Discussion in 'Action Alerts and Advocacy' started by natasa778, Sep 20, 2015.
More and more I find myself thinking that these agencies consider suicide to be a "not undesirable" outcome of their policies.
The US Medicare system's 18 month waiting period from the date of disability comes to mind. We can't get disability without medical records, yet Our Dear Leaders have determined that people too sick to work don't need health care for the first year-and-a-half of their disability.
What possibly rational reason could there be for this policy? Dear Leaders know damn well people die while waiting for medical care, by suicide and medical neglect, and yet the apparently irrational policy is not even discussed.
And then there's the scumbag Simon Wessely and his gang. How many suicides is he responsible for? He must be very proud that he has convinced 85% of US doctors that our illness is at least partially "psychiatric" and therefore it's OK to abuse patients.
I agree, however the key single player amongst the many actors of maintaining the CFS ruse are the government themselves who created the situation in the first place, for a reason they won't discuss but is rather obvious to all who aren't in denial (culpability). In order to deflect blame, they need someone to blame other than themselves. For that you need psychiatry to blame the patients (who have a brain autoimmune disease) for maintaining their own disability not by inflammation, but by alleged faulty illness beliefs:
Even in 2015, we have bizarre theories (selecting people with psychiatric fatigue - F48.- not ME) such as below quote, that continue to be funded, at the expense of biomedical funding (UK patients are themselves raising money for the UK Rituximab trial - as happened in Norway!). No government will touch serious immunology, but will fund this below to the tune of $8 million which is just supposition by the researchers, no actual changes in science variables are used in PACE, to ascertain if what the researchers believe to be true, is actually true! That is the beauty of psychiatry and psychology in terms of cost effectiveness to trap patients inside a belief they have a belief. It's cheap and effective:
''Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET. Changes in both beliefs and behaviour mediated the effects of both CBT and GET, but more so for GET. The results support a treatment model in which both beliefs and behaviour play a part in perpetuating fatigue and disability in chronic fatigue syndrome''.
Lancet Psychiatry. 2015 Feb;2(2):141-52. doi: 10.1016/S2215-0366(14)00069-8. Epub 2015 Jan 28.
Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial.
Chalder T1, Goldsmith KA2, White PD3, Sharpe M4, Pickles AR2.
Benefits and 'fit for work', just exploits this failure of science loop hole.
If psychiatry is 'evidence based' (with no scientific evidence), consequently, the people accused of having psych CFS, who don't, will suffer. That is having your benefits cancelled, and maybe dying of starvation, lack of heating, lack of access to medicines etc as you have no money to look after yourself or pay for care because your genuine disease based disability was proposed as manufactured in your mind, especially if you don't reverse it with CBT GET - which was proven not to work in psych CFS patients anyway, in the £5 million PACE trial!
Governments love this, no one is to blame in their circle, everyone gets a free ride to their next promotion, except the patients who cannot get access to medications to help them become less disabled, because the research isn't funded.
It must give some sociopaths of the 1950's great feelings of power to know they can keep millions of people disabled, on purpose, forever. If you're mad, think what that must do, to further motivate you to harm more people.
The same would happen if we still left psychiatry in charge of MS today. MS was said to be hysterical paralysis, when some forms of MS are fatal. Now it's our turn to suffer and after us, it will be the next condition caused by something embarrassing (vaccines, pesticides, lab accidents). It'll never stop, because sadly, humans are sometimes in part - evil and these people are a golden opportunity and themselves, can be exploited by the state for their own benefits.
This cannot be about money. Cost effectiveness is dismal, and failing to fix problems means that it costs more over the long haul. So they leave it up to us to come up with which theory explains their ineptitude. Incompetence, ignorance, conspiracy, stupidity, or ... ?
It may be about using money as an excuse to set an agenda that assists them to maintain power, or introduce yet other policies.
