20
Jun
10

You see the trouble with ME…

Having an opinion in the ‘world’ of ME is not a good thing;
people simply do not like confrontation. I’ve known this for over a decade so why
am I talking about this now? Here’s why:

You’ll notice that I used the word “confrontation”.
I used it because I know that there are people out there that consider posts like mine
to be confrontational. Indeed many of these people would see the likes of me
as confrontational.

You will also notice that, as of the evening of Sunday 20th June 2010, that the post
has still not been replied to.

There might be perfectly good reasons for the lack of a reply of course but arguably
(as it were) there is nothing particularly controversial about my question. I asked
the question because I genuinely want to know what the “deeply reputation-damaging”
material is. It’s not an exercise in being awkward. It is merely a request to clarify
a statement. Maybe I’m thick? Probably am.

I’m in no way singling out Tony Britton. I’ve not really talked to Tony Britton
terribly much but based on the few times that I have communicated with him,
I’ve not had a problem with him. If anything, I’ve probably had more communication
with him than most in the ME charity hierarchies although that is not really saying much.
What I am trying to single out is a culture of conservatism (small “c”) and silence which
has been prevalent in the world of ME for many a year.

I’ve often used the cliché of “you cannot make an omelette without breaking eggs” when
talking about ME politics. You can add to that “nothing ventured, nothing gained”.

Those two clichés mean roughly the same I guess; if you want to achieve something,
you have to occasionally take risks. For what it’s worth, I do not believe and have never
believed that risk avoidance in the world of ME politics is a good thing. Ironically
many of the patients that are members of the ME charities seem not to want to
‘shake things up’ very much, seeing the likes of me as troublemakers who indulge
in counterproductive measures.

I also believe that there is not a little snobbery in the view of these people.
It could also be seen as patronising.

The equation seems perfectly simple to me.
People have been diagnosed with something for which there is very little proper
research and very little effective treatment. Meanwhile these people are getting older
and the financial noose is getting tighter as regards welfare reform. ME was classified
as a neurological disorder over forty years ago but treatment is almost no better
since then.

The current tactics have not worked.

A recent Guardian article referred to ME patients as having been “radicalised”.
The phraseology almost implies muslim extremism and whereas I’m not at all keen
on that and all that that entails, there certainly is growing frustration on the part of
a few people diagnosed with ME.

People diagnosed with ME are being held back as much by their fellow sinking
shippers as they are by their inept and arrogant would-be lifesavers.

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