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General Discussion / Today's blog: Not Just M.E. Girl
« Last post by KarenIronside on Today at 09:10:06 AM »
Today's blog: Not Just M.E. Girl

Let me fill in the blanks about who I am!
Just reached 600 signatures this morning.   :D

Anyone who has so far missed this, please do support our action.  We hope to present this to the Health  Minister towards the end of May after ME Awareness week. 


 12 April 2014 Last updated at 01:01 ET
 Hepatitis C: New drug treatment 'is a breakthrough'

After 12 weeks, 191 of 208 patients no longer had hepatitis C after being given an oral treatment

The study is a "major breakthrough" and marks a "turning point" in hepatitis C treatment, said experts.

More than 200,000 people are infected with hepatitis in the UK, and deaths from the infection have increased threefold since 1996.

Only 3% of patients in the UK currently opt for the existing treatment, which only works half of the time.

 'Excited for patients'

We suddenly have the opportunity to eliminate the virus in the UK - even without a vaccine
Charles Gore Hepatitis C Trust       

Hepatitis C is a virus that can infect and damage the liver.

It is passed on by the blood, or bodily fluids of an infected person, and can be transferred through tattoo needles, or people taking drugs and sharing needles.

Researchers at the University of Texas Health Science Centre tested the new oral drug in 380 patients at 78 centres in Spain, Germany, England and the US in 2013.

Two studies were carried out, one in patients for 12 weeks, and another, for 24 weeks.
The patients had liver cirrhosis, indicating an advanced form of the virus.

After 12 weeks, 191 of 208 patients no longer had hepatitis C, which increased to 165 of 172 patients, or 96%, after 24 weeks.

Lead researcher, Dr Fred Poordad said: "It is fantastic. I am so excited for the patients. There is finally hope for their future."

He said the drug worked by targeting the protein that makes hepatitis C and stopping it from replicating.

"Eventually the virus is extinguished," he said.

   It remains to evidence the benefit of the treatment in patients with advanced liver disease
Gkikas Magiorkinis University of Oxford       

The study worked for patients with genotype 1 infections, which account for 45% of infections in the UK. The other 45% are a genotype 3. Genotype 2 is less common.

The side affects were fatigue, headaches and nausea.

 Political will needed Current treatment for hepatitis C can include a year's worth of injections and involve side-effects such as depression, tiredness and feeling sick. It also is not safe for many people with cirrhosis, said Dr Poordad.

Gkikas Magiorkinis, consultant physician in medical virology at the University of Oxford, said treating the patients with cirrhosis was a "major breakthrough".

Concerns over the high toxicity and low efficiency of current treatment had meant it was not widely been applied.

"It remains to evidence the benefit of the treatment in patients with advanced liver disease," Mr Magiorkinis said.

However the study did not show if the probability of cancer dropped in the long term, if cirrhosis was reversed or progression to total liver failure slowed.

Whether or not the treatment prevented further transmission in the public was also yet to be seen, he added.

Charles Gore, chief executive at the Hepatitis C Trust, said: "This is a turning point. I think it is incredibly exciting. We suddenly have the opportunity to eliminate the virus in the UK - even without a vaccine."

Mr Gore said whether or not the disease could be eliminated would be down to political will, which he said was lacking in the UK.

He said although the study involved genotype 1, treatments for genotypes 2 and 3 were "close behind", he said.

Mr Gore said treatment could reach the UK later this year.

A new hepatitis C treatment has cured 90% of patients
ScienceAlert Staff         
Tuesday, 15 April 2014
In a 12-week trial, a new drug for hepatitis C has reportedly cured 191 out of 208 patients infected with the virus.

The huge breakthrough was made by researchers at the University of Texas Health Science Centre, who tested the new oral drug in 380 patients across Spain, Germany, England and the US last year.
Two studies were carried out, one for 12 weeks and one for 24 weeks.
After 12 weeks, 191 of 208 patients no longer had hepatitis C, and this increased to 165 out of 172 patients, or 96 percent, after 24 weeks.
All patients had genotype 1 hepatitis C infections as well as liver cirrhosis, which indicates the virus was advanced.
The drug works by targeting the protein that makes hepatitis C and stopping it from replicating, lead researcher Dr Fred Poordad told BBC. "Eventually the virus is extinguished," he said.

And she references this pubmed paper: Origin and rapid evolution of a novel murine erythroleukemia virus of the spleen focus-forming virus family.

"Our results suggest that SFFV-related viruses can form in mice by recombination of retroviruses with genomic and helper virus sequences and that these novel viruses then evolve to become increasingly pathogenic."

Wednesday, April 9, 2014   

Dr. C is frustrated....understandably


Goooo, Dr. C.!!!!!!   Cheering all your efforts, dedication and hard work!!!

Wednesday, April 9, 2014   

Dr. C is frustrated....understandably

I had my latest appointment with Dr. C yesterday.  As usual, we spent more time talking about the landscape of ME/CFS research than we did about my own health, which is fine by me.  The man is fascinating.
 As usual, everything below is paraphrased, including quotes, and it is always possible I misunderstood something. 



CFS Treatment Guide: Chronic Fatigue Syndrome after Swine Flu Vaccination


Two case studies concerning ME/CFS recently appeared in the British Medical Journal. They are of interest because in both of these cases, CFS (as stated by the authors) was triggered by a vaccine.

General Discussion / Charlie means business, 4/15/2014
« Last post by Patricia/Wildaisy on Today at 12:41:22 AM »

Charlie means business

Sitting at home with her feet up on a chair and watching the kids playing in the garden, Charlie Reilly talks business.

It’s not the sort of relaxed scene in which you’d expect to find an award-winning company owner while her mind’s on work.

But this, Charlie explains, is what suits her and helps her cope with the challenges of health and home.

