Archive for June, 2010


You see the trouble with ME…

Having an opinion in the ‘world’ of ME is not a good thing;
people simply do not like confrontation. I’ve known this for over a decade so why
am I talking about this now? Here’s why:

You’ll notice that I used the word “confrontation”.
I used it because I know that there are people out there that consider posts like mine
to be confrontational. Indeed many of these people would see the likes of me
as confrontational.

You will also notice that, as of the evening of Sunday 20th June 2010, that the post
has still not been replied to.

There might be perfectly good reasons for the lack of a reply of course but arguably
(as it were) there is nothing particularly controversial about my question. I asked
the question because I genuinely want to know what the “deeply reputation-damaging”
material is. It’s not an exercise in being awkward. It is merely a request to clarify
a statement. Maybe I’m thick? Probably am.

I’m in no way singling out Tony Britton. I’ve not really talked to Tony Britton
terribly much but based on the few times that I have communicated with him,
I’ve not had a problem with him. If anything, I’ve probably had more communication
with him than most in the ME charity hierarchies although that is not really saying much.
What I am trying to single out is a culture of conservatism (small “c”) and silence which
has been prevalent in the world of ME for many a year.

I’ve often used the cliché of “you cannot make an omelette without breaking eggs” when
talking about ME politics. You can add to that “nothing ventured, nothing gained”.

Those two clichés mean roughly the same I guess; if you want to achieve something,
you have to occasionally take risks. For what it’s worth, I do not believe and have never
believed that risk avoidance in the world of ME politics is a good thing. Ironically
many of the patients that are members of the ME charities seem not to want to
‘shake things up’ very much, seeing the likes of me as troublemakers who indulge
in counterproductive measures.

I also believe that there is not a little snobbery in the view of these people.
It could also be seen as patronising.

The equation seems perfectly simple to me.
People have been diagnosed with something for which there is very little proper
research and very little effective treatment. Meanwhile these people are getting older
and the financial noose is getting tighter as regards welfare reform. ME was classified
as a neurological disorder over forty years ago but treatment is almost no better
since then.

The current tactics have not worked.

A recent Guardian article referred to ME patients as having been “radicalised”.
The phraseology almost implies muslim extremism and whereas I’m not at all keen
on that and all that that entails, there certainly is growing frustration on the part of
a few people diagnosed with ME.

People diagnosed with ME are being held back as much by their fellow sinking
shippers as they are by their inept and arrogant would-be lifesavers.


The March for ME – part 2

Arrived in Whitehall at about 12.30pm – thirty minutes before kick-off.
Barriers had been put in place to form a ‘pen’ right in the middle of the front of the
forecourt belonging to the Department of Health. I was armed with ten one metre
long blue ribbons for steward identification (I was quite sure I didn’t need ten but
I brought them along anyway), two hundred home printed flyers, a video camera
and a bottle of Ambre Solaire SPF 20 spray – it was going to be 30c and sunny
after all.

Just before that one o’clock ‘kick-off’, the five people who were waiting outside the
barrier took up residence inside. Ali and her sister revealed that they had managed
to get one thousand flyers professionally printed. Ciaran Farrell had, like myself,
managed to home-print two hundred more so combined the total was fourteen
hundred. The two sets of flyers (Ciaran and me had worked together on the text
for ours and Ali had may or may not have worked on the text with her sister for
theirs) were different in style. Ali’s were in colour and consisted of phrases and
sound bites. Mine and Ciaran’s were not in colour. They consisted of a brief
description as to why we were there but in a slightly more pointed and questioning
way than is often the case at ME events. I’m a bit of a veteran of these gatherings
having started my attending nearly a decade ago and it’s become increasingly clear
to me that PWMEs can be *very* defensive. When I approached Ciaran with the idea
of composing the text, I made it clear that I didn’t want them to be defensive. I
wanted them to question and challenge the public’s perceptions in, at the very
minimum, a modest way. Trouble was how do you get so much over to the public
in a small, digestible form that will fit a sheet of A5?

This is what we came up with:

Like spending millions on useless medical research?
You already have.

