ME and Ophelia

Wednesday, October 22, 2003

Who cares? It's only me and ME

On September 9, 2003, I received an email from Scott King of Meditainment informing me that The Times were attending Meditainment's cinema premiere in Brighton the next evening and would be writing an article on Meditainment for their new Saturday October 18, 2003, Health Features supplement called ‘Body & Soul’. He said that The Times wished to speak with me about my use of the product and asked if this was okay.

I'd barely recovered from responding to his emails re a BBC TV interview the previous week. BBC TV South were putting together a feature on the health aspects of Meditainment and wanted to speak with someone who was using Meditainment. Scott emailed me asking if I might be happy for them to do a little bit of filming and a short interview with me the following day, and wanted to know asap as "these TV people are very impatient!!"

A dozen or more emails back and forth about the Case Study, the BBC TV interview and The Times article took its toll on my health. It was intrusive and stressful because I was too ill to handle it all and felt under pressure at having to respond right away and explain, in writing again, that I am too ill to even receive my own callers and visitors nevermind newspaper and TV interviews, film crews coming round here, phone arrangements, appointments making me more ill, and having to answer more questions.

That week, even after I had put in the time and effort to provide whatever was necessary to know in my blog of July 9, 2003 and in the Case Study for Meditainment's website, messages continued to ping into my email box re the journalist's urgent request for more details about my work and personal life.

My work on the Case Study alone involved another dozen or so emails, to and fro, explaining how I managed to sleep well but awake over activity causes restless and near sleepless nights....and that Dr Betty Dowsett, a leading ME specialist here in Britain, advised me to eat five times a day immediately followed by 30 minutes of rest - and how the specialist GP from my local NHS Chronic Fatigue Clinic recommended, in addition to Dr Dowsett's programme, I rest for five minutes after every 20 - 30 minutes of activity.

Given all that painstaking work to provide useful first hand information to help other sufferers, this is what journalist Damian Barr and The Times published about myself and the value of Meditainment, in Body & Soul supplement on Saturday October 18, 2003.

Damian Barr wrote: "But I don't sleep much.....A specialist GP from her local NHS Chronic Fatigue Clinic recommended resting for five minutes after every 30 minutes of activity". This is not true, I do manage to sleep well AND he omitted the most important and crucial piece of NHS medical advice. Not to mention his "hokey" review of Meditainment and the merits of meditation, and his question "Sounds like a cult thing?"

For readers who know nothing or very little about ME, this article leads one to think that if I could sleep more or better I wouldn't be so "tired". Like ME is all about being tired. What an insult to all severely affected ME patients. I am sick and tired of the media portraying this "living death" illness in such a dismissive way. They have great opportunities to help ME patients (and their carers) by raising awareness of this serious and widespread disease. Well written articles in influential newspapers, such as The Times, could help enormously towards changing the public's perception and help attract and encourage more urgent medical research. Thoughtless and carelessly written articles, such as this, only serve to spread the reporters own ignorance to a wider audience, thus perpetuating huge misunderstandings about this profoundly disabling illness from which most severely affected ME sufferers never recover, and some choose to take their own lives.

I've taken The Sunday Times for 30 years and would never have believed such shabby and cavalier reporting could end up on their pages. The Times did no favours to their readers - Meditainment - to myself or the millions of patients around the world. Who did the article benefit? And who really cares?

The journalist, Damian Leighton Barr, states here that he lives high up in a big house by the sea in Brighton where he writes for The Independent, The Times and The Guardian raising funds to feed his two hamsters and his boyfriend. He concludes his report on Mr and Mrs Michael Portillo, entitled Sir! Did You Swallow?, with the words "...even in this day and age, there can still be such a thing as bad publicity". My point exactly.

I cannot afford to rant or vent or get stressed. It'll cost me too dearly. Throat is already sore just writing this post. Just want to publish this for the record today, so that when I have a better day I can take it further. Maybe I'll just email the Editor of The Times my blog URL and publish the response here.

# posted by Ingrid J. Jones @ 10/22/2003
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