Tuller / Trial By Error: The Crawley Chronicles, Resumed

[Adrian]

It's why software has to be tested by independent test engineers, with their own test specifications. Even the most diligent and professional software developers will unconsciously test their software through execution paths they best favour as necessary, and may miss something a tester won't. EC's approach seems equivalent to a software developer deliberately avoiding certain tests ... "because there might be bugs in that area".

Because people notice if software doesn't work whereas with trials there is obvious way to see the results are spun. Whats more is many companies now offer bug bounties so that critical errors can be found before they lead to security issues. Such actions of detailed analysis would be called harassment by Crawley and the PACE authors. But its always interesting to read the level of analysis that is applied to software (and hardware/firmware) in order to try to crack the systems.

 

[Adrian]

My understanding is that the Lightening Process instructs people with ME/CFS, when asked, to say that they are well, regardless of what symptoms they are currently experiencing, they are instructed to deny the existence of their condition. Effectively they are being instructed to lie. If this was included in the 'training' provided in this trial, it raises a number of potential problems:

I think there is a further issue which is that the LP needs to be fully described in the paper in terms of whether it encourages symptom denial. If it is not then the reviewers and those relying on the research have no way to assess the methodology against potential biases.

 

[Inara]

I think it was funded by a couple of charities funded at least the feasibility study - but then the full trial was just an extension of that.

I think the Ashden trust funded £120,000 and the Linbutry trust £44,000
http://www.bristol.ac.uk/media-library/sites/ccah/documents/Letter from Linbury Trust Grant Amount.pdf

I somewhere read NHS was part of the funding, too. Sorry for this misinformation.

Edit: But NHS was part of the trial in other ways?

 

[Adrian]

I somewhere read NHS was part of the funding, too. Sorry for this misinformation.

Edit: But NHS was part of the trial in other ways?

It could be true. In that the NIHR (National health research) may have funded some since I think Crawley has a research fellowship with them which is basically funding her wages.

The charities seem to have agreed to fund the feasibility study rather that the full thing but there is confusion about which bit was which. Perhaps they don't know they funded more if they did?

 

[Amw66]

I can only speak from looking back as a teenager, but it would have been the worst time in my life to get some accurate data by asking me questions that involve self awareness, mood, fatigue, etc. It's almost like society already noticed this and gave the phenomenon a name.

I think that parental ratings would be much more accurate to see if there is any correlation with the trialists.

Think of the poor wee souls whose hormones naturally are doing a rollercoaster ride being given CBT for a growing number of conditions - if a perfectly healthy teenager cannot account for mood swings and emotions, identifying "triggers" may be an impossible task , leading them to self analyse more . Many do not last the full series of sessions, and yet there is no follow up to ascertain why.....

 

[Keela Too]

Here's something I've started to wonder about.

If psychiatric problems are excluded from income protection insurance, and other policy payouts (or the payouts are time limited),
then, surely it is in the interests of those same insurance companies to ensure as many people as possible can have doubt cast on their mental state?

This thought fills me with concern, as we see Psychiatry aiming to move into schools, workplaces and the various branches of healthcare.

I can't help but think the aim is less about helping those in need (indeed it seems those in real need, often have the hardest time accessing real help) but instead is about ensuring that the notion of questionable mental health touches as many individuals as possible?

 

[Amw66]

Here's something I've started to wonder about.

If psychiatric problems are excluded from income protection insurance, and other policy payouts (or the payouts are time limited),
then, surely it is in the interests of those same insurance companies to ensure as many people as possible can have doubt cast on their mental state?

This thought fills me with concern, as we see Psychiatry aiming to move into schools, workplaces and the various branches of healthcare.

I can't help but think the aim is less about helping those in need (indeed it seems those in real need, often have the hardest time accessing real help) but instead is about ensuring that the notion of questionable mental health touches as many individuals as possible?

It's about ticking boxes

 

[arewenearlythereyet]

Here's something I've started to wonder about.

If psychiatric problems are excluded from income protection insurance, and other policy payouts (or the payouts are time limited),
then, surely it is in the interests of those same insurance companies to ensure as many people as possible can have doubt cast on their mental state?

This thought fills me with concern, as we see Psychiatry aiming to move into schools, workplaces and the various branches of healthcare.

