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I've read the entire Kafka Pandemic blog and I really recommend anybody with these conditions to read the whole blog. I'll put a link to it. And I think once you deprogram yourself, the next thing to do is to educate people ... -- Youtube video



POLL: This question relates to our strategy.

RIGHT NOW, will the health authorities and industries change more if we COMPROMISE (accept, appease, cooperate, go along with, explain, give them what they want, seek common ground, etc.) or OPPOSE (fight back, resist, seek allies, show our strength, organize, etc.)?
Choose the closest answer.

(Also, how many times did you leave the house in the last 365 days (for any reason)?
)

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[Update: the poll got reset to zero recently, presumably due to a bug, don't know if it is updating. It might come back with your vote intact.]

What strategy will make the authorities change?

Sunday, September 23, 2012

Politics and rage

Politics is the manipulation of how things work in society, for the sake of private gain, by the powerful, at the expense of the weak, often using the feelings of the masses as a tool.

You discover for certain, demonstrated beyond all objection, that the world does not care whether you live or die.

Action

Without action, we suffer, we lose our status as human beings, and large numbers of people die early.

Millions who assume they will never get sicker, will. Long before any fundamental change not demanded by us will happen.

Educating people

There is a lot to do. For example, people need to be informed, exactly as they are with HIV/AIDS. Polite letters can take us a long way.

Every one of the following needs to know Three things or similar:

  • Every member of the US Congress without exception
  • their UK and other counterparts around the world
  • every newspaper publisher
  • every human rights NGO
  • every college student
  • every head of state
  • every born activist
  • every medical NGO
  • every sufferer
  • every doctor
  • every carer
  • and every biomedical scientist in the world.

Importantly, they need to know that everybody else knows it. These are people we need on our side.


Getting Congress on the case of the research agencies is a top priority.

No denialist press release or rule or pseudoscientific paper should ever go unchallenged. The world should expect us to provide accurate point-by-point refutation every single time.

These are just examples.


But there's a missing element.

Advocacy

There is excellent advocacy behind the scenes — bedridden and housebound people writing letters and much more despite the fact that it makes them a lot sicker — but IMO while it is 100% necessary, we need more to keep politics from slitting our throats.

Nothing here should be taken as dismissive of the awe-inspiring positive current and past efforts. They are extraordinary and necessary and always valuable down to the tiniest thing anybody does.

We are in danger

Things getting even worse is far beyond the beyond of wrong. People are being taken away from their parents. People are being incarcerated. You are regarded as subhuman.

You are a scapegoat.

There is no sense of urgency, so this will happen more. Maybe much more.

Extremes

Misopathy reaches extremes and it does not matter where. Ask not for whom that bell tolls. One instance anywhere tolerated is one step toward you personally and every other sufferer.

Things that are not a matter for debate are being debated and lost. The basic worth of humans, the basic value of truth, the basic facts of natural reality. All at the cost of health, lives, and everything that has ever mattered.


How many more must die before humans become ashamed, as humans, of the fact that it is, in fact, happening here, on our watch?

Funding

On funding, we're often worried about mere thousands of dollars. We need to aim higher by orders of magnitude.

Why a $200,000 or so grant? $200 million — a thousand times that — is nothing. Good scientists need support.

You'd think nobody is sick at all, instead of millions and a large chunk of those bedridden and housebound. $200,000 is not even a rounding error.

It pays for 23 seconds of US-Iraq war. Did you know that one year of US-only domestic-only HIV scientific research is estimated at $2,840,000,000?

That is hard science research and it is for the retrovirus itself.


To get a rough idea of scale, the ratio is the same as the ratio between one day and 39 years.

Inequity

I emailed a researcher who studied funding levels compared to disease burden. They were looking for the largest inequities.

I asked why The Pandemic was not included.

He replied, "Funding was too little to include in our analysis."


Funders are not feeling any pressure at all. They have no reason to change.

They are smiling and laughing. They are snugly nested in their networks of back scratching.


But we can do something about it.

What do we need?

Back to the missing element. I think this is what we need for the current status:

We need manpower.

There will never be a waiting period; there are a thousand things to do.

How do we need it?

We need it with grim cold focused rage. Sustained, relentless, strategic rage. The kind of rage where you stop trying to lead a pretend life and instead do something wise and globally beneficial to create a real life.


I believe that with accurately informed manpower, and using ethical means, rapid tangible change is within our grasp.

Exponential processes do this:

  1. nothing,
  2. nothing,
  3. nothing,
  4. "what just happened?!"

AIDS did it.

The movement

Those who think it isn't urgent are just wrong. Those who think they are invulnerable to disease progression are just wrong. Learn with us. You will be part of the cause of our time.

Our struggle will be known and it will be supported by millions and it will be honored. Human rights organizations will scramble.

This is not some random disease making some local victory. There is a bigger picture. There is a better world.


We will get TED talks. We will even get a stupid stamp.

