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The Derision and Tsunami Principles

Blog entry posted by alex3619, Sep 8, 2012.

There have been very few options we have had as advocates for ME and CFS that have worked. We lack numbers, and we are often too sick to be effective. This is something that occurred to me as I was trying to go to sleep - and now I am up to write about it.

This is a detour from my planned path. My Greenwashing blog is almost done. I will also be writing about another option we have to be more effective advocates in about four or five blogs from now.

A question was raised in the thread on the pending review of NICE guidelines for the treatment of CFS and ME. I had put forward the notion that the Rituximab data and the potential approval of Ampligen for the treatment of ME and CFS show that any model that does not take the immune factors into account is obsolete. The counter-argument that was raised is that this will not be accepted - there is no way this will be taken into account.


NICE or NASTY? Reframing Scope.

First let me say that I agree that the NICE review will most likely not include such considerations in formulating their policy. As I discuss in Greenwashing, step one of denial is Limit the Scope of Enquiry. This is a well established policy tool almost everywhere. The frame of reference limits the outcome. This is their framework. It is not ours.

If we accede to this, then we are allowing them to dictate the outcome. It should never be acceptable.

What can we do? The scope of the review will necessarily limit the outcome. The results from phase 3 clinical trials of Rituximab are years away. Ampligen will be a new drug if its approved. However, Ampligen has decades of scientific data supporting it. Very few drugs in history had this much data prior to acceptance (though it remains possible the FDA will reject it). In addition immune abnormalities like depleted bright cell numbers are important. (Bright cells are a type of Natural Killer cell.) Anti-viral therapies also get results that are an order of magnitude better than CBT/GET. Ignoring this data in its entirety is a perversion of the scientific process. Its been done before, but the data was never this good. Such railroading of results is a political process, and has no place in a scientific review.

I have two potential solutions so far. This is one of them.


Derision as a Tool

If we have one or maybe two focussed messages there is a way to get it out there with limited advocacy numbers. We need to pick such messages carefully. We need one or two messages per year, maximum. They need to be specific and highly focussed - vague statements like we need more biomedical research are not enough.

My suggestion, which needs debate, is the message for NICE is: "Its rediculous that an evidence based review of ME and CFS treatments doesn't take the biomedical evidence into account, particularly the immune data." It needs polishing, rewriting and so on, but thats the message.

"So what?" is the most likely response. The guidelines have to be limited in scope, they can't consider everything, and they are only interested in well established treatments!

Ampligen and anti-virals are far more effective than CBT/GET. The outcome is much more impressive for a much larger percentage of patients. Rituximab adds in complete remission as a bonus for some patients. None of these are perfect, but they are far better than what NICE has been promoting.

So how do we get this message and maybe one other out there? How do we make it effective? How do we make it so scornful it has an impact?


The Tusnami Principle

My proposed solution is to create a tidal wave of brief commentaries. If a thousand advocates, in a thousand posts, on various topics including replying to newspaper articles, or official government statements, or general blogs etc., include and repeat this message, Google and other search engines will do this for us. Its a way of creating a viral meme. The message has to be pointed, it has to be brief, and it has to drip with scorn. We also cannot over-use this. Very few messages can be sent, and they have to be sent over a year or several. If everyone else in the ME and CFS communities pick up on this and replicate it, then the size of the message wave will be further increased. This is not about spamming the message, its about including it with every other message we send.

We need to make it very clear. In no way is the ignoring of scientific evidence to be accepted by us for any official enquiry. Not now, not ever. Repeat this message ad infinitum until it gets through. We could probably call that the Bulldog Principle. ;)

I cannot do this alone. The message needs to be worked on, and small variations will probably help rather than harm, so there is room for personal touches.

I am throwing this open for debate. What do advocates and the patient community think? Is this workable? Are there any downsides? Will we get sick of seeing this on our own websites - thats another reason to keep it brief. This isn't mass spamming a single site. This is simply using a political tool that shows up in elections: take a point, make it emotional, ram it home without exception. The perversion of medical science by political manipulation opens the potential solutions up to include political ones.

Some will be concerned that this will be too negative a message, that it will create resistance. I think we are decades beyond the point where we should be worried about this, but that is just my opinion. The system is already biased - playing softly softly will not achieve anything but to allow politics to continue to direct the outcomes of enquiries and reviews.

