In Expectation of Recovery: Why the UK government buried ME

[Countrygirl]

A report revealing why the UK government buried ME.

"In the Expectation of Recovery"
MISLEADING MEDICAL RESEARCH AND WELFARE REFORM
by George Faulkner

Back in 1995 a Unum report on CFS stated that they could "lose millions if we do
not move quickly to address this increasing problem".[96] It was argued that CFS claims
should be managed "more aggressively and in a proactive rather than a reactive fashion"
while attempting to present CFS as "neurosis with a new banner". Emphasising the
importance of psychosocial factors and classing CFS as a mental health problem could
bring immediate financial benefits to insurance companies when policies limit payouts
for mental health problems. One of the PACE trial's principal investigators gave a
presentation on the results of the PACE trial to Swiss Re insurance. Swiss Re's report of
his talk detailed the potential use of mental health exclusions to cut payments[97], while a
2013 Swiss Re presentation on their approaches to mental health problems describes their
use of specific exclusions for CFS and ME.[98]

In 2002 all three of the PACE trial's principal investigators, along with Aylward,
Waddell and Wessely, contributed to a conference and book which promoted the use
of the biopsychosocial model.[127] The book was made up of conference papers and
transcripts of discussions, and includes Waddell explaining how the biopsychosocial
model was gaining political influence:

"It is all about money. The main thing was to persuade the treasury that there
was an opportunity for keeping costs down, particularly over the longer term."
In response to another participant saying "if you go to Gordon Brown (UK Chancellor)
and say, 'We can prove to you that if we address this issue, we can save £2 billion', then
you will have his full attention", Mansel Aylward replied: "That is the approach that has
been taken, but not in such a robust fashion."[127]

Their discussions explained how, within government, the antipathy caused by the
view that the biopsychosocial model lacked a hard evidence base had been overcome
by the softer evidence of "authoritative and expert opinion". Unfortunately, those
selected for their authoritative and expert opinions may not have risen to positions of
influence because of their moral integrity and intellectual rigour. Systematic reviews were
also described as being important for changing the views of key opinion makers, yet
systematic reviews may merely combine results from a number of different non-blinded
trials, putting aside problems with bias and making potentially misleading results appear
more reliable than they truly are. [135]

If politicians are not willing and able to engage critically with the scientific and medical
evidence presented to them they could easily be manipulated.
Gordon Waddell pointed out that evidence may not even be what is needed to change
people's minds:

"To take this a stage further, I am not sure that evidence is what convinces people.
We do need an evidence base, but it is ideas that really influence people. People
go to war for ideas, not for evidence. When you look at changing practice, it is
really about ideas rather than evidence."

The biopsychosocial approach to disability was an appealing idea (to some) lacking a
solid evidence base. It has now been used to present cuts to the incomes of sick and
disabled people as a caring intervention in their lives.
The power of the 'evidence-based' label

In 2006 a Parliamentary All Party Group inquiry into CFS/ME claimed that:
"There have been numerous cases where advisors to the DWP have also had
consultancy roles in medical insurance companies. Particularly the company
UNUM Provident. 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 Group find this to be an area for serious
concern and recommends a full investigation of this possibility by the appropriate
standards body."[100]
Perverse incentives
"It is difficult to get a man to understand something, when his salary depends
upon his not understanding it!"[101]

 

[alkt]

how old is this paper the links with insurance companies have been known for a very long time. still nice to see in a well written form .

 

[Countrygirl]

how old is this paper the links with insurance companies have been known for a very long time. still nice to see in a well written form .

I have only just come across it and wanted to post it before I lost it, Yes, we have known about the shenanigans of the mid 90s for some years, but it is a useful piece of evidence and worth keeping for future reference. What I haven't seen for a long time is written documentation of the meetings of 2000/01........I think it was at Woodstock which took the above a step further, if I recall correctly. I read about it some years ago, but haven;t seen it since.

 

[Mary]

how old is this paper the links with insurance companies have been known for a very long time. still nice to see in a well written form .

It was published in April 2016 - not that long ago.

 

[Seven7]

I don’t know about Uk law but how is this legal if there is premaditated intention ?

 

[SilverbladeTE]

I don’t know about Uk law but how is this legal if there is premaditated intention ?

the long standing English law definition of murder is:
homicide with malice a forethought

usually that means deliberate intent to kill, and/or particularly heinous acts, such as torturing to death or using a bomb etc where you cannot claim there was no intent or likelihood to cause extreme harm

manslaughter (culpable homicide in Scots law) is when you do an act that is likely to cause harm but have no serious intent to cause extreme harm or death, like a punch up in a pub causing death due to fall, brain damage etc
and for doctors it may apply if they cause death by neglect but not neglect to a gross extent
for example, if a medical record warns not to five a blood thinning agent and the doctor still does give an unwitting patient such a drug and they die, that's probably manslaughter
if the doctor however joked to a colleague that he was "thinning the herd" BEFORE the death, that would imply deliberate knowledge beforehand of causing death which could then bump it up to murder

death by misadventure is when there is no intent to cause harm at all, nor any expectation of causing harm (which is crucial aspect)
for example a doctor gives a patient a drug that causes an unexpected adverse lethal reaction, but there was no reasonable evidence it would do so to an EXCESSIVE extent of risk, or, the patient was warned of a specific risk and accepted it.

