STRIPEYSOCKS BLOG (not part of the book!)
SPEECH AT THE HOUSE OF LORDS
I am putting my Executive Director's speech here on my blog as it will be a while before the official commemorative booklet about Tymes Trust's 25th Anniversary is available for you to read.
SPEECH BY JANE COLBY, HOUSE OF LORDS AFTERNOON TEA, 5 JUNE 2014
After the welcome and introduction by Lord Clement-Jones, Tymes Trust Founder Patron
anniversary is really special, isn't it? It's something to celebrate.
Or is it? If we didn't have this dreadful disease to contend with, if
there were a cure, so that children didn't have to spend years of
their life in darkened rooms, in pain, Tymes Trust wouldn't be
one day. Until then, what we are
celebrating is the success of young people succeeding against the
odds, and the dedication of those who are helping them. And of
course, there are presentations to be made. More of that shortly.
week is volunteers week. As you know, everyone at the Trust works pro
bono. Along with our guests, we have some of our Advice Line Team
here. All of them are either parents of young people with ME, or
people who've had to cope with ME themselves. That's because it's so
important, when people call us, that they have confidence in the
person they speak to, someone who knows from personal experience what
they are going through. We also have Trustees here, and Patrons. Our newest patron is John Whittingdale MP, who's often on our
screens because he chairs the Select Committee on Culture, Media and
Sport. And we have some of the professionals who work with the Trust.
A great team. And of course, we have our partners, the CEO and staff
from Nisai Learning.
let me give you a theme for our 25th
anniversary year: FIGHTING INJUSTICE.
All of us are doing that. It's a big part of our work. Because, in
helping families whose children have ME, we are seeing some appalling
injustices. How can this happen? In my view, it's because people who
should be listening to the children themselves, about how they
how ill theyare,
often don't. The successes of the young people we're going to hear
about show how important it is that we do listen to them and meet
their needs. Because that's why they've been able to succeed.
first became aware of injustice at the age of 4. In hospital, on my
own (no parents allowed) sharing the room with two big rough boys.
in. I think the nurse liked him. [Laughter] And he gave them a water pistol.
When he left, they squirted it at me. Down my neck. Sounds funny now,
but it wasn't. I'd just had my appendix out, I was cuddling the
blanket round me, my mummy wasn't there, I wanted to go to sleep. I
asked them to stop. When they wouldn't, I told them to 'Shut up!' I'd
recently heard that somewhere and I knew it was rather rude.
the nurse came I told her all about it. She rounded on me. "Where did you get that from? You mustn't use that sort of language."
I have no idea whether she told the boys off. I don't remember that.
I do remember the injustice. From a nurse. Whom I had trusted. On my
own, at the age of 4. Why am I telling you this? Because children
remember. If an adult doesn't listen, isn't kind, doesn't help, they
remember. It can colour their whole lives.
Waite, one of our Patrons who's here today, launched our book of
poetry by young people with ME in 2004. Here's what one of them
Please don't tell me I look just fine,
Please don't say that I'll be right in no time
When I can hardly make it through the day.
You don't have to live this life
So please don't tell me you know what it feels like
Or how it really is to be this way.
Please don't tell me I'm just a little tired,
Don't shake your head and say I'm not really trying
When I want to spend some quiet time in bed.
"Come on, let's get you out the house,
We all have our ups and downs."
You haven't heard a single word I've said.
there's the little girl on the back of our new poster. Eight years
old, writing to her therapist to say she doesn't like coming to see
her because all she does is push her to do more, when she's not well
enough. And on the cover, our new Young Officer, Ben Burgess, age 11: "No,
you don't know best!"
just read you what the late paediatrician Dr Alan Franklin said about
that. I asked him, "What is the effect of trying to force children with ME into school?" He answered: "The family usually say, "We've had enough of this and wse're not going to see you any more. We're going somewhere else." So I asked, "Do you feel that's a healthy reaction?" Dr Franklin: "On the whole, yes. I think parents are pretty good at recognising what's what."
isn't well enough to be with us today but we have his Young Officer's
pack with us, and his Young Officer's Card : his title is Young
Campaigner. Could Carla collect it for him, and maybe post it on?
