Posts Tagged ‘encephalopathy

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.

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03
Jul
11

The final confirmation…if not solution. Yet.

Didn’t see this at the time but Iain Duncan Smith lets slip the old “Arbeit Macht Frei” stuff on
BBC TV (click video, 16 seconds in).

Now in fairness he actually said “work actually helps free people” (too many “actually“s in
that last sentence, actually), which is, if you click the “Arbeit Macht Frei” link, not quite
work sets you free” but is, and I’ve deliberated over this for a least three seconds, pretty
near dammit.

IDS or Mike Gardner? As Harry Hill might say, there’s only one way to find out…..

12
Jun
11

“Minister denies fuelling tabloid attacks on ‘workshy'”

Employment Minister Chris Grayling has denied claims the government
had helped fuel press coverage labelling benefit claimants as “workshy”

Disingenuous fucker.

P.S. Oh, by the way this is the same Chris Grayling as in this

24
Jan
11

CBT through the back door?

The BBC’s David Sillito reports on the “Happiness Challenge“.

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?

02
Nov
10

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.

01
Nov
10

Video clips from Whitehall

A couple taken on a mobile phone: