Archive for May, 2010


The March for ME – part 1

Just a few personal thoughts on the March for ME; a venture the idea of which was
born late last year and came to fruition last Monday.

I was first alerted to the promise of a march in Whitehall about ME
last December or so. On the face of it I was glad to see that somebody wanted to do
something but I could sense that one or two things needed to be addressed and top
of the list was to seek police permission; holding events of this ilk is not without its
fair share of red tape and this was no exception. Second on the list was to attempt
to give the day a theme and structure.

I had contacted Rob (the chap who had the idea for the march) via
Facebook in December 2009 saying that he may need advice in pulling this off. Between
December and March I had, to an extent, forgotten about it until in March when Rob had
announced that he was seeking somebody to take over the day to day running of the
event, feeling that he may not be able to honour his commitment fully. I contacted
him saying that if he couldn’t find anybody by the end of the week I would offer my help –
a sort of ‘underwriting’ of the event. Within half the time of that deadline
expiring, I found out that Rob had made me an ‘admin’ on the Facebook
March for ME page, soon to be followed by a woman by the name of Ali.

First thing to be addressed was to seek police permission for the event. Very simply,
if there was no permission forthcoming then there would be no event. Since the event
was promised for Whitehall, it fell within the 1km Serious Organised Crime and Police
Act boundary which places some red tape in the way of people wanting to protest
anywhere in the vicinity of the Houses of Parliament. Ideally an application to hold the
event should have gone into the Metropolitan Police before any publicity for the event
had surfaced. Once the public had been told that such an event was to take place
without groundwork being done there was always the risk of something going wrong,
jeopardising the very existence of the event, risking the disappointment of those that
had expressed an interest and exposing the organiser(s) to criticism.

An unpredicted event then happened to delay the handing over of the application form
– a later than expected return to parliament for MPs. We now knew that the election was
to be held on 6th May but what I hadn’t fully anticipated was parliament reconvening as
late as the 18th. We were left with the very real prospect that people would come to
Whitehall and may well not be able to lobby their MPs. The late decision was taken to
change the date of the march from 12th May – international ME Awareness Day – to the
24th May. This, of course, coincided with the Invest in ME conference around the corner
in Birdcage Walk. It was obviously imperfect but my reasoning was that if we had gone to
Whitehall on the 12th, no politicians would have been there. The very fact that the event
was originally planned for Whitehall dictated that there had to be a political angle; how
could you propose something like this for Whitehall without the relevancy of politics?
If we had gone for the following week (week beginning 17th), people may well not have
been able to go to the march and then the IiME conference the following Monday. I was
fully aware that if the march was held on the 24th there would be many who could not
attend the march. However there might have been the very small chance that some people
might have popped along during a break in the proceedings. However I was also aware
that a number of the people who would attend the IiME conference would not be seen
with the likes of those (us) who would be prepared to stand and sit outside a governmental
building with banners, placards and leaflets; there has always been more than a modicum
of snobbery in the ‘business’ that is campaigning for proper research and treatment into
Myalgic Encephalomyelitis and I was more certain than certain could possibly be that there
would be many who simply wouldn’t touch this with a twenty-foot medicated barge pole
belonging to somebody else.

The application for the march went in. Date for planned march? 24th May.

A few days later on the 4th of May, I had a call from the police station the application
form was handed into. A Police Constable who worked in the events planning department
wanted to arrange a meeting with me. In a meeting that lasted around forty minutes a
day later, I presented the ‘back of a cigarette packet’ plan I’d come up with and had
forwarded to Rob and Ali a few days earlier. The PC suggested changes to the plan.
He suggested that the original idea of marching (remember, this was a ‘march’ after all)
from Trafalgar Square to the Department for Work and Pensions/Department of Health
at Richmond House, Whitehall should be dropped as it would be then easier to police.
There was also the little matter of ill people, probably a number of them with walking
sticks and general mobility problems, being spared half of the original intended route.
Another change was to reduce the duration of the ‘march’ – six hours came down to five.
I had considered this myself so when the PC mentioned this I was more than happy to
agree. Again not only would it be beneficial to them, it would be beneficial to us. Nearing
the end of the meeting, he showed me a draft letter addressed to me allowing permission
for the march.

