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BBC spewing Sharpe's CBT Manure again

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do not think we can be successful to counter spin with an ME focussed media group. It could have an impact, but not much. We need to think bigger. We need to counter spin with science, not just for ME, but for every aspect of public medicine that is subject to distortion. As a PR concern, this means we will have to merge with other diseases and causes. I envision the PR organization would produce press releases about ME to correct misinformation, but also press releases about MS or ATOS work capacity assessment, or whatever other issues affect the public of the day. This could involve almost anything, from vaccine concerns to questions of public health in the future.

Bye, Alex
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Writing professional-looking press releases is something that I've thought about as well. We could, in theory, set up a new informal 'patient organisation', and use some official looking headed paper, and create our own press-releases. The trouble is that once I start thinking about the amount of work involved, it all becomes overwhelming.

An official press release from a patient organisation, about the actual results of the PACE Trial, would be handy though, esp if it was written in such a way as to attract the attention of journalists.

alex3619 I think that AfME belongs to an umbrella disability organisation (I can't remember the name) which seems to do some useful work with benefits and ATOS. Maybe the various neurological patient organisations need to form an umbrella group as well, if there isn't one already.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Bob, this is indeed a large, complex and expensive undertaking. Thats one of the reasons I think it has to be something developed by a very wide alliance. The costs per issue come down if the system is funded and organized broadly, plus a broad base will increase the chances that it will attract financial support. Bye, Alex
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
It won't work
You have to realize that this is indeed a "conspiracy", one of mutual need, not wanting to hear dissent, pushing the "mission statement" etc etc, not "New World Order"
Our "systems" simply do not want to know
And they are tied in deeply with the media, because the media is at the heart of controlling the population, and the scumbags know this. See Levinson Enquiry in UK if you doubt me on this, the cosy cronyism whereby the UK's Prime Minister was personal friend of Murdoch's head honcho in the UK...

Big Brother *IS HERE*, it's just not in the way folk thought because Goerge Orwell had only seen the nazi and Stalinist style of modern despostism, not the far more organic, more stable and less damn hard to pin down and behead "Corporate Fascism" we've seen strangle our Democracies.

Sounds crazy, until you look at slime like the Science Media Centre, the hacking scandals of the tabloid press, the wya Murdoch ( a media baron) helped push the UK into a war, the way the BBC has had it's more robust and iconoclastic leaders removed and neutered to have a bunch of "Nodding donkeys"...and so on and so forth.

The ugly truth about "Evil" is that it is utterly banal and petty. There is no Star Wars type "Emperor", no grandiose Fu Manchu hiding away in some secret lair, no Illuminati (well bar bunch of rich old bastards meeting up in clubs and plotting how to screw more out of everyone else)
It's just lot of rich sons of bitches who lead lives so removed form the norm, and with personalities so weak or vile they simply do not care or rather to be actually precise, have true empathy with the "lesser people"
So they play games to control and dominate. To get their people in positions of power, thus a few thousand folk basically contrpl the UK, not Parliament
many of those "Elites" sitting on multiple boards, committees etc

Knowedge is power, media is power...so they control it, to control you.
Ya get the Science Media Centre, now, folks?
One handy dandy OWNED AND CONTROLLED package for pushing Their agenda.
This is how it's done today, they don't need the N.K.V.D. hammering cartridge cases into your knees for bad mouthing Stalin, they can jsut weaken, muffle distort your attempts ot wake the "sheeple".

Do you all get the irony, the slyness, the evil of those bastards setting up ATOS, so they can throw folk off disability, and then make money from ATOs itself, hm?
Gotta hand it to them for being devious scuzzballs :p
Money sucked out of the Public purse into....the Corporate purse, and those with the right connections earn massive pay form this.
£800,000 a year the guy in charge of ATOS makes. Which is enough for what, 70? disabled people's payouts per year
and that's just ONE fatcat.

