The PACE data have been released (9 Sept 2016)

[TiredSam]

I'm a bit bored with my rage, to be honest. I get it out and check it's there from time to time but it just feels a bit old these days. I just want to beat the fuckers so I can die happy.

ok so we agree about everything apart from widow twanky's boot .

The PACE trail is a fraud on the public purse more than one person was involved, more than one person span out lies to the media, more than one person was involved with data sharing refusal, more than one person is involved in the BACFS, more than one person admits to manipulating claimed incidents which were put out in the media as physical attacks on their person in public, more than one person is involved in the SMC.

Obviously mass-hysteria amongst a population all suffering from the same delusion.

 

[A.B.]

I would be surprised if there is no concerted effort by the insurance industry to promote psychosocial ideas. They can literally save mllions to billions by labelling poorly understood illnesses as behavioural rather than medical issue.

That doesn't mean that there isn't some sort of cultish belief system in supernatural, err, mental causes for as of yet unexplained physical symptoms.

A belief system that requires bad science to flourish, because proper studies that corrected for placebo effects would yield only null or marginal results.

Then there's clearly a political bias in the UK.

Who is going to make a career under these circumstances? The immoral tobacco scientist that sells the truth to the highest bidder. The incompetent babbler that lives in a dream world. The ignorant decision maker that is unable to distinguish good from bad science. The person that wants to earn a living without asking hard questions.

The end result can look a lot like a big conspiracy, and while immoral tobacco scientists probably play a role somewhere (Wessely seems a good fit) it's a combination of factors.

 

[Snowdrop]

Ultimately their real problem is that they are not the brains behind the operation. They are the face of PACE they do the grunt work but ultimately they are just minions.
They get glory and money by doing the bidding of their political overlords. I'm sure presently they are feeling a bit put upon and never expected that it would come to this.

Ironically, they expect all gain and no pain.

And I don't feel at all sorry for them. Not one little bit.

 

[Dr Speedy]

@Dr Speedy what is the 'ridicule' towards patients from BPS that your latest piece refers to?

What do you mean by my latest piece?

 

[Snowdrop]

Have you all seen this blog post by @sarah darwins? Warning: it's unsafe to drink anything while you read this. I nearly snorted my tea.
http://forums.phoenixrising.me/index.php?entries/the-dead-trial-sketch.2011/

Although in my case it's coffee -- I find I do this a lot with both Sarah Darwins' posts and Tired Sams

Their posts should come with warnings--'may need to clean computer screen after reading'

 

[slysaint]

Have you all seen this blog post by

sorry but had to post the original;

 

[Large Donner]

The end result can look a lot like a big conspiracy, and while immoral tobacco scientists probably play a role somewhere (Wessely seems a good fit) it's probably a combination of factors.

I am not sure if you are mixing up the effects of a top down conspiracy and its purpose being to obfuscate facts and change beliefs systems and policy and coming to the conclusion that "there is not a massive conspiracy with everyone involved".

A conspiracy, by legal definition, only requires a minimum of two people to mislead, or plot fraud or deception either to, or, cause loss harm or injury. If its only one person its just a single person guilty of the same crime, but not guilty of a conspiracy.

Whomever gets dragged along with those false claims or fraud is not part of a conspiracy in legal terms if they where not part of the ongoing deliberate plot.

There are many levels of peoples or department heads etc in this ME issue over 30 years who could potentially be accused of varying levels of possible conspiracy, or if not conspiracy then negligence etc. That does not mean that if the facts where put to a jury they would necessarily find the people at the very top pulling the fraud strings not guilty because "lots of others where just pawns" in the deception.

A court could not throw out a claim of conspiracy against two individuals for example because "theres not a massive conspiracy going on".

Its the effects of a conspiracy and the intent of two or more people that get put on trial.

Of course, I am talking about a hypothetical trial at this stage.

In fact it would be clear to see with all the evidence that the potential crime on charge was the mass deception of multiple layers of public servants and the private insurance industry causing loss and or harm to large numbers of people using theft of the public purse by virtue of deception of the facts in order to gain those funds.