I can't help but think the aim is less about helping those in need (indeed it seems those in real need, often have the hardest time accessing real help) but instead is about ensuring that the notion of questionable mental health touches as many individuals as possible?

I think this is the vision that has been pitched to Theresa Mays government to help with aging population and the cost of healthcare for the mentally ill and chronically sick.

The way I see it Government has a few choices with healthcare

1. Tax the working more to pay for the increased cost of services
2. Withdraw or scale down services
3. Maintain services but make them more efficient
4. Offer treatments that increase the number of tax payers

None of of these work in terms of voter popularity apart form 3 and 4. But efficiency is not a big enough number/difficult to implement. The blunter tool is 1 and 2 but these have to be done with stealth and manipulation.

From governments point of view they need to "be taking the advice of experts" rather than be seen to directly influence things. This is why it's tempting for government to adopt certain psychiatrists to provide a solution that is cost effective.

I think it's no surprise that careers are being made promoting these artificial "treatments" that are option 2 dressed up as option 4.

The solution to debunking this can only be political...however any opposition arguments will encounter the same problem of people not wanting to actually pay for the required healthcare via their taxes.

For us, the only way to unlock this is to provide evidence that other treatments can put sufferers of ME back to work and paying taxes. That means all arguments have to focus primarily on productivity rather than quality of life. I don't like this, but I think that's what is needed to give the opposition the political arguments to fight this.

We need a treatment that is cheap and actually works before we can unlock the politics.

Meanwhile those medical professionals (used in the loosest sense) who put their careers above patient care will be able to prosper.

 

[Luther Blissett]

You're right in how they think @arewenearlythereyet , yet the fact is:

Taxes do not 'pay' for anything. They are a way of removing money from circulating in the economy.
Taxes create demand for currency.

A Government with it's own currency is not spending constrained. (It is the monopoly issuer of currency)
The only constraints are the number of (real) resources available, such as people and physical objects.

In short - UK is not spending constrained, Greece is.

 

[arewenearlythereyet]

You're right in how they think @arewenearlythereyet , yet the fact is:

Taxes do not 'pay' for anything. They are a way of removing money from circulating in the economy.
Taxes create demand for currency.

A Government with it's own currency is not spending constrained. (It is the monopoly issuer of currency)
The only constraints are the number of (real) resources available, such as people and physical objects.

In short - UK is not spending constrained, Greece is.

Yes I suppose theoretically an economic/mathematical model divorced from politics and opinion could exist without budgets etc. I'm not sure we live in that world though. I am constantly being surprised by how base human emotion drives most policy making ...and most of the time it seems to be based on quite self centered reasons as opposed to logical informed decision making.

I never studied economics and was rather handicapped in terms of maths (had to teach myself). But I would say that most people's theories on economics don't seem to work out that well when put into practice...just from a casual observation.

 

[Inara]

If psychiatric problems are excluded from income protection insurance, and other policy payouts (or the payouts are time limited),
then, surely it is in the interests of those same insurance companies to ensure as many people as possible can have doubt cast on their mental state?

I think that's definitely the case, at least in Germany. Insurance companies (occupational disability insurance) exclude payments in case of psychological causes. There are connections between medical associations (certain members) and insurance companies (I saw documents but didn't save them, then). There seem to be connections between some DEGAM guidelines authors and industry/insurances (see proclamation of conflict of interest on their homepage).

I remember there were also connections between Mr. Wessely and insurances, but don't find the source.

I think that economic topics/money may be THE reason why psycho stuff is pushed.

Edit to add: WikipediayDE critisizes about DSM that the number of diseases continually increased from 106 to 374.

A study by the University of Massachusetts Boston found that 69% of DSM-5 employees had connections to the pharmaceutical industry; in the working group on affective disorders it was 83% and in the authors of sleep disorders it was 100%.

https://de.m.wikipedia.org/wiki/DSM-5

 

[Barry]

Here's something I've started to wonder about.

If psychiatric problems are excluded from income protection insurance, and other policy payouts (or the payouts are time limited),
then, surely it is in the interests of those same insurance companies to ensure as many people as possible can have doubt cast on their mental state?