Thing is, ME is just one problem they've sidelined to the gutter
As the recent Rio conference showed, the governments heed their corporate, party and idealogical masters NOT their own People's best interest.
I would hope this years catastrophic weather might finally drive "finger into a bloody palm" for some folks out there.
A mere bagatelle, a foretaste for the catastrophy looming ahead...which is indeed, inconvenient and thus, is ignored/lied ot death.
Yes it is just "probability" but it's much the same odds as putting 5 bullets in a revolver and putting said gun to your grand or greatgrand children's head. Only a lunatic would take those odds...and indeed, they are lunatics
Local weather changes could be bad but it's the famines and resulting dozens of utterly genocidal wars that will be the real horror 50+ years from now.
But Mr Coal-CEO doesn't give a crap, evne when he's seen the evidence by guy's he's hired to check it...so he pays for a PR guru
the PR Guru sets up fake bloggers, websites etc, all quite cheap by the standard of advertizing costs and hey they can outsource microtasks to thousands of e-workers, as well.,,and they spin lies.

So frankly, you have JACK SQUAT chance of getting anyone ot listen, they have not listened for over 30 bloody years.
If they are willing ot risk scorching the Human Race out of existance 100 years from now, just for the next month's proifts, do you think they give a damn about us or won't sideline us, hm?
The inhuman suffering and death they cause means nothing to these bastards....they do not want ot know.

Our inept, nepotistic, corrupit,greedy and stupid systems are heading for complete meltdown, everyone with half a brain knows it.
I'm not Che Guevara though ;) Alas, Humanity can only learn by suffering the consequences of its own damn folly, not by forcing revolutions or dictatorships etc
those at the "Top" think they should lead Humanity by the nose, brutally (in a velvet glove) if necessary "for the common good". Wrong. Stupid. Suicidal.

So, only some great event, tragedy or slowly over time will it change.
Again, this does NOT mean I want "violence, revolution, dogs & cats living together" :p
You cannot make folk see the truth, they have to learn it themselves, and that is usually painful

The Public have been given the opiate of the masses of the 20th century: Consumerism
that and other issues as well as the deliberate destabilization by those "Inc harge" has left them with little room/wish to truly rebel, truly rise up and dmeonsrate
3 million marched against the 2nd Gulf War int he UK, achieved nothing
leading to powerlessness, hopelessness...
the government/elite's very own schemes are underming everything, they are too damn blind ot see this though.
Collapse is inevitable.
More you try to control, more you build up issues that will burst out and drown ya one day

Want to do somehting useful?
Get on some live TV debate show, like Question Time, and straight up accuse the government of covering up and slowly killing off ME patients, THAT will get vastly more results than any other way that they will "air brush" out of any usefulness.

You cannot win by playing them at their own game, again, this is why they set up things like the Science Media Centre to control to spin and unify THEIR goals.


sorry for somewhat "Basil Fawlty" rantiness, but....it's like watching the Titanic...or last days of the Czars...Fall of ROme...sigh
 

Enid

Senior Member
Messages
3,309
Location
UK
That's a telling (revealing) comment by Paul McCrone of Kings who is so encouraged. Note his qualified conclusion based on "existing Nice criteria" (ha ha). And where is specialist care in the UK anyway - during my ME developing days I was was told there was nothing wrong with me and as health declined denied any antibiotics though I knew full well that infections were taking hold.

My points are that a) he is covered by Nice who haven't the knowledge of current research findings and b) general (GP) medicine is equally ignorant with an "all in the mind" diagnosis as their simplistic (and out of date) tests reveal nothing. Psyches trying to hang in there at all costs it seems to me (by the skin of their teeth).
 

currer

Senior Member
Messages
1,409
You are right, Silverblade, unfortunately.
I think our civilisation is headed for ecological disaster, and this is just the beginning. There is no political will to do anything to avert this, so why should they bother about us?
I think I can see the desire for another war growing, as well. Once a culture abandons sanity this is the only route it can take. How does one oppose this mass sickness?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Currer
Hm, do you deal with it...*ponders deeply*

1) Take hold of one's ass with both hands
2) Kiss it good bye! :p

On more serious note, I think this will be one of the great "turning points" in Human history, like the Renaissance
I just hope it becomes a "Renaissance" and not a "Hecatomb"m but even with a "renewal", it will still come at a very heavy cost.

