to make it clear that our distress is not based on a misapprehension of their position. That Chalder is wrong when she continues to declare that patients dislike CBT/GET because we misunderstand it as implying that ME is a purely psychiatric disease.
We would just have to make it clear that our distress is not based on a misapprehension of their position. That Chalder is wrong when she continues to declare that patients dislike CBT/GET because we misunderstand it as implying that ME is a purely psychiatric disease.
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You will need to qualify this though. Any ME or CFS patient? Or do you want to restrict it to UK? This needs to be very clear in the petition.
If any patient anywhere in the world, I would sign it if it was worded appropriately.
If any patient anywhere in the world, I would sign it if it was worded appropriately.
Or an open letter focusing strongly on the aspect of harm (especially that attributable to PACE), with no distractions from this aim, but including whatever is necessary to support it, and nothing else. List of signatories to be very carefully considered - a vast list of interested parties would probably be ineffective, but a modestly long list of people with powerful tangible evidence of having been harmed - directly or indirectly - due to PACE.
Partly I'm just flabbergasted they have regressed to this level of denial, because it's such a doddle to disprove it. Not only is distress "very evident among the patient community" as Professor Edwards has said, it is implicit in their own representation of PACE critics.
Obviously tangible harm is hugely important. But my main objection here is philosophical. As scientists they can argue about p-values or case definitions or whether the Countess of Mar is harassing them. They do not get to tell me who I am. That's my prerogative. Yet after 16 years of ME I was genuinely shocked to learn last year that listening to patients is considered a core duty of doctors. I honestly thought they thought their job was to explain to patients why we're wrong. And worse, I tried to believe them.
Obviously tangible harm is hugely important. But my main objection here is philosophical. As scientists they can argue about p-values or case definitions or whether the Countess of Mar is harassing them. They do not get to tell me who I am. That's my prerogative. Yet after 16 years of ME I was genuinely shocked to learn last year that listening to patients is considered a core duty of doctors. I honestly thought they thought their job was to explain to patients why we're wrong. And worse, I tried to believe them.
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