This thought fills me with concern, as we see Psychiatry aiming to move into schools, workplaces and the various branches of healthcare.

I can't help but think the aim is less about helping those in need (indeed it seems those in real need, often have the hardest time accessing real help) but instead is about ensuring that the notion of questionable mental health touches as many individuals as possible?

It actually goes beyond this @Keela Too, and has been touched on before. My understanding is that people with psychiatric problems are excluded from the benefits which entitle them to NI credits, which means they are also being denied their rights to a full state pension, years down the line. Which to me speaks volumes about why the DWP might have been additionally motivated to part fund PACE. I raised this on PR quite a time back, but was not the first.

 

[Allele]

I believe there are documents supporting @Keela Too 's thoughts.
IIRC they were notes from a panel wherein maybe wessely was advising insurers or ATOS or some such?
Memory shaky on the details but it was plain as day that the agenda was to get as many people as possible off benefits.

 

[Esther12]

IIRC they were notes from a panel wherein maybe wessely was advising insurers or ATOS or some such?

I don't think that's right, although Wessely has worked with the DWP in various questionable ways. His links to insurance companies are much weaker than those of someone like White too. He's attended conferences funded by them, wrote a piece for Unum (http://web.archive.org/web/20081030...ome/AccessiblePDF/CMOReport2007.htm?UPCC=True), was involved with an insurance rehab group, PRISMA, although he said it was not for long and he was not paid.

Wessely is linked to people linked to ATOS, but I think that if there was evidence that he was directly involved I'd remember it.

 

[Allele]

I do get White and Wessely confused a lot. As well as ATOS and UNUM.
They all go in the Team Evil file of my brain.

 

[Inara]

UNUM is an insurance company? And what is ATOS?

 

[Esther12]

And what is ATOS?

They're a private company notorious in the UK for doing poor quality disability assessments that led to lots of seriously ill people getting thrown off benefits. IMO - they got more blame than they deserved for the government's policies.

 

[Luther Blissett]

Yes I suppose theoretically an economic/mathematical model divorced from politics and opinion could exist without budgets etc. I'm not sure we live in that world though. I am constantly being surprised by how base human emotion drives most policy making ...and most of the time it seems to be based on quite self centered reasons as opposed to logical informed decision making.

I never studied economics and was rather handicapped in terms of maths (had to teach myself). But I would say that most people's theories on economics don't seem to work out that well when put into practice...just from a casual observation.

I understand, but what I said was just a simple matter of accounting, instead of economic theories.

If we agree that if I give you $10 then the account would be

me + you = 0
-10 + 10 = 0

The truth of the equation depends only on the two simple facts:
(1) In every transaction, money comes from somewhere and goes somewhere, and the amount that comes (credits) equals the amount that goes (debits), i.e., the transaction balances.
(2) If you add up the same numbers two different ways, you’ll get the same answer both ways.


then my comment is correct.

• (I – S) + (G – T) + (X – M) = 0

(I – S) = private sector balance
(G – T) = public sector balance
(X – M) = foreign sector balance

I = investments
S = savings
G = Government Spending
T = Taxes
X = Exports
M = Imports

(See attached graph from the Office of National Statistics for how this looks in percentanges. Note everything balances to zero.)

Is how Government accounts are worked out. What people choose to take from that is a matter of politics, philosophy, sociology etc.


The fact that basic accounting is viewed by suspicion is a great example of the trouble economists cause. (Maybe they should spend less time theorizing about human nature and more time adding things up to see if they make sense)

I just mentioned it because to my view, the idea that taxes 'fund' spending is a very dangerous one in discussions of healthcare and ME research.

I understand that these simple facts look like gibberish or madness, but that is not my fault!

 

[Barry]

UNUM is an insurance company? And what is ATOS?

They are one of those massive companies that seems to be a jack of all trades and master of none. Where I work, much of the IT infrastructure is "managed" by ATOS.

 

[Wonko]

@Luther Blissett

You seem to missing modern creative accounting exploits from your explaination, or understanding.

You know, the whole making money out of malodorous air approach, as employed by governments, banks etc. generally resulting in more turnover than the entire global economy actually generates in a century on balance sheets, as fictional money that then becomes a problem when people try to treat it as/mix it with actually real resource based money.