Posts Tagged ‘xmrv

22
Dec
11

I hate to say “I told you so”, but…..

…I told you so.

Within hours of the news of the WPI/Mikovits stuff on XMRV re “CFS”/ME,
I posted something on here about my, what only could be described as, cautious
optimism regarding a linking of a retrovirus and “CFS”/ME
.

Just over two years later, Mikovits was arrested after the WPI noticed
that data had gone missing from their labs. This had come on top of an
increasingly negative set of stories about the integrity of the research
Mikovits had carried out.

Now, this is my point.

I am not a scientist.
You are (probably) not a scientist.
I want an answer as to what causes “CFS”/ME.
I want a cure for “CFS”/ME.
I do not believe that there are psychological or psychiatric explanations
behind “CFS”/ME.
I would suggest that I have personal experience to back that last statement.
However, the rabid, irrational, unquestioning zeal that has supported
the XMRV stuff from some sections of the “CFS”/ME “community” just makes
the rest of us look like utter arseholes.

Just because you, I and others might want something to be the case,
it doesn’t necessarily mean that it is the case; I would dearly love
to see England win the football World Cup in 2014 but hey, you know
what? It probably won’t happen.

“Wishing” and “fact” are two entirely separate entities.

Are you pleased with yourselves now?

You’ve given the likes of the utterly disingenuous Wessely more fucking
oxygen.

You are utterly clueless.
Up your acts, for fuck sake.

04
Nov
10

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?

01
Nov
10

Video clips from Whitehall

A couple taken on a mobile phone:

01
Nov
10

On my way home

Left about seven minutes ago. Said “Good day” to the organiser as I quickly walked past her. She then attempted to stop me, in a friendly way I may add, but as you may have gathered, I was not in the mood to have a friendly chat after the “flopsy” stuff.

I said in this blog that I would like to attend without trouble and that happened but I could not bring myself to stay and chat to the organiser.

I turned up in support of a general ME principle – no more psychological bollocks. I did that and hopefully I provided a bit of a flavour of the day

I’m now in Trafalgar Square in the greatest city in the world and my home town, on my way home.

01
Nov
10

Photos from Whitehall – 4

01
Nov
10

Photos from Whitehall – 3

01
Nov
10

Photos from Whitehall – 2