A recent government funded research trial which used a psychological
technique to “cure” Myalgic Encephalomyelitis (ME) concluded that it was
“not an effective treatment”*. Over £1m of taxpayers’ money was allocated to
this psychological research despite the World Health Organisation having first
classified ME as a neurological disorder as long ago as 1969 and many patients
diagnosed with ME and their carers expressing their grave concern about the
psychological bias towards research and treatment into ME. M.E. has been
defined as a “multi–system illness”** by an international Expert Medical
Consensus Panel who produced the Canadian Criteria as a toolbox for diagnosing M.E..

Despite the evidence of over 5,000 medical and scientific research papers
which recognise M.E. not as a psychological disorder but instead a physiological one
the UK government continues to fund psychological research into M.E. There are
approximately 250,000 M.E. sufferers in the UK, twice as many as suffer from Multiple
Sclerosis, and it was estimated in 2004 that M.E. costs the UK economy around £3.5

The government funds psychological research into M.E..
The government does not fund physiological/neurological research into M.E..
The new coalition government has vowed ‘change’.

Don’t you think that ‘change’ should include reversing this situation?

Essentially the middle bits were Ciaran’s and the beginning and end bits
were mine. Whether or not it made people think positively about what we were saying
is a question I do not know the answer to.

1pm. The trolley basket-load of placards that Ali and her ‘team’ had brought with
them were now up although they were slightly precariously perched on the barriers.
Ali’s sister started untying some of the black fastening tags attached to the barriers
so that they could be used to affix the placards to the metal and the box of professionally
printed flyers was opened whereupon they were were plundered by the attendees for
handing out to the public. I didn’t hand out any, spending the day checking if everything
was running as smoothly as it could. It had fallen to me to organise the event so because
of that, I was liable for any problems that day and some of those might be legal.

Two fluorescently-jacketed police officers on bicycles joined us so I went to introduce
myself. I asked them if everything was OK and for the most part it was other than we
shouldn’t have too many people out on the pavement during lunchtime in case of

Around 2.30pm I looked towards Parliament Square, our intended destination.
I saw a banner so large as for it to be quite visible from halfway up Whitehall.
I walked south along Whitehall, into Parliament Street almost to the corner of Parliament
Square. What I saw was an encampment covering the green. My immediate thought was
that we simply couldn’t head to there because nobody would notice us. I asked the two
police officers could we change the plan so instead of moving towards Parliament Square
at 2.55pm, we could just stay here and ensure that at least *some* people saw us. I had
surveyed the area a few weeks earlier and not noticed anything untoward. Brian Haw and
his anti-war protest was there but then again he always is.
The green was relatively unaffected. Until now.

The police officers, after consultation, agreed to my request.

Temperatures in the upper twenties hastened the formation of group with the intent of
decamping to a pub just a few yards away whilst I headed for the Tesco in Bridge Street
with an order for the people remaining outside the DoH. The particular Tesco in question
had to be the smallest supermarket I have ever been in. At most it was about the width
of two people as it just had the one aisle. It almost got to the point where I looked at
the walls to spot the remains of splattered cats as people found they didn’t have enough
room to swing any.

Upon returning, I sat down for at least half an hour.

The next hour or so saw some comings and goings. The two police officers left as we
were joined by other attendees. A couple whose daughter was diagnosed with ME left
us earlier to go to the Houses of Parliament on the off-chance that they might see their
MP. They didn’t know the name of their MP and reading between the lines they hadn’t
been to the Houses of Parliament before. The chances were that they would be
unsuccessful in getting to meet him or her. Now they had returned.
They had, perhaps surprisingly, managed to see their MP, Clive Efford. It seems that the
meeting came about somewhat fortuitously but the main thing, for now, was that it
happened. Seemingly the couple were promised that their MP would ‘look into’ things.
I took this to mean that the subject would go not much further; there are not many
votes to be had here, are there?

At around 4.40pm, the plan that was due to be executed at 4.55pm, namely heading
towards the IiME conference in Birdcage Walk, was carried out. Ali and her team had
decided to leave for home so me and three other attendees moved towards the south
of St James’ Park, opposite the Institute of Mechanical Engineers building – One
Birdcage Walk. I stood in the shade of a tree whilst the other three lay down on the
shaded grass. I watched the exit to One Birdcage Walk intently.

Eventually some people started leaving the conference and Ciaran decided to cross the
road to chat to exiting people who were willing to talk.

At around 6.15pm, three of us decided to hail a cab to take us back to north London.
However it did take us something like half an hour to finally get a cab which really
was quite something considering we were slap bang in central London!