Carla was one of our young members for years and she's just
joined our 26+ group. Let's give Ben a clap, in his absence. Well
this 25th anniversary year, then, we are focusing on the theme of
I was commissioned by an academic journal to document how parents of
children with ME are, almost routinely it seems to us, blamed for
their children's illness. And of course, once that happens, the
children also don't get the education they need. This is a huge
injustice. The working title of my piece is Nature
Abhors a Vacuum: in
the absence of a cure, doctors are blaming sick children's parents
when their treatment doesn't work. Then
at the end of June, we shall be alerting the media to proceedings the
Trust is taking. I have promised not to say more at this stage, but
it is quite high profile. And we are about to launch an investigation
to gather more data on the bullying of families that is going on. And
we shall publish that. Because it's wrong, isn't it?
As well as all this, we
have just launched our Good Practice Guide to Education for Children
with ME. This is for GPs, schools and families and you all have one in your pack. The GP is the doctor
closest to the family and in the best position to offer regular
support as needed. We're happy to talk with GPs and we do get
approached by professionals for advice. It's an empowering document
for GPs, who often feel they just have to go along with something
educationally unsuitable, just because it came from a paediatrician.
That's not correct.
as children remember injustice, they also remember those who really
have listened, and have helped them. Music
teacher Paul Willsher was nominated by a Tymes Trust member for all his help and support, to receive the Trust's Young
Hearts Award. I should just say that the Young Hearts Award developed
from the project with Terry Waite, because the day he launched the
book became Young Hearts Day, when we remember children with ME
everywhere. And what better than to recognise the teachers and
doctors who will be remembered by their pupils and patients all their
lives, for their kindness and support. [Paul was unable to attend; his Award was presented locally.]
now we come to the Awards to students studying with Nisai Learning.
I'm absolutely thrilled that last year 100% of the ME students passed
their GCSEs and A-Levels, and 80% of them were A-C grades. That's
above the national average.That really is a testament to their
application and to the work of their teachers. [Citations and Awards].
Well done all of you. One more round of applause please.
SCHOOLS SWEPT BY ME
This is what Britain
woke up to on May 22, 1997.
ME on the front page,
blanket media coverage. The moment when the scale of ME in children
finally became undeniable by the medical establishment. Remember?
Sarah Boseley of the
The largest study
ever made of the controversial illness ME, the modern plague doctors
call Chronic Fatigue Syndrome (CFS) shows it is responsible for 51%
of long-term sickness absence among schoolchildren.
yesterday are certain to heat further the debate between sufferers -
who believe they have fallen victim to a viral infection - and the
medical establishment, which largely thinks it is primarily a
She went on:
One of the authors
of the report yesterday called it an “educational timebomb” and
called for help for victims to study at home, in direct contravention
of the advice of three Royal Colleges, who in October urged that
children return to school.
The study, by a
former head teacher and a microbiologist, was conducted in more than
1,000 schools in six local education authorities over a five year
period, from 1991 to 1995. It found that 42% of staff and children
away for more than two months had ME. It was 51% among children
Jane Colby, a
former head teacher recovering from ME who is one of the authors,
said: “This disease shows a sinister pattern right across the
school population. No one can deny how serious it is.”
The 1,098 schools
which agreed to participate in the study - nearly 3,000 were
approached - were asked to report the number of children and staff
on long-term sick leave, and to give the reason. Twenty per cent of
schools responding said they had cases of ME. In 392 schools,
long-term sickness absence was reported, out of which 224 blamed ME.
Next came cancer and leukaemia, reported by 161 schools.
Going into further
prevalence of ME among schoolchildren on these figures was 70 per
100,000 children, the authors said, and 500 per 100,000 staff.
Ms Colby said
theirs was “only the baseline figure” for children with ME.
