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of Ampligen for the treatment of ME and CFS show that any model that does not take the immune factors into account is obsolete.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.
The Derision and Tsunami Principles
Blog entry posted by alex3619, Sep 8, 2012.
About the Author
I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I become political around 2009. My current project is a book called "Embracing the Null Hypothesis". The hypothesis that is unsubstantiated is the idea that CFS is due to dysfunctional beliefs.