What do we do to change political and medical policy on ME?
The people who need to be convinced are the experts, the authorities, the policy-makers. They have prestige, power, reputations. They stuffed up, badly. Its human nature to be blind to your own failings.
We have had a test for ME, or at least severe disabling pathophysiology in ME, with the two day CPET, or Cardio Pulmonary Exercise Testing. Its been around for at least 65 years, though it might be even older than that. It was only 7 years ago that we started to realize the importance of this test.
This disease violates common conceptions people have about disease. That includes even doctor's misconceptions. ME is different, in that it involves a delayed provoked response to activity. This response is measurable by CPET, which is a test that probably all doctors were taught at medical school. I am currently exploring the notion that this is a Black Swan effect.
Anyone who insists ME and CFS are the same disease, and not merely overlapping patient cohorts derived from different definitions, is asserting that you can have CFS without CF. They are saying that a disease definition based on chronic fatigue does not require chronic fatigue as a symptom. It is of course a nonsense, something that Byron Hyde pointed out in the late 90s.
There is going to be huge resistance to change. At first it will be like trying to divert an iceberg by blowing on it. A little huff, a little puff, but it wont be blown down. Then it will be like, finally, we have a tugboat pulling the iceberg on a new course via cable. Then the iceberg will melt. Then people will ask why we didn't see the obvious. Then history will be rewritten, as it often is. Though this time it might be different, as historians will have the internet. Those responsible cannot hide forever. Their historical legacy will be as quacks and charlatans.
We need to support our researchers. I do not include psychogenic medicine in this, but do not exclude other psychiatric and psychological researchers. By support I mean by participating, by promoting, by funding and by advocating for research priority, including funding priority. However I also mean politically, including funding a political lobbyist. I think Llewelyn King got that right.
In an ideal world a million patients should have signed the letter supporting our experts who called for the CCC as an interim diagnostic criteria. Sadly there are a host of reasons that prevent advocacy from being ideal.
We need to challenge false and dangerous abuse of authority, whether by bureaucrats or doctors, in these matters.
We need to promote the latest and best science in the media, on social platforms, and to government. This includes countering poorly researched pieces from organizations like the Science Media Center.
We need to be better organized. That should be around specific goals, not broad agendas. This is starting to happen. More and more ideas like class action lawsuits are being discussed.
There are huge differences in some of our goals, but some basic things I think are universally agreed on, and those should be our priorities: more and better research; a moratorium on government funding on psychogenic medical studies; better medical support for patients, and training for doctors; better social support for the most financially, cognitively and physically challenged patients, and an end to medical abuse of the very sick.
Above all, I think we need to shock the world to change, by
1. Deliberately, systematically and carefully making everyone aware of how much they "authorities" and "experts" have stuffed up. They have not only failed, they are continuing to fail.
2. Disseminating the consequences of this systematic failure ... this largely means to the public, and includes videos and documentaries, but also books and as we saw lately, even song.
3. Calling the medical profession to account. Its not a doctor, or a few doctors who have stuffed up, its nearly all of them. While it is easy to argue that a typical individual medical doctor cannot take much responsibility for this, there is abundant evidence that doctors are responsible collectively, because they had the information and did nothing with it.
To change a thing it first has to be seen that something needs to be changed.
Some may say that I am being too challenging in my views, that I will foster a position that I am an extremist, or that I will create antagonism inside the medical profession. I do not doubt that what I am saying will be viewed antagonistically, but I do not think we can get anywhere with a policy of small incremental change. Societal power structures are resistant to change. They simply ignore or absorb minor efforts.
When change comes it is relatively rapid, and is more about shattering the dogmatic position about things and moving to new dogma. Something has to happen to shatter the entrenched, counter-factual, dogmatic, irrational, hypothetical and dangerous views that are often held about ME. That is not going to happen with a softly-softly approach, but it wont happen with excessive aggression either ... and in particular violence will not produce the desired result.
It might happen with further good research. What I am saying though is that we already have enough good research to make it happen if we push what is already known and not let it be dismissed.
PS. This started as a post here: http://forums.phoenixrising.me/inde...er-neurological-conditions.30149/#post-461112
I am too unwell to write the kinds of blogs I want to, but I can do opinion pieces. I had nothing planned for May 12, then I wrote this post. So I thought, why not make it a blog? My writing and investigation is on super slow, but its not stopped.
For anyone wishing to read more good blogs or articles coming out for today, I recommend:
Keywords: politics, medicine, myalgic encephalomyelitis, chronic fatigue syndrome, Canadian Consensus Criteria, advocacy, research, diagnostic, criteria, goals, failure, social media, Black Swan
The Winds of Change
Blog entry posted by alex3619, May 12, 2014.
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.