Without the wizard/s of Oz behind the curtain in the ME fraud or the tobacco example there is no deception so the issue of "a combination of factors leading to our unfortunate circumstances" has less potency or even perhaps may not have existed to the extent of detriment that it caused over numerous decades.

One does not need to prove multiple layers with hundreds of people deliberately involved to make the legal claim of a conspiracy, one just needs two or more people involved. Obviously one would go straight to the top of the pyramid if one wanted to point the finger at a minimum of two people who conspired at any point over some 30 years.

There is then the whole other meme of the invention of the term "conpiracy theorist" which dates back to the Kennedy assassination and many have claimed was a deliberate abuse of meaning of words and language to create an easy put down to in order to marginalize people who challenged official narratives.

This tactic actually works so well to me it is evident in the fact that so many people confuse or have no understanding of the legal definition of a conspiracy and start talking about alien abductions and tin foil hats.

Of course it would be very interesting to see who the establishment would throw under the bus to save their own heads, reputations and pensions in the PACE/ME fiasco.

I would be happy if they divulged the top ten names involved in the potential conspiracy, not naming any names of course.

 

[jimells]

Not only that but all of those people work together, go to the same meetings and belong to many of the same organisations many of which they set up themselves.

There is so much smoke than one needs a Scott air pack to get close enough to look for flames.

Straus and Fukuda certainly conspired to bury the illness by re-defining it out of existence. It's in black-and-white on official letterhead, no less! Straus even offers Fukuda a freakin' job for doing such a fine job of organizing an "international consensus that has scientific merit and is politically acceptable".


CFS Case Definition Straus IOM DHHS

Straus admits he has been working on this project since 1991. That is the same year that Sir Simon Wessely was a keynote speaker at a conference sponsored by NIAID and NIMH. I don't know if it was the same "NIH workshop" mentioned in the letter. Sir Simon and Sharpe were both involved with the development of the Fukuda definition (I don't have a handy reference for that).

In fact, Sir Simon is the thread that ties the whole rotting fish-wrap. He is a founding member of the Science Media Centre. He is the head of the British psychiatrist club. He's worked for the insurance industry. Yank on his chain, and the crumbling edifice disintegrates.

https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political

The 2006 report by the UK Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis stated that, "CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies."

"Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies."

The Group called for investigation of what they called, "numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

The Gibson Enquiry called for a proper investigation TEN years ago. It's not too late to start one.


Cort did a very interesting interview with Ton Hennessey, a prominent "CFS" advocate until his death. It is well worth reading again, if only to remind ourselves just how little has changed politically in the last eight years. Until now, that is...

I'm sure the tobacco industry believed they would never have to pay for the harm they caused. They don't believe that anymore.

 

[Large Donner]

There is so much smoke than one needs a Scott air pack to get close enough to look for flames.

Straus and Fukuda certainly conspired to bury the illness by re-defining it out of existence. It's in black-and-white on official letterhead, no less! Straus even offers Fukuda a freakin' job for doing such a fine job of organizing an "international consensus that has scientific merit and is politically acceptable".


CFS Case Definition Straus IOM DHHS

Straus admits he has been working on this project since 1991. That is the same year that Sir Simon Wessely was a keynote speaker at a conference sponsored by NIAID and NIMH. I don't know if it was the same "NIH workshop" mentioned in the letter. Sir Simon and Sharpe were both involved with the development of the Fukuda definition (I don't have a handy reference for that).

In fact, Sir Simon is the thread that ties the whole rotting fish-wrap. He is a founding member of the Science Media Centre. He is the head of the British psychiatrist club. He's worked for the insurance industry. Yank on his chain, and the crumbling edifice disintegrates.

https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political


The Gibson Enquiry called for a proper investigation TEN years ago. It's not too late to start one.


Cort did a very interesting interview with Ton Hennessey, a prominent "CFS" advocate until his death. It is well worth reading again, if only to remind ourselves just how little has changed politically in the last eight years. Until now, that is...

I'm sure the tobacco industry believed they would never have to pay for the harm they caused. They don't believe that anymore.

That's very interesting and is only one example of potential deliberate multi layered conspiring.