Various schools gave the reason for absence as “prolonged
undiagnosed viral illness”, which she believes is probably ME.
There were also clusters of cases that lay in the areas of schools
that chose not to participate.
“What is worrying
is that nobody is taking it seriously. Nobody is doing this
officially. We're looking at a very big problem producing enormous
Ms Colby and
co-author Elizabeth Dowsett, honorary consultant microbiologist to
the South Essex Health Trust, called for children with ME to be given
special support to allow them to learn at home.
“The purpose of
education is to educate, not just to put children into schools.
Social isolation can be addressed separately.”
Then we get to the
The Royal College of
Physicians, which was part of a joint working party on ME with the
Royal Colleges of Psychiatrists and General Practitioners, countered
yesterday that home tuition was not the best thing.
felt the best approach is one which encourages the child to lead as
normal a life as possible, with regular school attendance - there is
some evidence that this leads to a more rapid recovery.
absence from school, as with other causes of ill health, affects not
only academic performance, but also makes it increasingly difficult
to maintain a school-based social life and eventually to return.”
Since then, of course,
interactive virtual education schemes that incorporate social contact
have shown that children with ME allowed to study at home attain
higher levels of academic achievement, not lower. And their health is
saved from what is now known to be relapse-producing physical and
mental effort to attend school and study in lessons designed for
people who are not ill.
The Guardian continued:
medical director of the ME Association, said the report should help
children with CFS who were often misdiagnosed or not treated
properly, even when their illness was recognised.
always understand this illness. The respsonse seems to be one of two
extremes,” he said. “Either you are told to go to bed, which is
completely wrong, or you are told to exercise and pick yourself up.
It actually needs a balance.”
The Royal College
of Physicians also disputed the assertion from Ms Colby and Dr
Dowsett that “the clustering pattern suggests that ME results from
an infection”. They claimed the biggest cluster extended over a
number of schools “in an area containing recreational water heavily
polluted with sewage”.
They called for an
investigation into microbiological agents which could trigger an
epidemic of ME among children.
Since that time, work
by John Chia MD in America is showing up the long-term persistence of
enteroviral particles in the stomach, and work at Dundee university
has shown a high rate of white blood cell death, and inflammation,
consistent with a persistent viral infection.
Department for Education accepted all my recommendations in its 2013
statutory guidance to local authorities about the education of
children too unwell to attend school in the normal way.
These have been
excellent successes and they show the importance of long term
commitment to this work. But it is always necessary to be vigilant.
The ever-growing “chronic fatigue” empire could well undermine
what has been achieved, with its attempts to tell parents they must
adhere to strict regimes; regimes that many report are making
matters worse. To sideline humanitarian - and legal - recommendations
for education while the child recovers would be reprehensible.
THE DAY AFTER MONDAY
This is The Day After Monday, ME
Awareness Day. On Saturday I worked on my article deconstructing the
nightmare afflicting families accused of child abuse or neglect, and
threatened with having their children taken and put into psychiatric
units for physiotherapy. I want that published as soon as possible.
It needs to be out there, working for families, working for the ME
Community in general. I arranged my references. I reworked the
article. I converted the references into Harvard format.
Porridge-brain returned. Where did Saturday go? I went to bed. Sunday
seemed to pass in a blur. I did some edits and some more edits, and
sent off the final draft. I think I watched some tv. My brain woke up
again. As it does at night. Getting into the Title Page and Abstract,
by 1.30am I was at a good place to stop. It was The Night before The
Day. I didn't sleep till 3.30am. Only an hour or two later than
usual. Not too bad then.
