Archive for December, 2009


Blog entry regarding the APPG on ME, 02/12/2009

A recent posting to the Yahoo! group ‘MEActionUK’
(15th December 2009, I am led to believe) may have left
readers with the impression that I was part of or was planning
to be part of an organised disruption or derailment of
the All Party Parliamentary Group meeting on Myalgic
Encephalomyelitis which took place on Wednesday
2nd December 2009. I did not disrupt and have not
considered disrupting any of the APPG meetings that
I have attended. Below is an email that I sent to the
person whose message prompted this ‘blog’ entry,
Jill Cooper, dated 18th December 2009.

I have subsequently received a somewhat cordial email
reply from Jill Cooper in which, amongst other things,
she states:

I do not think you want to put an end to the APPGs“.

I told her of my desire to make public my side of the story
and she accepted that. I may possibly reply addressing
the points she has raised, hopefully in a similarly cordial

I am fully aware that many are not keen on having
dirty linen washed in public but purely from my own point
of view, I felt it was necessary to state that I did not have
nefarious purposes in mind when I attended the meeting.



I’ve been alerted to a post you made to MEActionUK
in which you make a number of false assumptions.
If I’m not mistaken, I have not written to you
before so I believe the comments you made were so
erroneous as to prompt an email.

Some parts may seem a little terse.

> It did concern me that people had been
> urged to meet up prior to the meeting as
> advertised on ME Agenda. I was not sure what
> this was for and still don’t know.

You seem to be concerned about something you patently
did not want to know about for when you saw us sitting
at the table, I believe you said something along the lines of
‘I’m not talking to you’ to Ciaran Farrell.

However, you continue:

> It also concerned me to see Gus Ryan busy on
> his lap-top from the start of the
> meeting with a dongle plugged in.

…through which I was supplying PWMEs and carers
who could not attend updates of the meeting. All
updates were available to any subscriber of the Yahoo!
group I run. Considering that reports from others
attending varied little from my brief notes, I would
say that my updates were reasonably accurate if brief.

Is there a problem?

> As I possess similar equipment, I suspected
> that this meant that he was connected to the
> internet. Judging by the fact that people who
> were not attending the meeting were being
> urged to go to an internet site to find out
> what was going on at the meeting
> in a message on this site about 10 minutes
> into the meeting, I would guess
> my suspicion was correct.

If the implication is that *I* was “urging” people,
I wasn’t. I put out a message on a social networking
site informing people that if they wanted up to date
news and happenings from the meeting, there would be
updates on the group that I run.

I would hardly call that “urging”.

> So, from my point of view, to come home to message
> after message, on this site, which maligned people
> relentlessly, could only mean that the propaganda
> machine was in full swing shortly after the start
> of the meeting. Later in the evening,
> Laurence, who had been present from the opening
> of the meeting, gave his account of what had happened.

Which “site” are you referring to?
Did this “site” malign people or was it the people
who use the site – there is a difference.
“Propaganda machine”. Please explain.

> It has been suggested that the Chairman and
> Secretary of the APPG orchestrated
> their behaviour. I have wondered all along
> if the orchestration of the events
> during and after the APPG are actually being
> initiated elsewhere.

Now if you are implying that a hidden agenda is
being put into action or even being devised
by the people that sat opposite you i.e. Michelle
Goldberg, Nicky Zussman, Ciaran Farrell,
John Sayer, Paul Davis and Dan Ward, then I
believe you are very much mistaken. I’m reasonably
confident in saying that despite speaking unofficially
for them. I am sure they would furnish you
with similar but more fulsome answers.

If you are implying that *I* am part of some sort of
conspiracy to disrupt or end permanently the APPGs,
you obviously have little idea of what you are typing
about. I have attended every single APPG open to PWMEs
and carers since April 2006 (the only person in the
last four years to do so, if you don’t mind my saying)
and my behaviour has amounted to making one light-hearted
comment about All Work Tests circa 2007. As far as I
am aware, I have reported the proceedings, reasonably
accurately to those who cannot make it, for nearly
four years. I have never been threatened with expulsion
and I have not argued with any of the attendees. In fact,
this email is more aggressive than I’ve ever been at
any of the APPGs.

Some of my recent posts to the Yahoo group that I run have
actually *defended* the APPGs in the face of criticism
against them. Not that you know or seemingly would want
to know about this fact.

You chose to ignore and avoid us instead of asking us
what our views were.

My guess is that your views are somewhat coloured by
arguments over the “NICE Review?” video series on Youtube,
which I made out of my own time and money.
If so, that would make your views on this appear,
to me at least, more irrational since the two are
separate issues.

I will, for reasons of balance and if you don’t mind,
make my views on your assumptions re the APPG public
since your original message was posted to a public
forum – one I am barred from.

Gus Ryan.