In Vitro Infidelium
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The only 'rules' that I consider are relevant are the pragmatic limitations of what can or can not work. What concerns me about these discussions isthe lack of reference to how things work in the world as it is. I know there's a belief by some people that somehow AIDS advocacy is relevant model - but I've made plenty of arguments about why that is misguided. I've seen no convincing responses that demonstrate any effective equivalence between the advocacy opportunities and available resources of HIV sufferers and their supporters (a key issue) at any time in the past 30 years, and M.E/CFS patients currently.Playing by the rules is not something many of us have the time or strength to do.
But what is that you (we) want to 'get done' ? And why should merely going to an MP be a source of achieving an end. Very few MPs are searching for cause to take up - most will already be burdened with the competing demands of a modern society as expressed by their 70,000 plus constituents. If you want an MP to do something - you have to have a strategy to which the MP can lend support.Communicating with MP's, whilst being the advertised method of getting something done, is futile - we would not be here if chatting with our representatives would improve our collective position. I shudder to think how many patients, families etc have trodden this well worn path only to be left shaking their heads in disbelief that we are left to rot.
If you take Parliament ( I would favour Parliament rather than the Government' as the appropriate target) out of the equation - then who/what is there to address - the media ? For the media you need either a major financial issue, multiple prejudices (race/gender/religion etc) children, mass suffering - large numbers of deaths, horrible wounds, or sex, or ideally all of these put together. M.E/CFS can not deliver these in the concentration that grabs the media's attention. So if not the politicians, and not the media - then who ?In my humble opinion, engaging with Government is like trying to convince a weed in a garden to stop growing. Shouting at the weed makes no difference (unless you are Prince Charles), it is also pointless to keep on reasoning with a weed, no matter how many times you go to the weed, sit down and discuss the problem it is causing, the weed will not suddenly decide to leave your garden or wither and fade away.
Are you suggesting we say nothing .......... to any one? Do we just stay quiet and die? I cannot disappear in silence just because I may upset some individual that I believe stands in the way of me resuming my very existence. IVI, whilst I respect your patience and admire your balanced reasoning, I do not share your conclusions. Actually, I am not aware what it is you suggest to be the route we should take.
I certainly do not suggest 'we' say nothing - what I do suggest is that whatever is said, is delivered in ways that command ongoing credibility. My argument is not that we be concerned about 'not upsetting' someone, but that we be concerned that if someone(s) is upset by some aspect of M.E/CFS advocacy, that upset is clearly understood to either be of value to the 'command of ongoing credibility', or that is highly likely to be neutral to the 'command of ongoing credibility'. If I were to put it in very simplistic terms, relative to 'upset' - I'd say I was more concerned to 'make friends' than about the avoidance of making enemies - but the two frequently go hand in hand. People who are seen to make enemies tend only to be attractive to other enemy makers. And if wha we want is to for M.E/CFS to 'be taken seriously' -then M.E/CFS advocates have to be seen as 'serious' in terms approved of by the audiences we deem necessary to impress.
In terms of 'a route' - at this stage I see no value in re-inventing the wheel, or even building new wheeels, and where theyexist I'd see support for, and work within existing M.E/CFS advocacy organisations as being the only practicable route available. I understand that many people post on the forums, precisely because they find the established organisations unconducive to making progress in appropriate directions, however my view is that progress can only be achievd through co-operative action, so one way or another - 'getting organised' - means having an organisation, within which one necessarily forgoes a certain individuallity.
IVI