Fixing things goes more into politcs than health though but fact we let so many "sociopaths" be unchecked in our societies is part of it.
As said before, you are four times more likely to meet a psychopath in Big Business than anywhere else in society bar prisons/aslyums
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There are only two broad roads before us. Give up and let them win, or fight for reason. I refuse to give up, period. This post is a bit broad and rambling. Read at your own risk.

The SMC has a pervasive effect because nobody opposes it. The psychobabble groups have a pervasive effect because the authorities that should oppose it are failing. Its also enhanced by prevailing influences that support them, a phenomenon called Zombie Science. The psychiatric lobby are largely unchallenged, and their Zombie partners are big pharma. I do not think there is a pervasive or widespread conspiracy. I think its more a perfect storm of localized micromanaged competence breading global strategic incompetance. This also fits with the current political systems of short terms and the current issues in media with downsizing the journalist departments, twenty four hour news cycles and simple regurgitation of press releases without checking facts.

This can be countered. Its not easy. It is possible. There are no easy answers. There are no quick fixes.The internet is a huge boon for this purpose.

That does not mean there are not problems. At this moment one of Australia's security organizations, ASIO if I recall correctly, if trying for the power to tap all internet access by Australian citizens, with particular emphasis on sites like this and Facebook etc, plus emails. Big brother is about to be watching here as it already is in other countries.

Most people, organizations and governments have a very limited horizon. Anything close they will look at. Anything on their distant horizon they might speculate and reassure people about. Anything over their horizon they ignore. They look for support for their view, and amazingly they find it. The UK medical bureaucracy support psychobabble, and vice versa. Its not a conspiracy. Its them doing what they are set up to do. Yes its irrational, and yes its failing, but they have no interest in the big picture, just their own agendas. That does not mean that there are not individuals who know exactly what they are doing with regard to misinformation. I am trying to make a case for that in my research. I just do not think that is the only thing going on.

We lack strategy, not just as an ME community, but the whole world lacks strategy. There is no big picture. We just muddle along. Unfortunately that will not work for much longer - the issues arising will not sustain it. We don't have a looming crisis - we have dozens of looming global crises. Business as usual is about to become failure as expected, though the time horizon for this is likely to be decades.

Various groups and individuals can see the big picture, they see what is necessary (though the views are fragmented). Such groups need to organize their own press responses, need to galvanize the general population. It will not be easy, but there is no other game in town.

I have had doom and gloom scenarios lurking in the background for a long time. I came up with some of them in the 80s. Largely I ignore them in order to focus on solutions. There are solutions, but nobody ever said they would be easy.

The psychobabble crowd are going to lose. Soon. They know it. Thats why they are using the strategies they are. Its a dying branch of medicine. Of course soon might still be a decade or two away, and I want it to happen now. Sigh. The PACE papers are the Rosetta Stone telling us just how feeble their science is, whereas the biomedical research is slowly unravelling the pathophysiology of ME.

The grounds now exist for us to fight them in the courts, in my opinion. Grounds to lodge formal complaints against medical professionals spouting unsubstantiated babble. We can also lodge complaints about ethics violations with various bodies, both medical and scientific bodies. They practice speculative unsubstantiated experimental medicine, and the results of the PACE study show this for what it is. If they left it as hypothetical enqiries that would be one thing. Trying to implement such strategies against our will is, in my opinion, clearly unethical and possibly criminal depending on the laws in the individual countries in which they practice. The biggest stumbling block we face is that there are specialized laws in many countries to limit action against doctors. Mostly this is aimed at limiting financial compensation. So the answer is simple: go after them for other reasons. Injunctions, ethics violations, criminal behaviour. This isn't about money. Its about public health.