For the Gosport mum-of-three, these are considerable. Charlie is using the chair as support for her legs because she suffers from fibromyalgia – a long-term condition that causes muscle stiffness and pain all over the body.

‘This eases the pressure on the joints,’ she explains before revealing that sometimes she’ll sit like this in important meetings.

The 32-year-old businesswoman, mum and student also suffers from ME, or chronic fatigue syndrome as it is often known.

It means that some days she finds it hard to get out of bed – but because her work offers flexibility of location and hours, Charlie copes.

And the founder of The Reilly Enterprise Ltd never forgets that family is her priority.
Her son Ryan, 12, has a development disorder with traits of autism, and is currently being educated at home.

Add to this the fact that Charlie is studying for a degree, and it seems incredible that she should have recently landed a business award.

The hard-working head of a party entertainment company was presented with first prize at the Networking Mummies Small Business of the Year awards at a ceremony in Birmingham.

Accompanied by husband John, who also works hard on the business as well as being employed at a nursery, Charlie was thrilled to receive  the honour.

The Reilly Enterprise was awarded because of its work in the community, which includes a social enterprise about to be launched.

Charlie hit upon the idea of Square Pegs Round Holes because of her own and Ryan’s issues with work and health.

The project’s aim is to help young people from financially disadvantaged backgrounds and youngsters with disabilities to increase their employability skills and find work.

The scheme will offer workshops and Charlie hopes to talk to businesses about employing those who have plenty to offer but might not fit into an office environment without adaptations and support.

Having faced considerable challenges, she’s a great believer that people with health issues can work with the right degree of flexibility.

Because Charlie runs her own business, she can do something even when the ME – which results in long bouts of exhaustion – takes its toll.

‘There have been times when I have worked from my bed,’ she says. ‘I have a sea view, so if it gets too much I can have time to relax.’

To ease the pain associated with fibromyalgia, Charlie has a desk that changes heights and has no problem telling clients that she needs to pur her feet up.

‘But imagine if you’re an employee in a board meeting. It’s not so easy to look after yourself.’
A big inspiration for the project, which has attracted funding from the University of Portsmouth and social enterprise charity UnLtd, is Ryan.

He has neurodevelopmental disorder which affects emotion, learning ability, self control and memory.

While Ryan finds it difficult to learn, he’s a bright boy.

In fact his skills with technology have produced adverts for the business and he also worked on a video for Charlie to use to attract funds.

‘I want him and others to have aspirations and goals.

‘Just because people might not fit into a traditional work environment, doesn’t mean their skills can’t be used,’

Charlie gave up a successful management career to give Ryan more support and then set up the core business – providing life-size foam characters to appear at children’s parties – to earn money on the side.

She also launched Sweetheart Sweet Carts, an event-dressing service.

She and John began recruiting self-employed party entertainers and giving training and employment advice to young people.

And they also provide mascots for charity events.

It was their community work that finally convinced Charlie to set up the new project.
She knows she can make it work  with a lot of help from John and their team, and a few adaptations to make life easier.

‘I’m a firm believer that you can find ways to do things and be useful.

‘People need to have a sense of purpose even if they face many difficulties.’

For information, visit

It is estimated that ME, or chronic fatigue syndrome as it is commonly called, affects some 250,000 people in Britain.

The predominant symptom is usually severe fatigue and malaise following mental or physical activity.

The full extent of the exhaustion often becomes apparent 24 to 48 hours after the activity.
Other symptoms can include clumsiness, muscle pain, problems with memory and difficulties with control of the nervous system resulting in sweating episodes, fainting and palpitations.
Despite the fact that the Department of Health accepts ME as a genuine medical condition, there is misunderstanding and diagnosis can be difficult.

Symptoms are similar to other conditions and there are no examination findings which can confirm diagnosis.

The ME Association funds and supports research and offers support and information. Visit or call 0844 576 5326.

Ballerina from Stanstead Abbotts sets sight on professional dancing career after battling chronic fatigue syndrome

A YOUNG dancer from Stanstead Abbotts has overcome illness to gain a coveted place at a top Scottish ballet training school.

Ruth Bryan, 19, is pursuing her dream of becoming a professional ballet dancer and will be starting a three-year training course at Ballet West, which will lead to a BA (Hons) in dance.
The former Chauncy sixth form student in Ware was forced to stop doing ballet in her early teens as a result of chronic fatigue syndrome, which she was diagnosed with when she was around 11 years old.

The condition not only interfered with her ballet, which she had done since she was a toddler, but also got in the way of her education.

Ruth told the Mercury that getting back into dancing was the best thing for her.

She said: “Ballet is so graceful and flowing, I like the way the movements melt into one and other, when I’m dancing I feel like I’m flying, it’s quite fun.”

Her mother, Rachel Melrose, had to take Ruth out of Presdales in Ware when she was in Year 10.

Ruth then completed her GCSEs at home.

Mrs Melrose said: “Ruth spent around a year out of school and worked incredibly hard to get over the condition.

“It can happen to people without warning.

“I’m very proud of her, as is her step dad.”

At the age of 15, Ruth took up ballet again as a way of improving her fitness.

Much of her ballet training was done at the Carter School of Dance, based at The Sele School in Hertford.

Its director, Caroline Crowley, is immensely proud of Ruth’s achievement.

She said: “It is a demonstration of her dedication and complete hard work.

“She is following her dream and I wish her every success at Ballet West, it is a fantastic institution and the qualification she can get from them is great for aspiring professional dancers.”

Mrs Crowley said a career as a professional dancer is something she would only encourage the very best of her students to pursue.

According to her, Ruth had always demonstrated the drive needed to make the transition from amateur to professional dancing.

For more information on the Carter School of Dance, visit
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