I met some people on the morning of The
Day. I had accidentally committed myself to an engagement on – wait
for it - The Same Day. A short game clinic, gentle putting and
chipping, a bit of pitching, to keep the blood flowing and the
osteoporosis away, with my tutor and a group of other Ladies. I
didn't like to let them down. I went. Well I reasoned, it's only five
minutes' drive and I should be grateful I can do things like that
after so many years. The years in bed, the unstoppable pain, the
assembling my limbs in a wheelchair, the times when I said things
like “I'm going to have a bath to prove I can wash myself.” I can
hardly play in the weekend when it's crowded and everyone is rushing
around. People often say “Have a nice weekend,” not realising
that this is prime work time, when others are frenetically cluttering
up shops and roads. I need to take my time - my time - at
everything. “Have a nice Bank Holiday. Going out?” You are
joking. Pick up a few things in the village and shut the door.
This clinic will freshen my mind for
the afternoon's work. The computer is off-limits. After this, I'll
rest, I'll get my brain in some semblance of order before #AskJCC, my
4pm Twitter Q&A. Oh. It's a palpitations morning. Lovely. By the
time the clinic is over, I am on autopilot. Unlike autocorrect, it
doesn't generally make inappropriate assumptions. I eat fruit and
drink tea. I start driving home. Oh, I forgot the milk. I turn the
car round in a farm driveway. (Later I see that my trolley token, the
pretty one with the pink daisy, is gone. It's not in the car. I
probably dropped it in the car park. As you do.)
A friend who can see my exhaustion
kindly takes me down to the tearoom at the river. We stroll along the
bank, past the narrowboats, some gleaming with bright painted
flowers, some sadly left not knowing when they might next be attended
to. We listen to the birds. And what a lot of birds there are.
Tweeting. Of course, tweeting. I'm not going to be allowed to forget
that. I check my phone. As you do.
A bedraggled dog comes sniffing up, its
owner calling after it.
“Stop that, get away from the people”
Then we have tea. A big mug, sitting by
the lock, trees waving in the wind, the rushing of the weir loud and
wet. My phone dings. And dings. And dings. I attend to it. Of course.
Technology doesn't 'get' the words 'rest' or 'break' or 'chill'. Why
should it? It wasn't designed to. It was designed to do stuff, all
the time, forever and forever and forever. Sometimes I feel like that
By 3.30 my brain is back in gear.
Office. Chair. Screen. I type on the computer and read direct
messages on the tablet. A good session is had by all. Including me.
No, really. A good session. Autocorrect rears its head at one point
but I issue my own correction next day. Today, in fact.
And then my kitchen scissors were gone.
I knew they were gone the Other Day, when they first went missing,
but I hadn't thought they would still be gone. They would, somehow,
reappear. They haven't. So I put aside everything else and wrote
Ode to #MyalgicE
Oh I've lost my kitchen scissors from
And I KNOW that they were sitting there
If I change my ME hashtag
Will they turn up in the washbag?
For #MyalgicE's the culprit, that's for
I tweeted it. I didn't include the
headache. It wouldn't scan.
Happy Day After ME Awareness Day.
Normal service will be resumed as soon as possible.
In my childhood, the
monster lurking round the corner was called THOE. Everything would be
going along smoothly and my friend would say: “You never know
what's waiting round the corner, though...” “Don't you call me
Thoe!” I'd reply. Thoe was always just out of sight. Waiting to
cause trouble. Very patient. We took it to a new level. We began
pulling faces at one another, impersonating Thoe, and laughed.
Thoe finally got me
when I had long forgotten It. That's the way with monsters. As a
newly appointed headteacher, I sat at my desk, turned to the window
and stopped to reflect. That's a snapshot I can never erase. Rain was
throwing itself contentedly at the pane. I like the rain. I like the
sound it makes; it's probably my Irish ancestry.
The first head I'd ever
worked for was a round motherly woman with a mind like Miss Marple.
Loved by parents and pupils, she was the uncompromising major general
of a village school. Now I had one of my own. A new building in a
modern village designed like a Christmas card. I thought how she'd
stayed at her school until she retired. Gave it the best years of her
life, as they say. “I could do that. If I wanted.”
Round the corner, Thoe
smiled. “Oh no you couldn't.”
