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The Winds of Change

Blog entry posted by alex3619, May 12, 2014.

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:
http://www.prohealth.com/library/showarticle.cfm?libid=18930
http://www.cortjohnson.org/blog/2014/05/11/fifty-million-dollar-chronic-fatigue-syndrome/

Keywords: politics, medicine, myalgic encephalomyelitis, chronic fatigue syndrome, Canadian Consensus Criteria, advocacy, research, diagnostic, criteria, goals, failure, social media, Black Swan
Izola, L'engle, Helen and 8 others 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. Leopardtail
    My mind has been in a similar place for a while now. Though I think we need to forget the policy makers, forget the medics and go after the public. We need to make them angry and implacable about the social and economic waste of it all, furious about the self interested corruption and empathic about our plights (thus research donations).

    We need the CDC, MRC, NICE, Wikipedia, national governments deluged with a tidal wave of complaints.

    In short we need a hip-hop singer to raise our profile.
  2. alex3619
    "stuffed up", got it wrong, but in a bad way, not just a simple error:

    http://www.urbandictionary.com/define.php?term=stuffed%20up

    This comment wont use the link, but if you cut and paste it into your browser it will work.

    "Means: a bad mistake, or something that has been done very badly"
  3. Starfive
    What does "stuffed up" mean? I can pretty much guess through context yet would like to know. Thanks Alex, great blog!
  4. alex3619
    I will be addressing these issues in later blogs @taniaaust1 . "Calling doctors to account" often illicits ideas of legal action, but that is a mistake unless there are very clear legal grounds. There are better ways. I think we need to be exploring them. Once you have the evidence together then public name and shame is one option. This has to be from a large advocacy group in many countries. They can take legal action against one person, but they cannot stop them all. I stress though that we need evidence.

    However my main point is to bring the medical profession to account, not individuals. They have a test for us, NOW. They are not using it. Its an obvious test. Its been around for at least 65 years. That is the action point.

    One of my earlier blogs on conspiracies was made into a PR article.

    I took an earlier case of mine to the discrimination commission back in about 1994 or 1995. It was dismissed, in large part I think because it was a quasi-government organization that discriminated against me on the basis of my having CFS. I was not alone either, many other patients made a similar complaint.
  5. taniaaust1
    I wish your post had been an PR article as it's very well written (maybe they could consider that so everyone can see and read it?).

    "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. "

    That point is a very hard one to do anything about which Ive been finding out myself with taking the state disability service to the equal opportunity commissioner, thou if all goes right things here will be working out for me (and should help change the fieldscape for others with ME/CFS too).

    The issue is that to prove someone did ME/CFS discrimination, one has to also prove that this act impacted upon oneself but one also has to prove the other acted unreasonably under the "current situation/circumstances". Unfortunately there is a lot of bad science behind these people to help support their actions or they can claim that it is unreasonable for them to have been expected to understand such a complex disorder when they arent specialists in it so can get away with their naiveity in this illness and justify their bad treatment of you.

    Even thou things are like this.. we do need to start trying to drag these people and these discriminating services to the court or boards such as equal opportunity commission who will then be reporting back to gov on what is going on with all this.
  6. alex3619
    Unfortunately many of our tests are not unambiguous about the results. NK cell dysfunction? Yes its a problem, but now prove its important. We need more research on many things.

    The 2 day CPET is different. It is NOT ambiguous, equivocal, or capable of being misunderstood by anyone unless they are ignorant of the science. It demonstrates clear objective disabling pathophysiology that is using technology that is more than a half-century old ... and very well understood.

    A cytokine shift, or non-lytic pathogens, or something else may be proven to be the cause in time, but right now we have established pathophysiology, that can only be denied from a position of ignorance.

    I still like the enteroviral theory myself, but I also like the idea of an immune shift to a new pathologically stable state after any severe infection that infects gut and B cells. Proving any of that is still going to take years.
    L'engle, NK17 and rosie26 like this.
  7. NK17
    Dear @ alex3619 I second and stand with you and all that you've have brilliantly stated in your blog entry above.
    May we "live" and be strong enough to see the recognition of ME and with it the battery of tests that prove and measure the physiological abnormalities that PWME, all over the world, have and are living with day in day out.
    Let's keep fighting, let's bring other Llewellyn Kings to our shore.
    NK17 aka Karl Popper ;)
    justy, rosie26 and alex3619 like this.