Vive la difference….please.

Now I had a post the other day which mentioned the 12th of May as “INTERNATIONAL
AWARENESS DAY…..FOR INVISIBLE ILLNESSES”. Not to put too fine a point on it, the
name filled me with horror. One of the main criticisms of “Chronic Fatigue Syndrome”
is the “dustbin diagnosis” nature of its name and contents. CFS is, in effect, a dumping
ground for anything that the medical profession cannot deal with or which would
slightly inconvenience them.

To the outside world – not everyone has been diagnosed with CFS or ME or whatever
somebody wants to call it today – “awareness days” are seen as a bit of a joke.
This may not be obvious to us in the ME world but ‘out there’, it is a reality.
To tag onto it the term “invisible illnesses” is almost suicidal.

Campaigning should have at least one eye on the public for it is them, apart from
those few who wield power, that campaigners try to win over.

However there is another point to this.

The internet list “co-cure”, a message board seemingly devised for the posting of
notices regarding ME/CFS, is now a list for ME, CFS and fibromyalgia. I have not
posted there in some time. The muddying of the waters that co-cure, “international
awareness day….for invisible illnesses” and other homogenising ventures are undertaking
are burying, ironically enough, the awareness of ME.

I have nothing against those diagnosed with fibromyalgia for they deserve medical
treatment as well and I have no personal gripe against those behind the awareness
day for invisible illnesses but I do have a big problem with the idea for homogenisation.
it makes an already cloudy water utterly muddy.

There is a final point though….

I find it interesting that I have noticed very little resistance and, in many ways,
an opening of arms by some in the ME ‘community’ to this homogenisation.
One of the reasons why I’ve increased the amount of posts on this blog is because
I now have the ability to say what I damn well like. I have spent years being suspended
and expelled from various ME lists invariably by very weak people. I don’t mean physically
weak (although they may be, of course) but by mentally weak people. In fact one of the
list owners who banned me later admitted that he was “scared” of me.

As I hinted at earlier, sorry to those who want a list to be for more people or
an awareness day for more people but I want the opposite. Get your own
‘awareness days’ and for f*** sake PWMEs, please stand up for yourselves or at
least let people with some balls who feel this way stand up instead of banning them.


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