I caught ME (yes, I did
catch it, one sunny day, just after the Maypole dancing – the pain
was beyond imagining). Four years passed, years of severe illness and
disability, repeated struggles against it, and repeated relapses. I
tried many ways to keep on with my job, many variations upon the same
theme; how to build in sufficient rest time to enable my body to
heal. There were improvements. And setbacks. Often, I was either
treading water or going under again. Finally I took a dramatic
decision to leave my profession for good, so as to rebuild my health.
Well, I thought I would improve immediately but I didn't. Not for
many months. After a longrunning series of skirmishes with Thoe's
footsoldiers, I had run myself pretty much into the ground. I'm
afraid that's a fairly standard result when the body is trying to
recover from ME and we don't let it. And that's what we do unless we
are correctly informed. Informed, not just about the nature of ME,
but how to live successfully with it. This being the most important
thing of all.
What got me thinking
back on all this was dealing with a question from a teacher who is
going through much the same. She clearly wanted to know if there was
some way around the problem. So I shared a bit of my own experience.
Recovery from ME is often a long drawn out business and no-one can
know how complete their recovery will be. Most sufferers have some
residual limitations; even if they look normal and seem to be living
a normal life, a few enquiries usually reveal that they have had to
adjust to these limitations.
I have always totally
loved teaching. It is perhaps surprising that I never regretted my
decision to leave. I felt as though I had come to my senses in
realising that I had to deal with things as they were, not as I would
like them to be. In the end, without one's health, one can do
The bottom line is that since then I have had the
opportunity to help far more children and families than I would ever
have done had I remained the head of one school. So it turned out to
be a positive move, leading to a fulfilling future and far better
But I don't know how
Thoe feels about it. I am being careful of corners.
STOP IT AT ONCE!
the moment I'm swapping one coal face for another; I am at last
managing to embed some writing time into the hours spent on Tymes
Trust work. Sorry for the break! You will all know the reason:
either we run
ourselves into the ground, or we manage to build rest periods into
finally adopted the maxim 'Stop it at once!'
which amuses my twitter followers and regularly warns me off
overdoing things. Even if I
don't always listen to myself.
is good to sit on my sofa, pick up my tablet and check what's afoot
on twitter, knowing my tweets must fit into just 140 characters.
Sometimes the retweets come thick and fast and I know I've reached
thousands; more often it's a group of us tweeps, busily discussing
some pressing topic. I like the personal nature of twitter. But I
especially like how it forces you to compress a thought into a clear,
concise statement. Here's a selection. I hope these
observations are helpful (most hashtags/twitter handles of
hardest thing 2 cope with in my experience is uncertainty. But the
body is constantly working to heal itself.
known very bad cases incl mine that have over many yrs slowly
transformed into relative normality. Amazing.
my worst I was bedridden, muscles like water; I had to take a rest
halfway through chewing a mouthful of food.
stage lasted long time (brain so badly affected I don't actually
recall how long) then wheelchair for years.
remember the day I realised- I didn't have ANY pain ANYwhere. 1st
time in a year. The daily&nightly endurance test of pain had faded.
In response to
tweets on fainting
done that! Blacking out and crashing through my young son's bedroom
door in dramatic fashion..
just deciding enough is enough & sitting on the ground. In train
stations, anywhere public!
In reponse to Q:
what's your feeling on the idea of "Finding a baseline"
'BASELINE'? Don't get
me started on this nonsense. "I refer the honorable gentleman to
the answer I gave some moments ago"
Yeah, file 'baseline'
with 'trigger'. Jargon. Leave baselines to @andy_murray
He'll make better use of it.
Seriously: my earlier
comment was on fluctuations. ME has diurnal fluctuations (during the
course of a day). Each person has a 'best' time.
So if you have a best
time of day (brain at max arousal) you can do more then than at other
times. Therefore it would be a moving baseline!
ME rarely stays on
steady path. Fluctuations part of it. 1st thing yr body thinks on
waking: "Now how am I 2day?"