if a doctor CHOSES to neglect or wrongfully treat a patient for personal gain or bigotry or sadism, and the person dies, then that is murder.

the only legitimate excuse for neglecting a patient is essential needs forcing hard decisions, for example, desperate cases such as triage in civil or military emergency (bombing, earthquake etc) where you simply cannot treat everyone fully because you maybe dealing with hundreds of wounded and dying victims, and thus are forced to treat only those you can practical help with limited numbers of physicians nurses and medicines etc

the actions of the psychiatrists etc in our case are, IMHO, murder
in fact, it is genocide, deliberate, premeditated acts designed to cause extreme suffering and deaths of a huge number of people.

of course this is the UK, and those of the "Establishment" can murder, rape and rob ANYONE and get away with it because the System is so corrupt, as recent events have proven time and again
however, if we can get the bastards for genocide...then they can be tried in the Hague for crimes against Humanity

 

[Deepwater]

Just illustrates the point that politicians are concerned purely with saving money, and most of them will never take the trouble to investigate the facts. If we are to overturn this policy of psychiatrising physical illnesses, especially our own, we have to speak to politicians in a language they understand.

Of course the BPS policies have saved the U.K. government no money on ME because they've made us sicker and condemned many who may have recovered in first few years given adequate rest to lifelong incapacity. Worse still, doing this to us has cost the nhs money as well as depriving the Treasury of revenue from those who would otherwise have recovered enough to be economically active. And I dread to think of the cost to the NHS of sectioning ME patients for intensive ‘therapy’.

We have to get politicians to understand that, even in the absence of a pharmaceutical cure or reliable treatment, recognising the biological reality and seriousness of the illness and supporting people to rest and pace safely is actually going to save the country money, and that the only beneficiaries of the BPS ME denial policy of recent decades have been the individuals who promoted it and the private health insurers. People with genuine mental illnesses have suffered from this too (and so presumably also become economically less productive) as funds meant for their care and support have been misdirected elsewhere.

We have to engage government ministers and their advisers speaking a language they understand.

 

[Learner1]

This is not just about the UK government. It likely affects most of us in one way or another.

I had multiple doctors recommend psychotherapy or CBT or offer antidepressants when I wasn't depressed or anxious, just sick. And when most disability policies in the US cut people off after 2 years if they are diagnosed with a psychiatric proble, this can be a big issue.

Aware of this, I persisted in finding doctors who were curious enough to do lab testing which showed a plethora of abnormalities and began treating them. So, after 2 years, when the disability company asked for all of my medical records, they could see that I had serious medical problems and was undergoing serious treatment, and they couldn't cut me off with the psychiatric excuse as I had never gone to CBT or taken a psychiatric drug, knowing that if I had, it could be a problem.

It behooves us to treat this as the serious medical problem it is, not be bullied into accepting a psychiatric diagnosis.

 

[Deepwater]

Hi @Learner1, I wasn’t suggesting that we should allow ourselves to be bullied into accepting psychiatric diagnosis or treatment - I never have, and neither did any of those poor people dragged from their sickbeds by the men in white coats and into enforced psychiatric care.

Whilst I commend your tenacity in getting tests done, the situation in the UK isn’t simply driven by doctor prejudice so it isn’t just a case of seeking out an unprejudiced doctor. There are some doctors who would like to treat us properly, but there’s not an awful lot of point at present in looking for them because they are constrained by a system which imposes the BPS model.

Over here doctors do not have the freedom of action they do in the US, and government/ NHS policy pretty much dictates a stark choice between maltreatment on the one hand or utter neglect on the other. This is why changing the NICE guidelines has been so crucial for us, and why the proposed changes to the WHO classification system are so concerning. The authorities have imposed psychiatric treatment on us in the belief it will save them money. Until they understand the falsity of this premise I do not believe that real reform is possible.

 

[Learner1]

Oh, I totally agree with where you are coming from and your goals.

However, gaining access to proper treatment here in the US tends to be for the well to do, as we rely on health insurance to pay and its pretty easy to lose employer based health insurance here and even with insurance they are unlikely to pay for anything experimental or treatments and tests that don't have the right ICD10 code attached.

Getting on government disability is extremely difficult, and one has to have been out of work and without income for a long time. And Medicare and Medicaid have limited doctors and treatments they will pay for.

So, to get useful treatment, one must pay out of pocket in the most expensive medical system in the world. I've made a lot of progress but I've spent over $250,000 out of pocket for my diagnosis and treatment, and I fully realize how hard it is for others to do the same, especially as the path most of us are on is littered with unproductive visits who doctors without the training or knowledge to help us. Most in the US run out of resources to fight this battle before they get any meaningful help and then are stuck in this ME/CFS hell.

So, some of us are a bit envious of your system where disability seems easier to get and medical care is free...when we are paying huge sums monthly for care on limited to no incomes...