I agree, however it gets complex. Short term cost effectiveness is ultra cheap,and as you say, long term is poor as it costs the countries with 'CFS' billions in lost tax payers revenue.
But, there's a catch. The alternative (treating ME as a serious chronic disorder), is more costly. Here's why I think so:
Myself and all other people I know who are housebound are cared for by their parents. This means the vast majority of severe patients in the UK, aren't looked after by the state in a nursing home. Last time I look back, a 'nice' care home (not a nursing home) was running at £25,0000 a year. All of this money is saved, by using psychiatrists to cast doubt on the legitimacy of symptoms.
Lets look at extra monies saved by keeping patients ill on purpose.
The cost of adult growth hormone replacement therapy (one possible untreated requirement of ME) is around £10-12,000 a year. That won't be given if ME patients (who display al the symptoms) are never tested to rule this out.
Now if we imagine the others costs of immunotherapy (B Cell depletion, and IVGG, Antivirals, possible ARV's) the costs would spiral. We'd be talking, potentially, £50,000 per patient, per year, for decades.
That would cost the government, over a 30 year span (or until the patient dies) £1.5 million EACH patient! Conversely a severe ME patient on maximum benefits (all we get in UK) for 30 years, works out around £180,000 - £250,000 - sixth of the cost, Vs if ME was seen as 100% biomedical. 1/6 of the cost if you go mind-body.
It's thus much much cheaper to use psychiatry and blame the patient in social welfare health care system that provides 'free' healthcare. All you have to provide, at maximum, is a social welfare handout, and if possible just CBT GET and ignore the patient. This happens, because of the policy of making ME into CFS/ME into not much, into patients mind sustains disability theory.
A great way to save money and the billions wasted by keeping with BPS CFS is actually then peanuts. Hence the psych's love to boast about their 'cost effective' models, also then sold to the insurance industry who don't have to pay out for life time disability care in America. A win win, for them and a lose lose for the patient.
It is increasingly about face-saving, about trying to find a way to wiggle out of their culpability.
'OK, we admit it is not the main explanation, but it is still an important secondary factor.'
Oh bugger off.
Many of the treatments available are not cost effective. We lack good drugs. However if ME were considered a serious disease, and there were a concerted effort to get better sustained research, then we would make progress.
Rituximab could result in long term remission, if not cure, in responding patients over a few years. That will change the long term financial equation.
This thread is about general disability, not ME specifically. Not all issues are this severe. Also many disabled are able to look after themselves, though not much more. They get left to their own devices. Most disabled are not institutionalized, and so do not have such a high cost.
There are more and less cost effective ways of doing things. High end nursing homes would only be for the most sick, and only if they can afford to pay for it. The state typically has barely adequate nursing homes, run under contract on shoestring budgets.
Other simpler options are available too. I am on one. I get several hours of home support per week. Its far far cheaper than institutionalizing me, particularly since social support workers get paid chump change. They are not valued much by society, and this is yet another injustice. Family who help a disabled person are also undervalued. They save society vast sums of money.
I do agree that part of the appeal of CBT is cost. Its cheap. It also leaves patients who do not recover with the dastardly claim that they did not want to get better. So treatment stops.
Part of the appeal of CBT is ideology though.
It offers, within a BPS context, a formula for vast sweeping changes to society. They know how to fix the evils of the world. BPS offers pie in the sky solutions for the most part. Its not CBT that is the problem in this context, though increasingly its being realized CBT is not terribly effective and just changes perception of disease, not disease process.
The movement of BPS into social and political ideology is a huge problem. The only comparable movement in history is the eugenics movement. We are seeing this play out in a similar fashion.
Following on from what Alex said about BPS and CBT has it been noted that, given the nature of some other research undertaken, one of the leading researchers is likely to have signed the Official Secrets Act? Can anything published by any such person be trusted as science? Any work should provide a statement, alongside that as to competing interests, as to whether the researcher has signed and is bound by that legislation.