In response to a
tweet about GET
Not surprised. Graded
exercise in pure form removes use of one's intellect to respond to
the body's messages
The urge to Do Stuff
(often making ourselves worse in the process) is NORMAL folks. Psychs
On managing life
Don't ask. Tell it. I
told my virus I didn't mind giving it a home if it would just not
give me 2 much trouble!
Try talking to the
enemy. Negotiate a truce. Try for an accommodation so u can co-exist
without too much pain.
Learning what your body
can manage, adapting to new lifestyle, with built-in opportunities
for energy saving, helps to turn things around.
That's the way 2 do it.
Practical support is bedrock of managing ME. Try for an energy
I can only continue
fighting4MEkids by trying to preserve myself.
Once dreamt I was
running down lush green grassy hill. Exhilarating! Woke happy. My
brain was being kind to me!
Nearest I got to that
in reality is a few hasty steps after a runaway golf trolley or a
wayward widebrimmed sunhat bowling down the fairway.
More than a few frisky
steps and it's a case of wailing "Hey, someone, stop it before
it crashes into the lake..." Better than an ME crash.
When children wME
improve, people assume it's leaving the body. I view this as the
virus dozing or hibernating! Ease off whenever it wakes.
On kindness of
Totally agree. Small
kindnesses make huge difference to people's lives.
Have also experienced
kindness of strangers. One guy got out of a train to check with
driver that it'd stop where I wanted!
When u think of it, so
much of standard advice to pwme (exercise, sleep, school) only
suitable if you're well!
In effect they are
saying "Act as healthy people do and you'll be healthy too."
I mean what is that? Logical or what?
Yes. 'Services' has
become a word to distrust. Services shd consist of practical support
(in absence of cure).
Remember u needn't
agree to anything you don't feel is right. You can say thanks &
you'll consider it.
It's those who believe
that making effort actually causes the body's recovery who are
putting the cart before the horse! And causing misery.
Healthy body whose
muscles respond normally to exercise gets stronger & fitter as a
result. ME involves muscle damage that needs to repair.
In response to a
question on child numbers
The standard figure
media often quoted is 25,000 at any one time. Calculated by me from
data known in 90s.
Tendency recently has
been overestimation based on loose 'fatigue' criteria. Likely
includes diff conditions.
On school absence
ME biggest cause of
long term sickness absence from school IN STAFF AS WELL AS KIDS.
Can't say that's school phobia! We've known since 1997.
On sharing the
problem with Tymes Trust
If u feel hopeless
there's usually something you can do to improve things. Even sharing
the problem helps. Our Team understand.
Our online publications
are available to all and anyone can consult Adv Line. We have an
adult gp called '26+' with annual sub.
On managing ME
Tommy Cooper: Man went
to doc: "Dr, it hurts when I do that." Dr said "Don't
do it!" Quick Tour of ME lists 'convalescence'.
On erroneous child
1st case I personally
knew of child w/ME incarcerated in psych unit for treatment was 90s
in UK. Court injunction prevented publicity.
After we attended a CMO
Working Group meeting, his paediatrician & I tried to visit. I
talked us thro keypad-guarded door but visit denied.
We both attempted to
visit the child in the unit because his paediatrician was so
concerned about him & thought we should try.
This was before
Panorama. Panorama tried to uncover statistics and publicise the
problem. I did the questionnaire for the BBC.
And yes, they would not
allow a visit from the very paediatrician whose patient the child was
until his incarceration.
Frankly I was astounded
that they had the power to keep him away. I can assure you there was
quite a discussion!
So many years in bed or
in a wheelchair taught me that only those who've been thro it or
cared for someone with it can really 'get' it.
Makes it all the more
remarkable when compassionate folk make a real effort to go out of
their way to take that leap of understanding
late than never! I have an unwritten agreement with friend from
schooldays that ALL Xmas/bday prezzies arrive late!
ME, asserting control of one's own life - rather than submit to
controlling 'programs' - is key to helping the body&brain heal.
Will reply to latest
questions tomorrow folks. Oh, it IS tomorrow... This weekend has been
like one long #AskJCC!!!