The truth is that there are different barriers to quality care in various countries. Also, we have a heterogeneous set of problems with common symptoms. What we need is a toolbox full of diagnostic tools and treatments that ME/CFS patients can access through informed doctors. I'd found this site a couple of years ago and was impressed with what they'd gathered and their approach. It would be nice to update it and advocate for all of us to have access to it. You can click on "Treatments and Diagnostics" here:

http://www.me-ireland.com/

We all deserve a chance to get well, no matter where we live...

 

[SilverbladeTE]

Just illustrates the point that politicians are concerned purely with saving money, and most of them will never take the trouble to investigate the facts. If we are to overturn this policy of psychiatrising physical illnesses, especially our own, we have to speak to politicians in a language they understand.

Of course the BPS policies have saved the U.K. government no money on ME because they've made us sicker and condemned many who may have recovered in first few years given adequate rest to lifelong incapacity. Worse still, doing this to us has cost the nhs money as well as depriving the Treasury of revenue from those who would otherwise have recovered enough to be economically active. And I dread to think of the cost to the NHS of sectioning ME patients for intensive ‘therapy’.

We have to get politicians to understand that, even in the absence of a pharmaceutical cure or reliable treatment, recognising the biological reality and seriousness of the illness and supporting people to rest and pace safely is actually going to save the country money, and that the only beneficiaries of the BPS ME denial policy of recent decades have been the individuals who promoted it and the private health insurers. People with genuine mental illnesses have suffered from this too (and so presumably also become economically less productive) as funds meant for their care and support have been misdirected elsewhere.

We have to engage government ministers and their advisers speaking a language they understand.

alas, they simply do not give a damn, this has been proven time and time again
recent acts by the UK government is incontestable evidence of outright MALIGN INTENT against the Public, against the safety and good of the nation.

I'll give you an odd example:
all the media ratbags crow about how the Uk has built two huge aircraft carriers...but they forget ot mention THEY HAVE NO BLOODY AIRCRAFT FOR THEM!
the politicians did dirty deals, so we're being foisted by the grotesquely over priced and complete unreliable unsafe and unusable and not in service piece of excrement F-35 aircraft
one of the worst military screw overs in history, and the scum in America's government tried to get the superb A-10 aircraft got rid of, so they could get lots of lovely bribes to buy the obscenely over priced and useless F-35

wee fact of history: the Allies won World War 2 largely because we enormously out produced the Axis
the military needs *lots* of reliable, cheap equipment, with some expensive specialist stuff
instead, the corporations and bureaucrats/politicians they own push expensive garbage onto our defenders...that gets them killed and has left us extremely vulnerable if major war breaks out
it's typical of Britain that our loony government is trying to start a war with Russia, while our soldiers have been cut to absurdly low levels and they STILL have that piece of shit SA-80 rifle (which is another perfect example of what I'm on about, that gun killed soldiers, blowing up in their faces or magazines falling out in combat so enemies shot them etc etc, and even after 2 redesigns it's still crap!)

UK, nation that invented the harrier jump jet and many other aeronautic feats and marvels...no aircraft for our carriers.
Think about that....to my mind that is gross treason when added into the appalling wipe out of the armed services EXCEPT for the nukes. We have one, ONE bloody destroyer left to guard the WHOLE of the UK and iirc, exactly FIVE minesweepers and that is IT.
What kind of politician accepts that?

then add in how the politicians have let slide enormous money laundering int he City of London, and many other despicable acts and crimes, the "Windrush" folk are just most recent *publicized* victims...many more have fallen silent

I was down to 2 weeks of food and £20 left in the bank...because the DWP screwed me over AGAIN (stopped all income), and I had to use my food stores because of the bad weather.
thank God social worker fought for me and got money this week or guess what I'd have ended up doing?

120,000 people have died in the UK because of the "austerity" bullshit...and it IS bullshit as history and economics prove Austerity does not work, has never worked, always causes extreme harm and is part of the reason why the NAZIS got power in 1933 (fact)
it is just an excuse to abuse and kill folk, so scum feel powerful
an excuse for the rich to evade paying tax and supporting the society they PARASITIZE
no, the rich do NOT deserve their wealth and rarely ever actually help build things more than they cause harm...there's a huge difference between a "rich" and "well off" and a genuine entrepreneur versus a sodding asset stripping crook!
I know because I've known people from all walks and wealths, and also read history
most folk who get really dirty rich get that way because they are EVIL SCUMBAGS, they just sell all this "trickle down" and "you can make it too!" bullshit to con damn fools into supporting them, and laugh when the fools die of poverty or on the battlefields

so it's pointless trying to appeal to their "better nature" because they don't HAVE a better nature!
or genuine logical self interest because they are so greed/ego obsessed they only see short term enrichment of themselves and derive pleasure from abusing and killing people

that is one of the HUGE dirty secrets of life:
the greatest power and thrill for these evil maggots, is that they can kill with impunity, that is the proof and joy of "real power" for them

this scene from "Manhunter" puts it perfectly, and it's true alas. I've also dealt with evil people that is how they think
so bureaucrats, psychiatrists, Cabinet Ministers who know their actions will rub out folk like me, get off on it

(best "Hannibal lector" film IMHO!)