Barbara Windsor on the Parkinson TV Show December 25, 2004

One of the members of the 25% M.E. Group (of which I am a member) sent me and some other M.E. sufferers the following email. At the end of this post is a copy of my response. If others wish to email ITV1, please feel free.

Hi all, Sending this as a round robin even though it is a busy time just on the offchance that some of you might have the time and energy to write in as the more who do the better even if it is just a brief comment - it is awful to get such adverse publicity for ME at peak viewing time.

Barbara Windsor, on Parkinson, ITV1, Christmas night, said that Epstein-Barr, (what most people call glandular fever), is 'a bit of a pull yourself together illness ... ... just like M.E.' and she explained how she ignored advice to rest. I put the fuller text far below.

I sent the following comment to feedback at http://www.itv.com/page.asp?partid=1215

You need to put in the time 10.30pm Christmas day and your area. There is also an email address dutyoffice@itv.com
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I always enjoy Parkinson but was utterly dismayed at Barbara Windsor's comment saying that ME is one of those 'Pull yourselves together' illnesses, and would be improved by exercise.

I trust you will correct this inaccurate and potentially very harmful advice. Unfortunately many fatigue illnesses are lumped together and confused with ME and while exercise can help people who are fatigued through eg depression, those suffering from the neurological illness ME run a grave risk of being harmed by pushing themselves to exercise.

The 25% ME group www.25megroup.org (representing the 25% of ME sufferers who are severely affected and house or bedbound), did a survey of members and 82% of those who had tried it had been harmed by 'graded exercise'. Ambulant patients have become bedbound after trying it.

I trust you will correct this misinformation and also inform Barbara Windsor as well as I am sure she would be horrified to realise that her comment could have such a devastating effect on people's lives.

It is not just the appalling potential physical harm, but this attitude causes untold mental suffering too when friends and relatives watching the programme assume that an ME sufferer is ill simply because they will not pull themselves together and blame them for their illness. Imagine if this were said to MS, AIDS or cancer patients!

Furthermore this portrayal of ME sufferers gives ME adverse publicity and has a detrimental effect on fundraising for research into physical causes, diagnostic test and a cure for ME, and this is seriously underfunded as it is. The government has so far given all the research funding to psychiatrists to find a way to manage the illness, but nothing to physical researchers to find a cure.

Barbara Windsor mentioned being depressed, but although some ME sufferers are depressed as indeed are some sufferers of other chronic illnesses like MS, AIDS or cancer, very many ME sufferers are not at all depressed and take a positive approach to life.

As an ME sufferer, bedbound for 8 years, I would like to point out that several times after bouts of post viral fatigue syndrome I did struggle into work before I was fit as I so loved my job teaching blind students and it was hard to find an equally specialised replacement when I was off sick. However it finally became ME and for the last 8 years I have been unable to sit up in a wheelchair, but I have never been depressed, and am always hopeful that I will improve one day.
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Excerpt from Barbara Windsor interview on Parkinson Dec 25th

Michael: You're not doing panto this year because you've been poorly, haven't you?

Barbara: Yes, I have. I was poorly for about eighteen months. It's a silly illness called Epstein Barr. It's like ME. It's one of those, pull yourself together illnesses, a little bit like that. I was over doing it and it was a warning. We were gonna take a year of Eastenders and I was gonna do pantomime and I had a taxi accident. I wasn't feeling good, and I had this taxi accident. And one day I went to get out of bed and I just collapsed because you get paralysed in the legs and you get all sorts of symptoms and the worse thing is the depression. And I've never had depression, you know.

Michael: No, you don't strike me as the type who would get depressed.

Barbara: It's awful and you pray at night and you say, please God, I don't want to be a nuisance. And also being married to Scott who's so much younger. Obviously when we got together I went through a load of old sh*t with the papers, saying she should be thinking of getting a good night's sleep. (Laughter) Well, maybe he might want a good night's sleep! (Laughter) And all things like that. And she hasn't thought about when he'll be wheeling her around in a wheelchair. And suddenly I thought, ah, this is going to happen. Because I broke my ankle at the same time. So, I was in the wheelchair. And I remember thinking, please God, I've got a great old man and please don't let me wake up in the morning because I don't want to be a nuisance to my Scott, I've had a wonderful life. And I really used to say all that. And the the next
morning when I woke up I'd say, thanks very much, and have a right ruck with God. (Laughter) But when I broke my ankle it made me think less about the Epstein Barr. Because the specialist, I said, how long is this going to go on for? And he said, as long as it takes. And I said, aren't there any vitamins, any antibiotics. And he said, no you just go home to bed. And I said for how long? And he said, for as long as it takes. But when I broke the ankle, I started to get up and do things, I forgot what he'd said.

Michael: And at the age of sixty seven you've done a keep fit video. Did that come out of that?

Barbara: Well sort of. I got a phone call from the video people who said, you look absolutely marvellous, you're a very good role model for the older lady. And I thought, yeah, me and Joan Collins. But I said, well I might look OK, because I put on a front, that's very me, the show must go on. But I don't feel good because I've laid in bed for nine months so everything feels creaky. So I said, if you can find someone to work out in the home, I don't want to go anywhere. So they found me this fantastic little guy, Roy Gayle, he was great little black guy.

Michael: And it's aimed at the sixties upwards? And you do it in your home?

Full transcript available at: http://parkinson.tangozebra.com/
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Here is a copy of the email I sent to the feedback section at ITV1:

I was shocked to hear that Barbara Windsor had referred to Myalgic Encephalomyelitis (M.E.) as "a bit of a pull yourself together illness".

For the past five years I have suffered dreadfully with M.E. which is getting progressively worse. I have lost my mobility and am horizontal 23.5 hours a day 24/7 and have not been out for the past two years. I am too ill to sit up or stand longer than ten minutes.

I feel hurt that someone in the public eye - and in front of millions of viewers - was so dismissive over such a devastating neurological disease as M.E.

Those of us who suffer - as much as those with severe Multiple Sclerosis (M.S.) - are usually invisible to the general public. Tens of thousands of us are too ill to even be out in wheelchairs. Some are so badly affected they have to live in darkened rooms and be fed through a nose tube. It is not a well known fact that a quarter of all M.E. sufferers are severely affected and suffer long term chronic illness and profound disability.

Only fellow sufferers or those who care for us know the incredible battles we face just to get through the basics of feeding and personal care each day.

It's been said the quality of life for those who are severely affected by M.E. is the same as those suffering from end-stage AIDS and that the daily suffering is the equivalent of AIDS patients in the last two weeks of life.

Here's requesting that Michael Parkinson and Barbara Windsor, and the management responsible for the show, please do everything within their power to correct the grossly unfair (and damaging) misinformation they are responsible for broadcasting to millions of TV viewers in Britain.

Ms Windsor is lucky she did not find herself among the ranks of quarter of a million other severely affected M.E. sufferers in the UK. Had she done so, and heard someone on prime time television implying that one can get well from M.E. by pulling yourself together and excercising, she might have wanted to do us a service by promoting the desperate need for funding and research into the this illness, that I can only describe as a living death, for which there is no treatment or cure.

Anything ITV1 can do to help limit the damage done by the the Michael Parkinson Show would be gratefully received by tens of thousands of fans of the programme who also happen to be M.E. sufferers and their carers, families, friends, doctors and health care professionals. Thank you.