I have more to say but its past my bed time. So for tonight, sweet dreams.

Bye, Alex
 

currer

Senior Member
Messages
1,409
Civil society breaks down when the institutions that generate it are corrupted and weakened so that they fail.

Russia has never valued or protected the rule of law, for example, and that is one reasion why it is such a failed state even though individually its citizens can be heroic.

Our institutions, the ones that should protect the citizen, are corrupted now and unable to protect the citizen against encroachment and exploitation. Individuals are powerless as individuals to change these huge systems - that has been one of the destructive effects of the emphasis over the past decades on "the individual"
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The grounds now exist for us to fight them in the courts, in my opinion. Grounds to lodge formal complaints against medical professionals spouting unsubstantiated babble. We can also lodge complaints about ethics violations with various bodies, both medical and scientific bodies. They practice speculative unsubstantiated experimental medicine, and the results of the PACE study show this for what it is. If they left it as hypothetical enqiries that would be one thing. Trying to implement such strategies against our will is, in my opinion, clearly unethical and possibly criminal depending on the laws in the individual countries in which they practice. The biggest stumbling block we face is that there are specialized laws in many countries to limit action against doctors. Mostly this is aimed at limiting financial compensation. So the answer is simple: go after them for other reasons. Injunctions, ethics violations, criminal behaviour. This isn't about money. Its about public health.

I have more to say but its past my bed time. So for tonight, sweet dreams.

Bye, Alex

There needs to be a class action done on how biased governments have been towards our illness, systemic abuse which occurs and the harm its caused many of us as individuals. If all this stuff was analysed in court, it would look real bad.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Civil society breaks down when the institutions that generate it are corrupted and weakened so that they fail.

Russia has never valued or protected the rule of law, for example, and that is one reasion why it is such a failed state even though individually its citizens can be heroic.

Our institutions, the ones that should protect the citizen, are corrupted now and unable to protect the citizen against encroachment and exploitation. Individuals are powerless as individuals to change these huge systems - that has been one of the destructive effects of the emphasis over the past decades on "the individual"

Hi currer, I want to get some sleep but I just had to reply :) I agree with the effect you describe, but I am less sure about the cause. The Roman Empire in its final days found its legal system crumbling. So many laws, with so many complications and precedents. I think the same is happening with Western civilization. Things are so very very complex, and for very good reasons. But as we manage and perfect details, we lose the overview. In theory documents like constitutions and bills of rights etc. compensate for this by creating that central view with which to challenge unjust laws. (By the way, I don't think Australia has a Bill of Rights.) The problem is that consitutions are old, they are made for circumstances that existed centuries ago. That is a problem.

The other problem is that average individuals can't fight big money in the courts. The system is set up to prevent it, by its very nature. Class action law suits are made for this. One of the issues in the courts is that we like to think of financial penalties, but I think this can be a mistake (though not always). I wish that better legal minds than mine would spend more than a little time thinking about class action injunctions, class actions requiring non-financial compensation, and so on.

Almost every argument I just made about laws also applies to regulations, from taxes to business regulations. We are dying in complexity. We need the equivalent of Bills of Rights written for the modern world, and revamped constitutions, in order to continue. This is not something I have thought much about, I hate politics because its so irrational, but its not an unsolvable problem.

I am also not sure its about corruption, or individuals. I going to go out on a limb and agree with SilverbladeTE on something: the rights we give corporations are excessive, they are not people, they have too much power under the legal and regulatory authorities. They quite rightly use those powers, but its the people who aquiesce to that happening. There are good historical reasons as to why they were given those powers, but those reasons apply less and less in the modern world.

Bye, Alex
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
One of the basic principles of power, it seems to me, is to persuade people not to fight the status quo. Make them think its impossible. If they think that they wont try, or if they do it will be a very underwhelming effort.