Opportunity

Speaking of TED talks:

Tal Golesworthy is a boiler engineer — he knows piping and plumbing. When he needed surgery to repair a life-threatening problem with his aorta, he mixed his engineering skills with his doctors' medical knowledge to design a better repair job. — TED

He got past the politics. In the UK! That's like biomedical Mordor, isn't it? For us it is.

The point is that mind-blowing possibilities fan out from every step we do not take. Opportunity costs are invisible.


With manpower, we can do things in parallel and skip no opportunities — even ones we do not anticipate.

The Japanese have a saying: if you don't do it, nothing will change.


Now for a concrete way to raise manpower from the politically dead.

Positive change

Here is a possible direction:

Carefully inform and warmly welcome massive numbers into the existing serious advocacy movement.

Instill the value of action.

Be accurate and reliable and not shy.

Tell them what they must know to do good and not harm. That is the caveat — and it is critical. One thing especially.

Severity

Teach Severity. Don't let anybody ignore it. This is not optional. It is the only way out.

Point out Samuel's Law (which is described in More you than you and a few other articles).

I do not want anybody advocating who does not understand severity (including the multisystem nature). No exceptions.


My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. — Emily Collingridge

Emily died from the disease.

What is a real movement?

Fight on behalf of people who are sicker than you are. Always remember their existence. Are you severe? Fight for very severe. Are you mild? Fight for all who are sicker.

I believe that without that, it is not a movement at all. Only a mockery.

Without a real movement, there will be no progress.

Mild sufferers and healthy supporters

Please read Characterization and More you than you for why I believe accurately informed mild sufferers are important to the movement and vice-versa. That also goes for healthy supporters.

What worries me most is that millions of sufferers do not know how sick they can get. A large number of the most informed advocates ROUTINELY forgets the existence of severe and very severe.

A large number of severe and very severe sufferers used to be mild.


Therefore, by "accurately informed", I do NOT mean knowing the facts of severity, but profoundly knowing them in their bones.


It is imperative for the success of our movement.

Practical strength

Once we pass that hurdle, increasing our practical strength — letters written, things done — a thousandfold is not out of the question.

There was a time when a person couldn't walk across campus without being told that silence=death. You are needed. You are being called.

The day that ten million mild sufferers and healthy supporters take to their hearts that it is fundamentally a radically multisystem severe disease, and take to the streets with grim cold focused rage, is the day that we stop losing and start winning.

Is it risky?

All proposals carry risk if you include opportunity cost. The question is whether the circumstances merit taking it. I believe they do.

I also believe we are in a position to take back the things that were robbed from us: science, health, justice, respect, enfranchisement, ability to contribute to the world, and lives.

Is it naive?

The strategy does not rely on hope as I believe we have to bring into existence the only thing that makes hope meaningful: commensurate scientific research on root causes.

It does not rely on trust as I believe our trust has to be earned.

It relies on action and I do NOT believe that action is naive (only misdirected action is).

Should we have a policy target?

Should we focus attention on a policy target at the same time? I think so and I will post a certain idea if there is enough interest. I've yammered on enough in this article as it is.

The value of the specific proposal

Now some disclaimers before I come back at you with force.

The manpower proposal might be a good idea; it might be bad. If it's bad, it should be rejected. The larger point is about politics and rage.

I am open to counterproposals if they are forward-looking and implementable things we can do instead. Brake-pad-like quibbles and wolf-pack-like factions leave me cold.


I am of course not saying it's original (this isn't an art exhibition). And nobody has to listen to a word I say. Who am I to suggest this strategy?

It is implementable

But it is implementable.

Unlike Stockholmer and pseudoskeptic slush — "I have a quibble so let's not do anything" —1 or the vague hope and quiet despair of tamped-down rage, it delivers leverage and a meaningful possibility for positive change.

Let our rage fly

Whether or not the specific proposal is right:

I am saying let our rage fly a thousand times higher. Put all of it to use for everybody. Direct it strategically and ethically, but let it fly.

Samuel

Footnotes:

1 "I have a quibble" is a speech by Marvin Lunar Kong, delivered after his march on Seattle, Washington, which for some obscure reason history did not record.

16 comments:

kathryn said...

Love it! Samuel, I a ready...I am old, but I am ready to hit the streets even if it kills me. Three of us are sick with M.E. and one is severe with the other two moderately severe. Only I am able to rise to an occasion.

Name it! Guide us. Your words are so wise, and this one especially is timely with CFSAC only a week away. I do wish it had been earlier so our presentations could have been prepared; alas, the time for submission has passed.

There are researchers claiming they have us constantly in mind, but no results, no appropriate funding, and lip service cheap.

What can I DO!?

Samuel Wales said...

"What can I DO!?"

kathryn, you have no idea how much I needed to hear that.

Thank you, thank you, thank you.

I desperately needed to know that there are people who care enough about fighting for our lives to DO something.

I feel A LOT better after reading your comment.

