Directions for Discussion
Fighting with each other over definitions wastes our limited resources. I propose some alternative strategies, but I am open to others:
1. We debate "gold" standard ME and CFS research - what would be required to make it work? (I dislike the label "gold standard" by the way, it leads to dogma - even standards should be questioned.) Don't complain about terms, work out how to make things work given current uncertainties. We need practical solutions, plans and agendas, and not as much rhetoric. We need defined standards. Rhetoric only really reaches fellow patients ... and yes I am aware of the irony that I am writing a blog to say this.
2. We support all quality CFS and ME research, and indeed support collaboration with fibro, MS, IBS and MCS researchers. Crack any one of these and the others will benefit. A study comparing ME and MS for example could be very interesting.
3. We continue to debunk "lead" standard research using reason, statistics or any other analytical method that works. This includes the Dysfunctional Belief Model or related research, but also any CFS or ME research that is not up to a minimal standard. What are the accepted standards though? How can they be improved? Emotive arguments can be effective in political debate, but are not effective in scientific debate. We need political advocacy too, but scientifc advocacy should not be using the same strategies.
4. We collaborate to put forward our views in position papers - we need to publish. Patients are stakeholders too, we have a right, and a duty, to be heard.
5. We should still promote for the recognition of ME as a diagnostic category, in line with the International Classification of Diseases (ICD). This should include any country in which medical professionals do not routinely diagnose ME - and that is everywhere. What is the point of having international standards if they are ignored? I can almost hear some thinking "how is this different from those who argue for changing the label?" The difference is that distinctions are important but they are only addressing a small piece of the problem and are distracting us from the real issues. Addressing terminology without addressing the issues pushing damaging definitions is likely to be fruitless. The advocate community is small and most of us are very sick. We can't afford to waste our energy.
6. We shouldn't tolerate newspapers or any source calling this illness "chronic fatigue". This is a public perception issue - not particularly important to research but important to how we are treated and discussed. The reason to object to it is because of confusion - CF is a symptom and may not be a symptom at all for many ME patients, at least much of the time. We should be tolerant of new patients calling it this though - this issue is about education.
7. One thing can be done to promote ME versus CFS that will have some impact, but the impact will be subtle and nowhere as powerful as some expect. If the biomedical researchers can agree on one definition, or perhaps competing ME definitions, and produce all research using these definitions, it will change the discourse in the published material. CFS will cease to appear in biomedical research, or at least less often, and ME will appear more often.
This requires the researchers adopt this position - we can assist or encourage that but it is not up to us. At the moment this is still not happening though the trend is in that direction, even when they agree on a ME rather than CFS definition. I suspect that a number of the moves made by researchers in the last several years are aimed at this goal. The release of a physicians treatment guide will be an additional step in this direction.
The International Consensus Criteria (ICC) is the most likely definition currently available to do this, but I would not be surprised to see at least one competing definition arise. This will not get rid of the CFS label, but it will change the nature of the research debate and put more attention where it is most beneficial. It will be a de facto name change.
This is about labels versus substance. I don't particularly care if we call what I have Yahoo Disease (from Gulliver's Travels, not the internet organization). As long as the researching and research funding bodies have a good understanding, I do not care about the label. I just want objective research leading to a treatment or cure.
Discrediting the Dysfunctional Belief Model
There have been at least two book-length attempts at tackling the Dysfunctional Belief Model (DBM) for CFS so far, not counting Hooper's Magical Medicine. The first is Skewed by Martin J Walker, the second is Charcot's Bad Idea by Simon Overton. In addition to my book there are others being written - but the authors of those can speak for themselves. In the coming months I hope to review several books directly addressing issues with Freudian (mis-)diagnoses.
Tomorrow or later today I hope to post my blog Supercalifragilisticexpialidocious which is another dose of sarcasm. I am also working on a blog called Petite Principles and the Circus Maximus. That one will warrant another philosophy alert and is not due very soon.
Musical Labels Part Two
Blog entry posted by alex3619, May 11, 2012.
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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 Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.