On the other hand we see very much the opposite in democracy. Political leaders vie for power, fail, or are thrown out of power. Its OK to fail, the only real failure is not trying.

People with vested interests want you to think they cannot be opposed. If you agree they have won. However the people have always had the power. Dictatorships have, historically, had very short lives. Centuries at most. People try to rise up, fail, try again. At some point the dictatorship can no longer suppress them, and they go under. That is usually followed by a purge of the old guard.

Fortunately we are in a democracy. We, the people, have the power, which we grant to government. They rule at our suffrance. It is always within our power to change things - invent a whole new political party and vote it into power for example. Similarly existing political parties can reinvent themselves as new members join and change their ideas. There are always options.

In the case of ME and CFS public relations nearly all the power is in the hands of a very few organizations. That is why I think we need to change that - not only for us, but for related disabilities and perhaps an even wider group. A media centre, globally, can issue press releases on these issues. It can fill the void hiding between government, science journals and other vested interests.

There is only one way to lose this game. Don't play it.

Bye, Alex
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
In the case of ME and CFS public relations nearly all the power is in the hands of a very few organizations. That is why I think we need to change that - not only for us, but for related disabilities and perhaps an even wider group. A media centre, globally, can issue press releases on these issues. It can vill the void hiding between government, science journals and other vested interests.

I like your ideas Alex, but if only the ME patient organisations could get together (internationally) to effectively rebut these sorts of press releases, then it would make a difference. There must surely be enough resources, if they were to all get together.
 

Esther12

Senior Member
Messages
13,774
One of the basic principles of power, it seems to me, is to persuade people not to fight the status quo. Make them think its impossible. If they think that they wont try, or if they do it will be a very underwhelming effort.

Taught helplessness.

It is particularly difficult with CFs, where many of us have such limited resources anyway, and already face such prejudices. Fortunately, some of us seem to be dysfunctional enough to want to push back anyway. I'm sure there will be a diagnosis in DSM V for all of us.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I like your ideas Alex, but if only the ME patient organisations could get together (internationally) to effectively rebut these sorts of press releases, then it would make a difference. There must surely be enough resources, if they were to all get together.

Hi Bob, one of the issues we face is we cannot always get together on things we agree - but surely we are on the same page for many things we disagree with. Bye, Alex
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Taught helplessness.

It is particularly difficult with CFs, where many of us have such limited resources anyway, and already face such prejudices. Fortunately, some of us seem to be dysfunctional enough to want to push back anyway. I'm sure there will be a diagnosis in DSM V for all of us.

I am sure they could come up with psychiatric diagnoses for almost anything. :) Its not like they need objective evidence for the existence of such diseases. I am more and more thinking of large parts of psychiatry as cults.
 

currer

Senior Member
Messages
1,409
On reflection I think this latest publicity outrage against us using the media has more to do with the MRC calling for research into biomedical aspects of research, especially the revolutionary change in attitude to ask for reseach proposals on immune abnormalities.

Unsubstantiated public statements from the Science Media Centre making very large claims for bogus "therapies" rather than real research has been the rule for this illness for a long time.

Real research into biomedical abnormalities will be attacked in the same way. Once medical understanding advances, this manipulation of the press will irritate doctors as much as us.

In fact I know some doctors it already irritates. They dislike empty propaganda directed at them as much as we do.

Much rests on the success of the Rituximab research in Norway.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
"Researchers based their conclusions on the same criteria used by the NHS efficiency watchdog, the National Institute for health and Clinical Excellence (Nice)..."
Implying those guidelines are worth the paper they are written on. Of course everyone will read "NHS" and think anyone who disagrees is a conspiracy theorist for questioning things.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Keep in mind that the PACE trial data (and the Belgian clinical data audit) all show that patients are just as likely if not more likely to be on welfare after CBT than before. This is the stark reality that anyone who actually looks at the evidence will see.

Issue is that most wont look at that evidence.... its useless if no one even looks at it or is willing to read about it.