ME - The New Plague 2
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STRIPEYSOCKS BLOG (not part of the book!)
|Posted on June 11, 2014 at 1:50 PM||comments ()|
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
Well, a 25th 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 needed.
Maybe 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.
This 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.
So 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 feel, 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.
I 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. Their dad was let 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.
When 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.
Terry 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 wrote.
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.
Then 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!"
I'll 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."
Ben 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 done, Ben.
During this 25th anniversary year, then, we are focusing on the theme of FIGHTING INJUSTICE. 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.
Just 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.]
And 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.
|Posted on May 22, 2014 at 4:54 AM||comments ()|
SCHOOLS SWEPT BY ME PLAGUE
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 Guardian wrote:
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.
Findings published 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 psychological condition.
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 alone.
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 details:
The average 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 educational deficit.”
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 reaction:
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.
“The Colleges 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.
“Prolonged 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:
Charles Shepherd, 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.
“Doctors don't 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.
The government 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.
|Posted on May 13, 2014 at 1:22 PM||comments ()|
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” (apologetically). “Sorry.”
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 myself.
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 this:
Ode to #MyalgicE
Oh I've lost my kitchen scissors from the drawer
And I KNOW that they were sitting there before
If I change my ME hashtag
Will they turn up in the washbag?
For #MyalgicE's the culprit, that's for sure.
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.
|Posted on April 5, 2014 at 6:47 PM||comments ()|
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 nothing.
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 health.
But I don't know how Thoe feels about it. I am being careful of corners.
|Posted on February 13, 2014 at 11:57 AM||comments ()|
STOP IT AT ONCE!
At 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 our lives.
I 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.
It 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 recipients removed.)
On personal experience
The hardest thing 2 cope with in my experience is uncertainty. But the body is constantly working to heal itself.
I've known very bad cases incl mine that have over many yrs slowly transformed into relative normality. Amazing.
At my worst I was bedridden, muscles like water; I had to take a rest halfway through chewing a mouthful of food.
That stage lasted long time (brain so badly affected I don't actually recall how long) then wheelchair for years.
Still 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
I've done that! Blacking out and crashing through my young son's bedroom door in dramatic fashion..
Or 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" Jane?
'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 should mark&learn.
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 efficient lifestyle.
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 strangers
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.
On ME-affected muscles
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 Physios Urged to Go Cautiously (Physiotherapy Frontline) yrs ago I discussed effect of exercise http://tymestrust.org/pdfs/physiosguide.pdf
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.
Dowsett/Colby 1997 study http://tymestrust.org/pdfs/dowsettcolby.pdf showed prevalence of 70/100,000 in school roll of 333,000.
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.
Take a copy of Dr Dowsett commentary on schools study: Long Term Sickness Absence due to ME http://tymestrust.org/pdfs/dowsettcolby.pdf
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
Quick Tour of ME http://tymestrust.org/pdfs/quicktour.pdffrom @tymestrust covers the basics + I suggest a chat with TT Adv Line: 0845 003 9002.
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 protection cases
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
Better late than never! I have an unwritten agreement with friend from schooldays that ALL Xmas/bday prezzies arrive late!
With 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!!!
|Posted on October 4, 2013 at 6:48 PM||comments ()|
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 of us.
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.
|Posted on August 25, 2013 at 10:09 AM||comments ()|
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.
|Posted on July 21, 2013 at 3:32 PM||comments ()|
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 pile.
"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.
|Posted on June 29, 2013 at 5:58 PM||comments ()|
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.