I DON'T DO MORNINGS
I don't do mornings.
Well, not early mornings. Except when I do. And that's when I really
really feel like it (rare) or when I have to (not rare enough).
Doesn't it always catch up with you when you've had to function day
after day out of your natural rhythm? That's what happens to so many
children with ME whose families I deal with. Tutors insist on
arriving at 9.30am. Doctors' appointments are made for 9.30am.
Schools want the child back in class by 9.30am. What is so morally
correct about 9.30am? Maybe it's a throwback to the old nursery
rhyme: 'Early to bed, early to rise, makes a man healthy, wealthy and
wise.' Unless you've got ME. Then it doesn't. Due to a dysfunctional
hypothalamus gland, wise is just about the last thing it is for most
It shows on our faces,
if people would only notice. It shows on the children's faces. Panda
eyes. Skin sometimes white as a ghost. Not the blooming face of a
healthy child at all. Why can't people see? Look, guys, look at the
children. And have some compassion.
What sparked off this
thought was seeing my on-screen face in my latest media interview on
ITV Anglia. Surely not? That's not how I looked in summer, relaxing
in the garden room (which used to be a conservatory, but it leaked –
that's another story). I dug out this selfie on my phone – the one
I know how to use, in contrast with my lovely new one, which I can't
get the hang of. (Can anyone with ME get the hang of a new mobile
just like that? I tried out the alarm function and had to text my son
to ask how to stop it going on and on and on and on... Then I did a
test call to my landline but couldn't find out how to end it. I was
mortified to hear myself muttering in frustration on my own
answerphone, until BT decided I'd gone on long enough.)
So I found the summer
photo. I was right. Not haggard or ill. Relaxed. Just a few of those
friendly 'I'm not so young as I used to be' signs of time, but
nothing like the apparition on the TV. Yes indeed. What we do is
written all over our faces. Too much effort? Haggard and ill.
Whatever the hour (even when the dreaded morning is over and we're
well on through the day) too much effort always shows. Haggard and
ill. However bright as a button we try to act (even though we
collapse later) it stares back at us from the mirror, or in this
case, from the screen.
And then I listen. Nice
little news feature, but I seem to have been cut off mid-sentence.
[Sigh: those recorded interviews. It's always the editing. I much
prefer live.] In 1996, in the original ME – The New Plague I
wrote: 'Now we see ME called Chronic Fatigue Syndrome, muddying the
waters yet further, for this is a wide umbrella term that includes
cases of fatigue-inducing conditions that are not true ME at all'.
For many years both I and Tymes Trust have insisted that ME should be
separated from the disastrous umbrella term of CFS. We published this
call in our 2007 appraisal of the NICE Guideline (just republished in
ME Briefing – not NICE) and we are still repeating it. What
many people derided us for ('Oh no, that'll never happen') has
already borne fruit internationally and in the UK too.
My ME – the New
Plague 2, serialised on this site, opens by examining two
examples of the media coverage I've been involved with. I have tapes
and disks going back, way back. If you haven't read those episodes,
or want to remind yourself, you've just got time before the third one
is published. There's been an inevitable time-gap due to the volume
of charity work and speaking commitments, but now I'm back to the
keyboard folks, and we're off and running.
But I probably won't do
mornings. Unless it's in bed.
The medical establishment as a whole seems to have a poor record of facing the truth. In Royal Deaths and Diseases (Discovery History 23/4/2011) historian Dr Hilary Marland explained that 'The Lancet even denied that chloroform had been administered to Queen Victoria at childbirth. They were so outraged by this idea, they utterly denied it had ever happened.'
The key words here are 'outraged' and 'denied'. How dare such an unacceptable FACT get in the way of their worldview? Clearly, it couldn't be a fact at all. Or if it were a fact, it couldn't be admitted.
