Tuesday 24 June 2014

Do You Have IBD Fatigue?

The first ever fatigue rating scale for IBD!

In-depth qualitative interviews with our study volunteers confirmed that fatigue was a big issue that had a severe impact on many areas of life.  They also confirmed a need for a way of measuring fatigue to enable people with IBD to discuss fatigue with their health care professionals and test interventions and treatment.

Fatigue scales had been used in many other conditions, to help patients and doctors measure levels of fatigue, however there was no scale that had been developed specifically for IBD.
Our fatigue scale –which can be accessed and scored below will enable people living with IBD to:
  • self-assess their fatigue and the impact is has on their lives
  • more easily raise their fatigue symptoms with healthcare professionals
  • assess whether changes in lifestyle are having any impact on fatigue levels
  • discuss their fatigue with family, friends and employers

Monday 23 June 2014

Apology From Dr. Mitton Over the Junk Food Drama...

In case you were on Mars last week and didn't see the controversial reports on TV and in the papers about Junk Food and Crohn's Disease...

See the original interview here and read up on our interviewee's experiences here.

Following all your comments, complaints and our efforts behind the scenes, calling journalists and getting edits, we were pleased to read this from Dr. Sally Mitton, whose comments about junk food causing Crohn's Disease were at the centre of the debate.

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Prof Chris Norton

And that is where we will draw the line on this. It was unfortunate that the real point of the appearance of our CEO and our member Rachel Flint was to talk about the Fatigue Project that is the focus of our media campaign this year. SO that's what we'll be talking about from now on!

New Crohn's and Colitis UK Study Offers Fatigue Breakthrough

As part of a 4 year research project into the causes and symptoms of chronic fatigue for the estimated 260,000 people living with Inflammatory Bowel Disease (IBD), medical research and patient support charity Crohn’s and Colitis UK - with the support from Big Lottery - is addressing the ‘most over-reported and under-managed’ problem for people living with these debilitating medical conditions – fatigue.

From today, people with Crohn’s and Colitis will be able to measure the severity and impact of their fatigue objectively using the newly researched and validated IBD Fatigue Scale which is available on www.fatigueinIBD.co.uk
This new development is the product of the charity’s successful scientific partnership with researchers at King’s College London, University College London and the Addenbrookes’ NHS Trust.
Welcoming the launch of the Fatigue Rating Scale, Professor Christine Norton, of King’s College London, and principal investigator for the Fatigue project said:
sam faiers fatigue“Until now, patients with severe IBD Fatigue have struggled to overcome this debilitating, invisible symptom. We know that three quarters of people experience fatigue during a disease flare-up, but we also know that 40-48% of patients in remission continue to suffer badly with fatigue.
“The IBD Fatigue Scale will allow patients to discuss this under-recognised symptom with their healthcare professionals bringing them together to address and improve the treatment of this serious symptom. We hope that the new IBD Fatigue Scale will become fully integrated as standard good practice in all UK hospitals.”
For the 10,000 newly diagnosed young people with Crohn’s and Colitis every year, fatigue is a deeply debilitating symptom and Crohn’s and Colitis UK is delighted to welcome the support of Sam Faiers. Sam is helping the charity to fight IBD fatigue by improving awareness of this ‘hidden symptom’.
Sam explains:
“The exhaustion I experienced was horrible, life limiting and a typically untreated symptom for people with Crohn’s or Colitis. This new Fatigue Scale is a break-through and will make talking to my doctors much, much easier. This really is great news for everyone with IBD.”
Helen Terry, Director of Patient Support and Information at Crohn’s and Colitis UK, sums up:
“Some doctors and nurses are unaware of how much fatigue can affect people with IBD and many do not ask about it during an appointment. We are asking everyone with IBD to make sure that they have told their healthcare professionals about this under recognised symptom and suggest that they use this IBD Fatigue Scale to enable them to formally discuss their fatigue with their medical teams. We hope that the Fatigue Scale will greatly improve the quality of discussions between patients and their doctors.”