From that moment on, it was all systems go, to use the cliché in an exaggerated manner
for what was essentially going to be a small-ish gathering although I was still unsure of
how many would actually turn up. Indeed the question I was asked more than any other
by the police was “how many are attending?”. I had given the rough figure of eighty or so
purely on the basis of the Facebook March for ME page. I knew that some wouldn’t attend
who said they would but I had to account for the possibility of some of those who said
they might attend actually attending on the day, not to mention those who don’t *do*
Facebook who might attend. Based on the predicted numbers, the Met (and indeed the
organiser and stewards) could decide what precisely was needed for the day – in their
case how many officers were needed. The logic went that a gathering of twenty and
under would not need a day-long presence. since the predicted number was in the
region of eighty, four or five might eventually be needed. The only real concern now
was whether I should employ the prudence of taking out the public indemnity insurance
that the PC had suggested to me.

The main thing was that PC Turnbull and me had agreed on a plan
for the day and it was green-lighted.

So, here we were with a timetable, a date and a ‘go for launch’.
As I mentioned earlier, the fact that it was to take place in Whitehall dictated that it
must have a political point. This made things slightly more awkward than the small
protest I organised outside the Royal Society of Medicine two years earlier. For that
there was a definable “baddie” and, as Dr Evil might (slightly inaccurately in this case)
say, an “underground lair”. The RSM building was hosting a conference on ‘CFS’, packed
out with psychologists and psychiatrists. PWMEs were annoyed. Simples.

This was not quite so ‘simples’.

If you don’t get proper medical treatment, you blame the doctors perhaps? A demo/
rally/march/protest in Whitehall isn’t necessarily relevant in that case so it was either
move the march (no – that would have changed the original idea and spirit) or make
it as relevant to the surroundings as was possible.

Hello government-funded FINE trial!

Now that there was at least one target that could be aimed at, me and Ali
(Rob had indicated that a back seat was probably what he was going to take) set about
trying to get some displays ready for the day. Ali got in contact with someone who
came up with a logo that included a blue ribbon (something that I’d previously had
misgivings on and was still not convinced by but other people were happy with it and
why should I veto something if I felt it was for the greater good?), the name of the event
and the day of the event. Something seemed to be missing though. I came up with the
tagline of “less psychiatry, more biology” and I thought that was OK and left it at that.
About twenty minutes later with this legend staring at me from the screen, the obvious
eventually occurred to me – “less psychology, more biology”.

How could I not see that earlier?

Even now I’m quite happy with the logo. It looks smart, quite professional even. It tells
you what the event is, it tells you when it is and it tells you why the event is (in need of).
The person who designed it did a good job IMHO.

I had previously mentioned to Ali about a small collection that could be arranged for
people to pledge money to for what would eventually go towards a banner of some sort.
However I felt we needed to put the order in no later than a couple of weeks before the
march to realise this. Ali did far more of the running here, in a manner of speaking,
than I did and nearly managed to achieve this in a much shorter time scale than I possibly
imagined. In the end I don’t think either of us could agree on what should be visible on
the banner and considering I had to work on text for flyers and letters for the day, I
gradually withdrew from the banner idea thinking that people would bring their own
banners and knowing that Ali was very much also pursuing professionally printed flyers
for the day.

One of the sticking points regarding the banner was that I was, quite frankly, not keen
on promoting charities that really wanted very little to do with the ‘hoi polloi’ that would
be holding the blasted thing up advertising those very charities. I’ve been involved
with a number of demos/protests/rallies regarding ME and I knew that we would be
advertising organisations that would not give us any favours in return and I was damned
if I was going to promote their wares. In the end some references to charities were seen
but that was one of the few things that I quibbled about on the day.

Curiously enough, the charity that did get a namecheck on the day at least did supply
us with something. None of the others did.