A Black Hole For Great Advocacy

Following the release of the Lipkin study on XMRV we have witnessed a common distortion of facts about ME/CFS in the media. On this occasion, many publications took the news about 2 viral strains and translated it to mean 'every virus'. Inevitably such misinformation provided a bedrock for some badger baiting in the press. In this blog, I want to consider the wider effect this has on ME/CFS advocacy.

Many ME/CFS advocates are sufferers themselves. Often very talented people, but limited in terms of output. When inaccurate and inflammatory articles about ME/CFS are published in the press a stream of energy and resources are at once redirected and channelled into following up such articles with comments, corresponding with the publications that carry them, corrections of comments from article readers and finally a large amount of debate on how the community should accord itself in the event of such an article being published.

This redistribution of energy for ME/CFS patient advocates runs the risk of becoming a huge black hole for other more positive pursuits in advocacy. Moreover the stress and insult felt by patients is a drain even without action. A lot of this energy might well be wasted unnecessarily. For one thing, you cannot control the actions of other advocates – so a debate on how they should act in this situation isn't going to get people very far. Similarly, you can't stop these types of inflammatory or inaccurate articles from appearing – there will always be journalists and commentators who write things which are factually untrue, we disagree with, or even find offensive.

Is the bigger problem a couple of pseudo-journalists writing inaccurate comment pieces on ME/CFS, or the lack of in-depth factual and plural reporting on ME/CFS? In my opinion it is the latter and lot of wasted energy might be better redistributed into finding new voices instead trying to combat those set in their ways, dismissive to even the most reasoned opinion. A bite of that rich Moby Dick whale steak will never provide as much sustenance as some good honest daily fishing.

In any significant piece of work, the planning stage generally only accounts for about 5-10% of the time required to get it done. The rest can be vaguely described as 'hard work and sacrifice'. In ME/CFS advocacy that 5-10% seems to become over-inflated. It's not surprising, because our energy is so precious and the risk to our own health when working hard means that we want our actions to pay off without fail. But with this abundant caution and consideration you also run the risk of falling into the black hole trap. When caution and consideration begins to comprise the lion share of our output, before long we might find our energy drained or health worsened by the very thing we designed to protect ourselves.

ME/CFS patients and advocates are like any other group in society. Human, flawed and diverse. When a journalist sets themselves against a societal group, they will always focus on and over-inflate the flaws required to sponsor the cognitive dissonance that sustains their criticism. No matter what you choose to do as an advocate you run the risk of criticism, making mistakes, or wasting your time. But it's a risk that must be accepted. You must be prepared to look like an idiot, especially since when power is challenged one of its favourite tactics to portray you as such.

Some good corrections to the factual inaccuracies in these articles is important, I certainly don't want to denigrate some very fine work in that regard. But the resources spent on doing so and the cognisance after the fact could withstand a sizeable cut. I'm neither a significantly professional nor skilled ME patient myself, but if I had one wish it would be that there was some old fashioned hard work I could help out with whenever I get that little bit of energy spare and when one of these articles appears in the press, I have a finer goal which I can channel my anger toward.

Perhaps someone might help me with that?

Yours Nominatively Determinate,



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