Fatigue in IBD

People with Crohn’s and Colitis can now measure the severity and impact of their fatigue using a newly researched and validated IBD Fatigue Scale.

sam faiers fatigueThe IBD Fatigue Scale can be found on our new Fatigue in IBD microsite, along with our research findings from the 4-year project:
The scale is the product of our charity’s successful scientific partnership with researchers at King’s College London, University College London and the Addenbrookes’ NHS Trust.
For the 10,000 newly diagnosed young people with Crohn’s and Colitis every year, fatigue is a deeply debilitating symptom and Crohn’s and Colitis UK is delighted to welcome the support of Sam Faiers. Sam is helping the charity to fight IBD fatigue by improving awareness of this ‘hidden symptom’.
“The exhaustion I experienced was horrible, life limiting and a typically untreated symptom for people with Crohn’s or Colitis. This new Fatigue Scale is a breakthrough and will make talking to my doctors much, much easier. This really is great news for everyone with IBD.”
We are still looking for media volunteers to speak to the press in the upcoming weeks about their experiences with IBD Fatigue. If that sounds like something you'd like to get involved in, please email media@crohnsandcolitisuk.org.uk. So follow in Sam's footsteps and speak out about this often invisible and little understood symptom of Inflammatory Bowel Disease.

Rachel Flint's Experience in the Junk Food Debate...

Crohn's and Colitis UK member Rachel Flint appeared on BBC Breakfast along with the charity's CEO David Barker, where they saw a report by BBC Radio's Newsbeat programme for the first time. They were surprised at the content of the report, in which a doctor linked junk food to developing Crohn's Disease.

On her popular blog Adventures of the Bag Lady, Rachel explains how the experience, and the aftermath affected her:

Within seconds of saying goodbye to [BBC Breakfast's] Louise and Bill I was inundated with texts, tweets and facebook messages. Me and the CEO of Crohn’s and Colitis UK David Barker stood in the green room staring at our phones as the messages flooded in from all over the country. Almost everyone was congratulating us on standing our ground, raising awareness for sufferers and talking about the illness in a “un-glossed” light.

Me and CEO of Crohn's and Colitis UK David Barker
Rachel and Crohn's and Colitis UK CEO David Barker
But every single second my phone was buzzing with outrage over the junk food comments aired during the programme; which unfortunately myself and David were unprepared for as we sat down to face around 1.5M viewers on national TV.

As a journalist I’m used to being on the other side of the notebook/microphone, so being interviewed was a strange experience. I had no idea what they were going to ask me; so I suppose you could say I got a taste of my own medicine. But working in the media, I also know how the news works. Media outlets saw the new quote from Dr Sally Mitton’s interview on the Newsbeat segment and leapt on them. It was controversial and, “well news” (it was a new angle to the Crohn’s story) so the media ran with it.

Either through editing in the studio or Dr Mitton simply coming out with what she believed was a true, but damning and unfounded comment about junk food and Crohn’s; she told the world that sufferers were to blame for a lifetime of pain, ulceration and hospitalization. Which is out-of-order and, in my opinion, totally untrue.
To think that those with IBD cause their condition by eating burgers doesn’t ring true with me – you only have to say SIR STEVE REDGRAVE and that theory is halted entirely! 
It didn’t end up being a bad day for Crohn’s and Colitis or those with stomas. In the end the controversial comment sent IBD spiralling to the top of the nation’s minds. Crohn’s was trending on twitter; advocates were posting informative blogs; people were sharing their experiences; and national organisations sent clarification statements to the national press to halt the misinformation quotes. I know that celebrity Carrie Grant sent a letter (see below) to the doctor in question advising her to get media training, and hundreds if not thousands complained to the BBC! 
And if you want to know; despite everything that happened I really enjoyed being on the BBC. Yes, it was tough, scary and nerve-wracking. I only found out the night before and had to get up at 5.30am! But the crew were lovely and seemed genuinely interested in me and my condition. The toilets were not the best! But Louise, Bill and the whole crew really did everything they could to put us at ease. And it was a pleasure to meet David – who appears to be a great spokesperson for Crohn’s and Colitis UK.