Yes, it's not about money per se, but profits, and whose profits are the most important. Costs to governments and individuals are irrelevant to insurance company profits. Plus all money spent by the government goes into *somebody's* pocket, and when those pockets are corporate rather than presumably dedicated and loyal public servants, there's every incentive to keep the money flowing.
Devaluing life in general seems to be a goal as well. Our Dear Leaders are facing a future world of billions of workers while all profitable labor can be accomplished with, say, only one billion. Maybe a lot less. So there's going to be billions of deprived unhappy people to deal with. Obviously there will be many excess people to dispose of.
The State will respond with repression, since that is the only tactic it knows. How could it be otherwise? Nation states by definition are a monopoly on violence, created with violence, and maintained with violence, when consent manufacturing is insufficient. While never hesitating to stop direct challenges with violence, most states prefer to minimize avoidable state murder, so that's not a good way to dispose of excess humans.
Seventy years ago Our Dear Leaders disposed of 80 millions, mostly civilians, over 3% of the world population. But multi-million-man armies are no longer needed, since any city on the planet can be smashed with just one bomb.
So maybe a little nudge towards suicide can solve more than one problem. I don't expect any policy documents, although there's likely to be memos and hints buried in official archives - it's amazing how many government crimes are documented by their own archives.
"Useless Eaters" like us are on the bleeding edge of these barbaric polices. But hey! Barbarism was good enough for Barbarians of old, why not the current crop as well?
BPS is hugely sympathetic with the thinking of the libertarian right, the idea that everyone is responsible for their own problems and should seek to solve them without help from the state.
It's interesting the way that this has played out in Britain. Far from withdrawing the state's help entirely, an entire infrastructure has been set up to hammer these ideas into the minds of those who might need assistance, from workfare and the sanctions system in the DWP to the blanket use of CBT in psychiatry, a tacit accusation that mental illness is just a way people choose to behave.
At every stage we have been told that our problems are entirely our fault and ours to solve. Where arguably the money spent could have been used to provide better advice and assistance, it is instead used to drive people into their holes, ashamed of their weakness and less likely to seek help. Tellingly, the only way to opt out is if you are already independently wealthy. Even those adjudged "deserving" of unconditional assistance know full well that such a status is never permanent.
The comparison with eugenics is tempting but problematic. Eugenics has some basis in reality, otherwise it wouldn't be used in animals, horse-breeding and the like. The problem is that it is simply inhumane to treat people like that. BPS seems to have next to no basis in reality, especially in it's current form. It is simply a cod-scientific trojan horse for a political project.
So do the pieces of BPS - biological, psychological and social clearly have some kind of interaction and set the context for disease. Its not the ideology that is fatally flawed, at least in original principles and not current practice, its how its used politically that is flawed. When unproven overarching theory becomes political doctrine then it becomes very hard to dispute, and can do enormous damage before its stopped.
PS the principles of animal and plant breeding are not the same thing as the mass movement. It was a social force that resulted in massive numbers of deaths. Just like BPS is doing.
. . .then there's the issue of moral bankruptcy.
You can only be morally bankrupt, if you had some morals to lose in the first place.
Power and morality are usually not good friends.
The Nazis were big on eugenics. Rather than eradicating the bad genes, they mostly succeeded in eradicating themselves and their ideology. Clearly eugenics as movement wasn't fit for survival.
The BPS school of thought isn't quite as radical and will probably continue to terrorize patients for a while still. As patients are becoming more informed and information is more easily available, I suspect that it will lose more and more ground.
Its not the doctors who are doing the most damage. Doctors do damage on small scale. Its the politics that is the big issue, damage on a large scale. Fortunately this ideologically based politics is failing. Outcomes, in the UK for example, are not even remotely like those promised. Its become a huge waste of money instead of a money saver. In fact there is nowhere its been a success., though due to lack of monitoring and transparency this is not so obvious.
If they had a profound success, anywhere, I think we would hear about it.
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