One quote I would like to add to this discussion is the one regarding the letter circulating around the insurance company I think Swiss Life/Provident, in the late 80s/early 90s life that talks of "potential losses if the issue of CFS etc isn't dealt with".

That's very bad paraphrasing but does anyone know what I mean and can they post the quote/letter here?

I am pretty sure Malcom Hooper exhibited it in one of his articles/letters to officials etc.

Perhaps a thread whereby people post potential examples of conspiring and the outcomes of those contacts in terms of a chronological list of further meetings between the parties and the outcomes or ongoing publically available recordings minutes of such meetings?

 

[flybro]

Short blog post by Sally K Burch

Cheers Dolphin, and good to see ya

 

[Snowdrop]

The problem now is that such vast sums of money are at stake that I believe businesses routinely are willing to pay out huge sums because the amount at stake is so vastly larger. Don't know how governments justify--maybe they hope when the shit hits the fan that their opponents are in power? Or at least not them personally after a long and distinguished career.

 

[Wolfiness]

i agree, TiredSam, I can just about accept that they wanted to prove their pet theory by carrying out a large trial, but their unscientific way of conducting the trial, and their completely unforgivable distortion of the null outcome, is outrageously unscientific.

Looking at the whole sorry saga, I can only see self interest (careers and kudos), medical negligence(ignoring biomedical research and the evidence of harms of GET) and even malice(blame the patient, act the victim, hide the data etc) creeping in.

I think @worldbackwards is right in that they really think they are the victims. See gobsmacking scan below and the ludicrous idea that they are entitled to shield themselves from warranted 'reputational damage'. Most abusers and oppressors think they are the victims. They are, in the looser feminist sense of the word, gaslighting us.

I was saying on Facebook this morning, I bet you every single person in the world has 'maladaptive coping and cognitive distortions' and it's only some of us who are required to address them. In fact it's the victims who are required. Get the bullies and obfuscaters and complacent f*ckwits to address their cognitive distortions.

 

[alex3619]

If there is no conspiracy that means by definition that there has only ever been one person behind the insurance lobbying, the countless BPS organisations set up, clearly outlined refusal off data which hides the truth behind a medical treatment causing potential harm, the SMC etc etc.

The issue here is the difference between conspiracy and politics. There is no question there is widespread political wrangling going on.

Now if David Tuller is right and they wrote a paper about intrinsic bias in the use of standard deviation calculation on extreme data that is not normalized, then there are grounds for investigation for scientific fraud. However there is a complication here - they are clever enough to tell everyone the bare essentials of what they did. It should have been picked up by the reviewers, editors, the readers etc. Of course we did find the problem, but David Tuller found the paper that shows they knew exactly what they were doing. So if they told people, is it fraud? Or just poor scientific practice? They seem to love ambiguity.

Has anyone looked up that paper cited by David Tuller?

To me the difference between conspiracy and politics and stupidity and greed are not always obvious. Politics turns to conspiracy, by my way of thinking, if there is a deliberate attempt to improperly sway the situation in their favour. The issue comes down to what is "improperly". It seems that good scientific practices are acceptably thrown out the window in large areas in psychiatric, and especially psychogenic, research. All of this seems to be in a political and social framework, not scientific. The scientific trappings are part of the persuasive technique, and given these claims often seem to meet the definition of nonscience then it invokes the possibility of pseudoscience. In science there is nothing as dangerous as a true believer. Science relies on evidence and reason, not belief.

Its deeply ironic that Wessely keeps going on about how CFS is a social phenomenon, while at the same time BPS is a social phenomenon inside and outside of psychiatry. So is their claim that CBT/GET is effective in treating CFS and ME.

I would bet there is nothing like a single conspiracy. There will be widespread and complicated politics. Inside that, as in any large group of people working on an issue, will be a whole lot of tiny conspiracies. Its yet another reason why making research, and bureaucracy, totally transparent is so very important.

One of the problems in the current age is that bureaucratic processes and scientific processes are becoming more entangled. Governments privatizing essential government services is involved too.

