Next APPG on ME – 09/11/2010

Well as I somewhat suspected when I noted my observations back in March this year, the
APPG (All Party Parliamentary Group) meetings on ME are due to return without public
participation. The meetings are after all parliamentary so it should be no surprise
at all that they should return to that.

However, I have a suspicion that another reason may have also played a part –
the meetings went public. With consequences.

Let’s see….
What do you get when you have a load of people, probably quite a few with different
illnesses but given the same diagnosis, left to rot by the medical profession, mostly
unhappy with the fashionable crap that is Cognitive Behavioural Therapy being the only
‘official’ treatment when for many a physiological trigger followed by physiological
problems leads them to think that it’s….errr….physiological?

You get a bunch of people who are not really terribly happy with the status quo.

What do you get when a parliamentary meeting is held about these people and they are
allowed to attend?

Unhappy people telling politicians they are not happy and sometimes letting their
unhappiness show.

Quel(le) surprise.

Who’d have thought it?
Democracy resulting in hard-nosed politicians being presented with problems by those
that democratically elected them!

My previous blog entry in which I berated those in the ME ‘community’ for not being mentally
tough enough to campaign effectively has been probably my least viewed blog entry of all
time. I am not at all surprised. It confirms exactly what I thought – people are afraid of
confronting it. We now have a situation where people in power are talking about us
*without* us, to paraphrase a memorable quote from a contributor to the NICE judicial
review series I recorded last year

The video clips of the ME blood ban protest last Monday have proved to be the most
immediately watched clips on ME that I’ve ever uploaded to YouTube. Again that does
not surprise me. The clips are unthreatening almost uplifting. There is almost a ‘burying
the head in the sand’ quality about them. I shall no doubt either be criticised or
ignored for this and other similar posts but therein lies the problem. There are very
real and so far insurmountable difficulties in patients attempting to gain physiological
treatment when diagnosed with ME and, as a result, we absolutely have to accept that
the situation is difficult and that situation has to be challenged.

Pressure must increase, not stay at the same level or drop off.
XMRV may or may not answer some questions but the longer thorny issues are avoided,
the longer we will all be here.

Is that what you want?


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