Be sure to read the whole story over at Rachel's Blog

Here at Crohn's and Colitis UK, we worked tirelessly throughout the day and beyond to rectify this potentially damaging statement that the media picked up on. Read more about that here.

Junk Food and IBD... The Power of Social Media

A report for BBC Radio’s Newsbeat programme linking eating junk food with developing Crohn’s Disease has been described as ‘distressing’ and not backed up by hard evidence. We explain how the charity's members reacted and what we did behind the scenes to remedy the situation. You can also read a write up by Rachel Flint, who appeared in the interview on BBC's Breakfast programme here.

If you missed it, here is the original proramme:

The broadcast last week was then followed up by articles and broadcasts in the national media, even though there has been no definitive scientific link made to any particular diet or food additive as being a sole cause of the disease.
On our Facebook page and Twitter, hundreds of Crohn's and Colitis UK members and supporters voiced their concern and upset over the damage caused by the report.
The Charity was quick to respond to all the inaccuracies.
We ensured these misleading statements were corrected in the Daily Telegraph and Daily Mail, arranged for Professor Chris Probert from our Clinical Advisers team to appear on BBC News 24, ensured there was a change to the BBC website report, and took part in numerous regional radio interviews in addition to Radio 2’s Jeremy Vine show.
Professor Probert on BBC News 24:

A jointly-written letter published in The Times by David Barker, Chief Executive of Crohn’s and Colitis UK, and Dr Ian Forgacs, President of the British Society of Gastroenterology, explained why headlines such as the newspaper’s “Junk food diet to blame as number of youngsters with Crohn's disease soars” were simply wrong.
This statement is not supported either by scientific data or mainstream medical opinion,” says the letter.
The implication that thousands of young people with Crohn's Disease have somehow brought that exceptionally unpleasant condition on themselves is proving most distressing to them and their families. It is true that Crohn's disease is becoming more common which is only serving to make more urgent the already considerable research effort. The cause remains unknown yet it is plausible that environmental factors play a part and a number of theories have been proposed.
The letter goes on to say that while eating junk food ‘may not be wise’, there is no data to support the view that eating crisps, burgers, and pizzas predisposes anybody to developing Crohn's Disease.

To tell young people that they may have played a part in giving themselves an exceptionally unpleasant, potentially lifelong and quite incurable condition such as Crohn's Disease needs to be backed by hard evidence and that evidence is just not there,” it concludes.
We will continue to work hard on this issue and will update members in the next issue of NEWS. For more information on this subject, our booklet Food and IBD is available to download from our website or by post.

Thursday 29 May 2014

We Still Need Media Volunteers

Do you find living with IBD exhausting?... Would you like to share your story?

Crohn’s and Colitis UK is putting out a call for lots of member and supporter (recent) short stories (all ages) about how the symptom of fatigue/extreme tiredness has had a negative impact upon an individual’s ability to enjoy a normal social life, undertake study or stay in employment.
We will be looking to place some of these stories into regional press all around the UK during the Spring 2014, to raise awareness of Fatigue.fatigue-dad.png (Preview)70% of young people in 2007 when surveyed by the charity stated "Fatigue” as their most noticeable symptom. As a result we won £500,000 from the Big Lottery Fund to investigate Fatigue further.
This year, our Me and IBD survey of over 1,000 young people aged 16 – 29 indicated an even higher level of concern – even when not having a flare - 76% found it more of a problem than extreme pain or diarrhoea.
Our Fatigue project findings are due to be released in June 2014.

This is for any age, so feel free to share with others.
Please email media@crohnsandcolitis.org.uk for a Fatigue Media Volunteer form, or with any other queries.