Accountability is difficult if not impossible if you put essential functions of government outside the government. We have that issue here in Australia at the moment with a corporate database used by one of our regulators being considered for outsourcing to a private corporation.

What is undoubtedly happening is groups with similar agendas are supporting each other. This is what leads to Zombie Science, "science" funded and supported by vested interests and not evidence and reason.

So in many respects most claimed conspiracies are probably just business as usual politics and people acting in their own best interests. Much of the rest is due to failures in governance. Transparency and accountability are essential governance concepts.

If you move away from the notion of conspiracy into notions of ethics and morality, then its even murkier but there may be a lot more evidence that things are not what they should be. I have not thought about this nearly enough. I regard the MAGENTA trial as probably unethical, and any ethics committee approval is problematic. Not advising patients, prior to the PACE study, of possible conflicts of interest, is also probably unethical.

 

[alex3619]

I would be surprised if there is no concerted effort by the insurance industry to promote psychosocial ideas.

We have evidence of that in their own publications.

 

[alex3619]

The Gibson Enquiry called for a proper investigation TEN years ago. It's not too late to start one.

A Royal Commission or the equivalent seems necessary, with the power to compel testimony.

PS Any such inquiry would require a broad scope. Limiting the scope of an inquiry is a classic tactic to decrease the impact of the findings because they may not discover all the pertinent facts.

 

[Wolfiness]

I would really like it if we could make a compendium of all the reasonable and unfanatical posts trying to understand BPS's conduct that PR members have posted on the past couple of pages and many others. We should have a bank of counterexamples to refer people to when we are painted as extremists banging our fists off the keyboard in incoherent fury when we 'don't like the science [sic] '.

 

[Large Donner]

Politics turns to conspiracy, by my way of thinking, if there is a deliberate attempt to improperly sway the situation in their favour.

That's what the PACE obfuscation (preceded by and becoming the culmination of the 3 decades of deception) and the resulting and ongoing policy effect via NICE etc is.

Alex I think in a way you are contradicting yourself here. Also you are failing to understand the very legal definition of a conspiracy whilst at the same time you are defining one. Two or more people conspiring is a conspiracy. That's the legal definition.

I would bet there is nothing like a single conspiracy. Inside that, as in any large group of people working on an issue, will be a whole lot of tiny conspiracies.

A collection of conspiracies is just that, its a collection of conspiracies. There seems no value to me in saying "there is no single conspiracy". If I am understanding the view point you are coming from all you seem to be doing, is making the very valid claim in my opinion, that there are a number of people conspiring sometimes together sometimes not but you go on to seem to be suggesting "and therefore there's not a real "conspiracy" going on".

It appears to me that you are making the common error of defining a conspiracy as hundreds or even thousands of people all meeting in a room to deceive or defraud and "all being in on it at every level". People often dismiss the notion of a conspiracy on the grounds that "ah you couldn't get away with so many people knowing therefore there cannot be a conspiracy". At the top of a crime can be two or more people conspiring then all the way down different levels is "a need to know" sharing of info. Its just not a good enough defense to claim for example "well I was conspiring to cover up defraud and cause potential harm in my department that i had been aware of, but I didn't know what the guys above knew".

This is one of the games people like Wessely play etc in order to marginalize the people making the claim as deluded or at least to suggest.

There's even a video of him getting his presentation a bit mixed up one time and then saying "and they say theres a conspiracy going on look how disorganized we are".

In your case I think you are simply allowing the idea that "there's no real conspiracy cos no one group had enough people in it for it to be a conspiracy".

The issue here is the difference between conspiracy and politics. There is no question there is widespread political wrangling going on.

QMUL, Wessely, White, Sharpe, Chalder the NIH etc etc are not paid in the capacity of being politicians, they receive monies from the public purse to carry out scientific trials.

I can just see QMUL heads or any of the named above standing up on trial in court and saying in their defense against conspiracy to deceive, "ah mate what do you expect from me I am a politician".

Could a politician stand up in court and use the defense of "its just politics" against the charge of conspiracy? That in itself is no defense. Since when are politicians not chargeable with conspiring?