Some possible ideas later. In the meantime, a haphazard overview is under "Contribute to the movement". Can anybody add to it?

Anybody is very welcome to read anything I've written on this blog at the meeting, if it helps.

leela said...

Once again, Samuel speaks with laser-like precision, piercing wisdom, and heartfelt poignancy.

Yes. What *can* we do? What *are* we doing? The time is particularly ripe for action. Never before has the spotlight been so intelligently on ME. Never before have there been so many agents of serious research. So, the pressure must be applied.

The deniers have less footing. The truth is coming into focus. Let us transform the rage into beneficial action, rather than stewing in the sour juices of what has come before.

The time is now. We are millions strong.

Samuel Wales said...

Thank you, leela. :)

Yes, we ARE millions strong.

===

To me, one thing is certain: being docile will absolutely fail. The world changes when it is motivated, not when scientific facts are gingerly presented for the 1000th time to those who never wanted to hear them.

Andrew said...

Amen.

GinaB said...

Samuel I agree and will give my full support. Presently I am very weak but I am in. I am an example of how this disease gets worse. 6/16/93 was bad, now it has taken 1/2 colon, inflammation in back, joints and muscles ache so bad. I live on pain medication and want my life back. I heard how Francis Collins got involved with the disease where babies age to old people in years and the science has been incredible! He cared and science won. I think it was 9/28/12 on NPR how he gave the NIH one year to find the gene or etiology. The doctors child disease is serious. So is OURS!
Gina

GinaB said...

Samuel I agree and will give my full support. Presently I am very weak but I am in. I am an example of how this disease gets worse. 6/16/93 was bad, now it has taken 1/2 colon, inflammation in back, joints and muscles ache so bad. I live on pain medication and want my life back. I heard how Francis Collins got involved with the disease where babies age to old people in years and the science has been incredible! He cared and science won. I think it was 9/28/12 on NPR how he gave the NIH one year to find the gene or etiology. The doctors child disease is serious. So is OURS!
Gina

cfsboston said...

Quote from my recent federal testimony at the CFSAC (Washington, DC):

"If people believe HIV causes AIDS, and that CFIDS could be caused by a retrovirus, why couldn't CFIDS be caused by an undiagnosed strain of HIV?

I would like to suggest that CFIDS/AIDS be researched together as one illness."

Full 5min here:

http://www.youtube.com/watch?v=ubjGm5dILpY&list=PL600CB038194B4593&index=11&feature=plpp_video/

Anonymous said...

Great article!

Samuel Wales said...

Hi Andrew, thank you. If you're the same Andrew, I heard your testimony was excellent.

Hi GinaB, I had not heard about that. If they wanted to, there is no question that the agencies could do a 180-degree turn overnight. It is our job to make them want to.

===

Please add ideas. What can we do to increase manpower? What other implementable forward-looking thing can we do now to gain momentum?

Recruitment can be done without organization; it's a "just do it" kind of thing. On top of that, comparing notes, implementing commitment strategies, and encouraging one another can be useful.

Unknown said...

Just catching up with all your blog entries, Samuel. And I absolutely agree. When has this rage and risk not been necessary. You are right on, man.
By the way, hope you are having a decent day.

Unknown said...

Hope I am not posting this twice. Brain is glummed up.

Samuel, just catching up on your posts. News of your blog is spreading like cyber-wildfire.

You are right on, as I see it.

Wonderful words. Thank you. I am in as I can be! Will be following avidly.

Unknown said...

Just catching up with all your blog entries, Samuel. And I absolutely agree. When has this rage and risk not been necessary. You are right on, man.
By the way, hope you are having a decent day.

ampligenic said...

I could be wrong of course but your paragraph on funding I think tells us exactly why we're NOT getting millions of research dollars. You wrote that the US spends $2,840,000,000 a year on research on HIV. But there's no "equivalent" virus that we can yet blame for CFIDS. We can't fight a concerted battle when we can't even agree on who the enemy is.

This is why I feel the Lipkin pathogen study is so crucial. And unlike AIDS sufferers, we NEED a study like that (or bigger than that) because the cause of our illness is so much less obvious. It's not something that the Pastuer Institute could just isolate from PWC tissue samples, as they did within the space of a year with HIV from AIDS patients tissue samples. The Lipkin study is the research to start all research because as long as we don't know our enemy we will never get research dollars.

Samuel Wales said...

Hi ampligenic,

I believe that all plausible root causes need to be investigated at the highest priority and urgency, in parallel via a very large number of well-funded rigorous studies, using Samuel's Law as the cutoff.

This means: if a hypothesis can fit the facts, including but not limited to the outbreaks and the multisystem facts of hospitalized, bedridden, and housebound sufferers, then research it. The entire range of severity is necessary to include in studies.

I reject all of the Catch-22s. Scratch the surface, and you always find that they are imposed on the disease by people with agendas. They are perceptual distortions.

Samuel Wales said...

Hi Unknown,

Thank you.