We in the ME field see it all the time: how dare this child not get better with graded exercise/graded activity/graded school attendance? That can't be a fact. So this lack of recovery? It has to be someone's fault. Which is to say, someone else's fault. Social services may be called in, with parents feeling accused from the start.
Again: how dare this child need a wheelchair? That can't be a fact. I am reminded of the youngster who was warned that her legs might have to be cut off, in a bizarre attempt to frighten her into walking.
And again: How dare this child need to learn at home? That can't be allowed to be fact. We must take a 'positive' view and insist on school attendance. Except - what is positive about suffering pain and failure at school when success could be achieved at home? And regularly IS achieved at home, by children using virtual education while their body works to restore itself. It's even in the latest statutory guide for Local Authorities.
In short: how dare ME really be a physically and cognitively disabling disease? Even the euphemism 'chronic fatigue syndrome' uses the c word. But no. With kneejerk referrals to mental health services, the medical establishment appears to believe that this is a case of mind over matter: if you don't mind, it won't matter.
Well, it does matter. And we do mind.
What is the common denominator in all these repressive, punitive approaches that have the power to wreck children's lives? Denial. Fortunately, I have spoken and worked with kind, sensible doctors who don't unthinkingly swallow the fashionable, establishment dogma. But its influence is widespread.
Cruel comments and cruel attitudes that breach a child's rights should be brought to the attention of the General Medical Council, and in my view, also to the Department of Health. They need to be made aware.
WORD OF THE DAY : MARGINALISED
In the margin, stuck at the edge, ignored.
Someone mentioned that word on the
phone and my brain grabbed at it, the elusive word I'd been seeking,
as you do when rummaging through your word-store in a weary attempt
to find the one that's got shoved under all the others, in a crumpled
"And when she got there, the
cupboard was bare." Quite. But here it is, the corner of it
sticking out, waiting to be retrieved and headlined.
Earlier this year I got rather hooked on history
programmes - the jockeyings for power at the Tudor court,
the startling death of suffragette Emily Davison under the hooves at the Epsom Derby, the many ruthless attempts by an in-crowd to silence and
marginalise those whose views, or knowledge, render them
inconvenient, a noisesome presence, a general nuisance.
As I sorted images for this blog, in one of those spooky coincidences, there it was again, the word 'marginalised', directly over my head as I stood for my photo at a Tymes Trust event. And I found myself, not for the first time, seriously questioning the motives of those who seem stuck with the view that people with ME, like Victorian children, should be seen and not heard, told what is good for them and expected not to contradict when a treatment makes them worse. That concept is out of the ark.
If the reality of the patient experience is not what a study concludes it should be, who's right? In what might be a good sign, even the British Medical Journal has begun addressing the need to give patients a voice. That's an improvement on what they wrote about me back in 1997.
So do the present in-crowd really believe they have the
Truth, and everyone else is in error? Or is it just the usual
Darwinian struggle to be uppermost? Nothing to do with the Truth,
just who holds the monopoly of power?
How very base and unaltruistic that would be.
If there was ever an idea whose time has come, it's stripey socks. In ballerinas? Of course. In sandals? Definitely. In your mock croc black patent courts? You betcha.
Once you find it's not only you flouting all the sartorial rules - as you do - but models in glossies normalising your fashion rebellion in their cropped trousers, stilletos and stripey socks, you realise (smugly) that they couldn't beat you, so they've joined you. There's a lesson in that.
Never mind the poem about growing old in a purple hat; forget your brazen refusal to mascara up on the least excuse; stripeysocks puts all that in the shade.
Rise up folks, replenish your sock drawer with ziz-zags, spots, neon pinks and purples, and show the world that boundaries are boring. We will not be told by self-appointed hosiery experts what we will and won't wear in our sandals - nor be upbraided by self-appointed sleep authorities for going to sleep whenever we wish.
What? Not obey the Sleep Police? Not tick boxes, colour in squares, or fill in schedules? People with ME making their own decisions about their own lives? Won't the sky fall upon our pretty little heads?
Shhhhhh. Remember the watchword, people. Stripeysocks.