I would urge anyone who is confused by my post to look up the legal definition of a conspiracy and not to allow their understanding of what a conspiracy is to be muddied by the very tactics used by those who deceive in order to gain power control and money at the expense of others by means of fraud when the outcome can also meat the legal definition of causing harm or loss.

The belief in conspiracies is often used to make claims of delusion on behalf of the person claiming a conspiracy exists. This makes the possibility of carrying out a conspiracy easier than it may have been if one has a certain amount of power influence of funds.

 

[alex3619]

That's the legal definition.

Most legal definitions of conspiracy require a crime. I am using a broader definition. Collusion to circumvent principles or regulations, including ethical principles, not only committing a crime, is conspiracy in my view. I strongly suspect that a good percentage of even criminal conspiracies are due to stupidity, not intent. Of course a good percentage are entirely deliberate as well.

 

[Research 1st]

I would really like it if we could make a compendium of all the reasonable and unfanatical posts trying to understand BPS's conduct that PR members have posted on the past couple of pages and many others. We should have a bank of counterexamples to refer people to when we are painted as extremists banging our fists off the keyboard in incoherent fury when we 'don't like the science [sic] '.

Having a ministry of propaganda to spew hatred about the sort of 'person' someone with ME CFS is claimed to be, is an interesting political tactic to keep the proletariat oppressed.

Dictators tend to do this historically, to enable the annihilation of a chosen minority group - such as minority faiths.

Via media centric medical disinformation, no one generally cares ME CFS patients have been suffering and dying for decades, because we are considered below other people, because we are seen as deserving of our fate, as we chose to be lazy.

That view was propagated by psychiatry, utilizing the media, medical journals and in 'talks' give to fellow medical professionals.

For example:

“ Suicide is the only cause of death in CFS” (Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management. M Sharpe et al Gen Hosp Psychiat 1997:19:3:185-199).

The above claim by an esteemed Wessely School member, is false. Numerous patients have died from 'CFS' on this forum, and some deaths are even printed in the media or other sources when families chose to go public.

For example, in 2005 a young American man, Casey Fero, died of Myocarditis in his 20's. (RIP).
http://www.investinme.org/Article 011-Casey Fero.htm

There are endless dead CFS patients listed here to read up on:
http://www.ncf-net.org/memorial.htm

Because of how the public view ME CFS sufferers (how the media presents them), few care that it's a potentially fatal disease and young people are dying in the homes from medical neglect.UK psychiatrists recommend post diagnosis, further specialist tests are not performed, as this worsens the mind of the alleged somatizer. Of course, patients then die as a consequence because in medicine it is critical not to miss signs and symptoms of other conditions (such as heart failure, cancer, infections).

The BPS lobby ignoring thousands of biomedical research papers is intentional not an accident and is also a breach of the UK doctors code of conduct, upheld by the GMC, all doctors must abide by this. Additionally, UK doctors MUST keep their knowledge base up to date as part of 'good practice'. Denying a classified organic disease G93.3 ICD:10 is not keeping your knowledge base fresh, it is the antithesis of safe medical practice, hence CFS patients die.

The question I want to know if this. If patients are dying because of disease denial, who are the real extremists?

 

[alex3619]

The belief in conspiracies is often used to make claims of delusion on behalf of the person claiming a conspiracy exists.

This kind of thing is very old in politics. Its a common tactic. Its also much broader. It goes under the heading of demonizing your opposition, or arguing the man. It seems that there has been a deliberate attempt to paint us as irrational militants, and this is in the public view.

The big issue with conspiracy is proving it. Not suggesting, not implicating, proving. In the case of the improper use of statistics in PACE we have a chance to prove scientific fraud. Most other claims are not provable at this point in time.

Most of what is improper that has been done would not be considered criminal. Its perhaps unethical. There are issues with morality. It violates general scientific convention, but not convention found in similar research .. the whole field is on the line here. Psychogenic medicine, and BPS in general, relies on persuasive rhetoric more than science. I argue it should nearly all be thrown out of medicine, and considered, at best, fringe science.

Severe and repeated ethical violations are sufficient to suspend medical licences and end careers. Criminal violations do not have to be proven to do this.