Over to you.
Izola, heapsreal, allyb and 1 other person like this.
alex3619

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.
  1. Izola
    I'm done with being nice to our captors, our torturers, our life murderers. Being nice doesn't seem to work much. I'm too sick to be effective and no longer able to know where to draw an effective line. I do know how to cross it. They depend on our politeness. Don't be it. As JustinReilly subtly suggests, we need to borrow the Aids banner to hang on the CDC. Thank you, Alex and those carrying his candle. And Thank you silverblade TE, I now know how to spell "Gobsyhte." And I am glad you are going after the " GOBSYHTE BASTARDS!"
  2. currer
    I think it could work, alex, and i am all for using the internet to undemine the stranglehold government keeps over issues that conflict with its policies. I would be prepared to help.
    Izola and alex3619 like this.
  3. SilverbladeTE
    The NICE Guidelines for the treatment of ME were not set up by biological, caring experts, in fact, they were set up to hide any investigation and help for the milliions abused and left to die by a system set up to protect the profits and arses of the insurance companies, government and their quack doctors who betrayed the interests of their patients.
    Who let 17 million innocent people suffer a slow agonizing horrible disease, so they could save insurance companies money, but cost the world vastly more by refusing to heal the sick as short term profit over ruled common sense or mercy.
    It costs billions to treat and deal with those ruined by this disease and abusive medical systems, it would be much cheaper to cure them, but that would expose the fact that they were indeed physically sick, not mental, and had been treated with gross negligence and expose our systems for the corrupt horrors they are.

    WE ARE NOT CUSTOMERS, WE ARE PATIENTS!
    WE WILL NOT BE FILED, STAMPED, INDEXED, BRIEFED, DEBRIEFED, OR NUMBERED
    NOR WILL BE TORTURED, LOCKED UP, DRUGGED, OUR CHILDREN STOLEN BY THE ABUSE OF THE LEGAL SYSTEM, NOR WILL WE BE EXTERMINATED!

    NICE
    NASTY, INCOMPETANT, CORRUPT, EVIL
    AND UTTER BULLSHIT!

    FROM THE PATIENTS TO THE GOVERNMENT
    GET YOUR F*CKING ACT IN GEAR 'CAUSE WE'VE HAD ENOUGH OF YOU LYING, LAZY, HYPOCRITICAL, USELESS, SELL-OUT GOBSYHTE BASTARDS!


    That do? ;)
    Izola likes this.
  4. Enid
    Good thinking alex. We all know here NICE are supposed to be apolitical (a panel of specialist Docs in various disciplines) but forced to choose by limited resources (gov) effectiveness of treatments/drugs. The BBC have let us into the making of their difficult decisions. Also as we are constantly told it is "guidelines" only. We know it is not - it is followed to the letter by UK medics frightened to step outside - supposed to know. Your point about not taking immune factors into account for ME and in the light of compelling research findings is strong of course. So blind with science - rather open eyes to science in principle I much agree with. Can we do it. Not too sure about ridicule here - we've been doing that for years with psych mumbo jumbo one way or another. It's real science for real Docs we must get through to. Clearly, concisely, one pointed. We must educate.
  5. alex3619
    Hi user9876, PR will be the subject of my other strategy. This one is not about information, its about changing this story. Information is something else, and has other strategies. My solution to that, which has been discussed on a few threads recently, is about establishing a global press release website for neuroimmune diseases. I will be looking at this in some detail four or five blogs from now.

    Its also not just about Google. Its about anyone researching this or related topics tripping over this message everywhere they go.
  6. user9876
    You don't need to swamp the internet with stories to get good results with google. There are techniques of search engine optimisation. I
  7. user9876
    You say there is no place for politics in a scientific review but politics is inevitable. The proponants of CBT and GET are very good at the politics and I think it is up to us to get better.

    I think there needs to be a long term campaign but there are also some important short term goals. I think the NICE review may be one of these.

    Hence I think we need to be politically astute in things like the NICE review. As patients we are the least powerful group so it is hard to go in with a tough negotiating stance. Instead I think we need to go in with good evidence but also provide simple ways out for those with disfunctional views. Derision comes when those who talk most about evidence based medician ignore evidence that doesn't support their case. Hence the need to present some clear gems of evidence to move the argument on. If we present 500 papers they may well get ignored but to present 5 or so with will argued connections and support from the other 495. Perversely a few pieces of good easy to understand evidence are much more persuasive than a huge pile of papers. In research good science often looses out to those who can tell a good story.

    In a more general campaign you talk about two things. I think the second is important. I remember one politician talking about setting the right context (I think it was peter mandelson). So in elections they always tried to have the earliest press conferences as this determines the stories that the papers run. In the case of ME the stories seem to be about CBT and GET since they have a good PR agency. And we respond negatively saying how they don't work. But the thing to do would be to get the biomedical information into peoples minds. Without good press relations I'm not sure how this happens. I've only seen one journalist who seems sympathetic.
  8. alex3619
    Hi madietodd, I cannot take all the credit. Its a very powerful strategy that is already in wide use. The biopsychosocial movement use it all the time. Its effective. They have impact because they are in positions of authority. We might be isolated, but we have numbers - small numbers, but many more than they have. Its part of why I say the dysfunctional belief model is being promoted by political rhetoric, not science.
  9. madietodd
    I think this is a very powerful idea. To take a single message, and through lots of people posting it all over the place, change the story.

    I think scorn is an important part of this process, but not in all venues. Bloggers and reporters might react better to - Hey, here's the information about the immune angle that you left out. To me, results would come from the consistent insertion of biomedical and immune dysfunction information into the conversation.

    For those of us unable to keep medical information straight in our messy brains, it would be great to have a regularly updated resource of links and predigested sound bytes to use.

    Swamp 'em and let Google do the rest. I like this strategy.