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Please support a new project “Art 4 XMRV” by buying Greeting Cards, Matted Prints, Laminated Prints, Mounted Prints, Canvas Prints, Framed Prints and Posters. The images are donated by artists who have been affected by ME/CFS.

Art 4 XMRV is a collaboration between artists who have all been impacted, directly or indirectly, by Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis (CFS/ME). Leading healthcare professionals have stated that symptoms can often be more severe than late stage AIDS, Multiple Sclerosis and Cancer. This illness is a great deal more than ‘feeling tired’.

In October 2009, the Whittemore Peterson Institute in Reno discovered, thanks to their groundbreaking research, that up to 90% of all people with CFS/ME and up to 7% of the healthy population were infected with a recently identified retrovirus called XMRV. XMRV has also been linked to Autism and Prostate Cancer.

Once a retrovirus infects a person it becomes part of that person’s DNA and stays with them permanently. HIV is the most widely-known example of a retrovirus. It is estimated that over 17 million people worldwide currently suffer from CFS/ME and they are all looking to the Whittemore Peterson Institute for answers. The sad truth is that the WPI are not being supported by Government finance. Public funding is therefore desperately needed for further research and clinical trials.

Art 4 XMRV is an attempt to help raise money for the cause. 100% of all money earned through sales will be donated to the Whittemore Peterson Institute.

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Where did the year go (I have no idea!) and what has happened?

Well, last year I started to raise money as part of the Just Four Quid campaign. I set up two JustGiving pages (see them here and here) and over the year i have raised £864.00 shared between ME Research UK and The Ramsay Research Fund. With the gift aid added this comes to a massive £1003.62!!  Not bad for a year’s work (with no marathons/bungee jumps undertaken, for obvious reasons) and double what i was aiming for (and I never thought i would even reach those targets). I am so grateful to everyone who has donated to my pages and I am sure that that substantial amount will really help the charities with their work.

The Just Four Quid campaign itself has raised £12,685 at the time of writing, which is way short of the target of a £million in the year, but certainly better than nothing. I wonder how many people it took to reach this target, seeing as if everyone of the estimated 250,000 people in the UK with ME/CFS gave £4 we would have reached the target. I assume it is a very small number who have raised a LOT more than £4, like me. Not that i often did it in the suggested way of saving stuff then donating part of the saving – i simply am too ill to do it that way. I have barely been into a shop, never mind been well enough to shop around, even online. The recent theme of staying in cheap hotels/hostels also is completely unrealistic when you are so ill and there are certain comforts required (not just desired) to make the stay even remotely possible! I wonder if that is why the campaign has not been more of a success; the ones who want to raise money the most are like me, struggling to cope with everyday life rather than having time/energy for extra stuff like the things suggested by Just Four Quid. That said, you have to have a target and the money raised will make a real difference, even if not quite what was hoped for! I really admire “Zonko” for keeping up the momentum and enthusiasm for the project and for raising what has been raised. I certainly would not have considered doing it without her.

Personally it has helped raised awareness and caught the attention of people (friends and family) who had not really engaged with my illness or been able to understand it previously, which is a huge step forward. I feel more comfortable with them now. I also have a sense that i have DONE SOMETHING this year, more than just writing about my experiences and talking to others with these conditions; which is important in mutual support and information sharing, but perhaps not raising much awareness outside the group. Supporting actual research is certainly a step forward, and one so valuable when so little funding is available. The pages are still live and will be for a few weeks, so please feel free to make any last-minute donations if you get the urge!

I did a lot of hard work blogging for ME Awareness Day 2009 – this year I am keeping it fairly simple with a post or two about Fibromyalgia. Looking at last year’s posts, I think they are saying much of what I would want to say again, so feel free to revisit, or read for the first time if you did not see them last year. I was most interested to look at my symptoms picture and to note that I may even have developed a few more this year! That is no small feat (I like to focus on my achievements!) but also I notice that some things have become less of an issue for me (barely any tinnitus this year! yeah!). So, swings and roundabouts…

On Monday i went to a talk by Prof. Julia Newton, and i am working on blogging about how that went. In the meantime, here is an article about her research, which was published in The Journal:

The Journal

Standing up for fatigue

Julia Newton explains how new research is enabling us to have a greater understanding of chronic fatigue.

 

By Julia Newton (photograph attached), Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University

 

At this time of year many of us feel tired, partly due to the weather, just having celebrated the festive season, and having to contend with winter viruses. But for around 250,000 people in Britain, the symptoms are about more than just being tired a lot. This is how many people are estimated to suffer from chronic fatigue syndrome, CFS or ME/CFS.

 

Those who suffer from ME/CFS are so run down that it interferes with their lives and can make it hard to function at all. The severity varies, but typically people with ME/CFS say they have trouble staying on top of their responsibilities at home and on the job. Others are severely disabled and even bedridden. Furthermore, they’re not just dealing with extreme fatigue but with a wide range of other symptoms, including flu-like symptoms and chronic pain.

 

At Newcastle University, we are trying to find out more about the biological basis of ME/CFS. It is an illness which was, at one time, written off by many as being all in the  mind. But, the Department of Health now accepts ME/CFS as a genuine medical condition. However, diagnosis can still pose a problem because ME/CFS symptoms are similar to those present in a number of other medical conditions.

 

Fatigue is a distressing symptom that can affect people with a range of chronic diseases or occur in those with ME/CFS. Over two hundred medical publications have suggested that people suffering from fatigue have problems with their vascular system.  Our research is exploring what the biological basis of fatigue in ME/CFS is. We have shown that those with chronic fatigue also have problems with blood pressure regulation which in turn has important consequences for muscle, cardiac and brain function.

 

Our bodies’ autonomic nervous system is responsible for subconscious activities that occur in the body such as respiration, bladder and bowel function.  It is also integral to the maintenance of cardiovascular functions such as maintenance of heart rate and blood pressure.  Cases where the autonomic nervous system is not working properly, particularly in the case of low blood pressure, or hypotension, are also frequently found in people who have symptoms of fatigue. Our programme of research aims to understand the role of autonomic dysfunction in the step by step development of fatigue. We hope that this will help develop new interventions which will help target and treat these autonomic nervous system abnormalities. 

 

When this goes wrong, the consequences can be severe. So, for instance, one of the main consequences is being unable to stand for long without suffering ill effects. Some of the difficulties that CFS/ME patients face is standing, particularly standing still, without experiencing dizziness, altered vision, nausea and fatigue. Therefore we are hoping that a thorough assessment of autonomic nervous system function might help to identify a cure, which has proved so illusive up to now.

 

I have been investigating fatigue in people with the autoimmune liver disease primary biliary cirrhosis. I discovered that among this group of patients, abnormalities of the autonomic nervous system contributed to their fatigue and this in itself is related to low blood pressure and abnormalities of sleep. In addition, the fatigue in these patients was associated with excess mortality, which could also be linked with autonomic abnormalities. We have found in our research a clear and significant association between ME/CFS and the symptoms of autonomic dysfunction which we hope are bringing us closer to finding better ways to treat this debilitating illness.

 

Julia Newton is speaking at Café Culture’s event – Standing up for Fatigue: The Biological Basis of ME/CFS on Monday 19 January at the Urban Café, Dance City from 7 to 9pm. The event is free and open to all. For more details visit http://www.cafeculturenortheast.org.uk/

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