EUROPEAN NETWORK OF FIBROMYALGIA ASSOCIATIONS
From the desk of Jeanne Hambleton
Members of the European Parliament (MEPs) adopt written declaration 69/2008 on fibromyalgia initiated by five deputies and the European Network of Fibromyalgia Associations (ENFA).
Brussels (16.12.2008) – Written Declaration 69/2008 on fibromyalgia has been a success in the European Parliament by finding the necessary quorum of signatories of 393 deputies giving their support. The Written Declaration was initiated by five key MEPs active on health at the European Parliament: Mr. Adamou, Ms. Brepoels, Ms. Dičkuté, Mr. Popa and Ms. Sinnott. These MEPs decided to launch the declaration during the celebratory meeting of the 1st European Fibromyalgia Awareness Day in May 2008, organized by ENFA
The Written Declaration is calling on the European Union to recognize fibromyalgia in Europe as a disease, as WHO did in 1992. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87% of total prevalence).
Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.
Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations
Thus, the European Parliament is calling through this declaration, for the European Commission and the Council, to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia.
Educating healthcare professionals, patients and the public to promote better understanding and management of Fibromyalgia will benefit patients, healthcare providers and the society.
A Written Declaration is a text of up to 200 words on a matter falling within the European Union’s sphere of activities. MEPs can use them in order to launch or relaunch a debate on a subject that comes within the EU’s remit. At the end of the lapsing date (3 months after its launch on 1 September for the declaration 69/2008) the declaration is forwarded to the institutions named in the text, together with the names of the signatories.
Contact:
European Network of Fibromyalgia Associations (ENFA)
Mr. Robert Boelhouwer
President of ENFA
contact@enfa-europe.eu
http://www.enfa-europe.eu
About ENFA
ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.
FOOD FOR SKINNY KIDS – A STORY WHICH NEEDS TO CIRCULATE FOREVER
by Jeanne Hambleton © 2007
NFA Leader Against Pain – Advocate
Maybe I should mention that you just might need some kleenex tissues before you start this story but please read it anyway, if only in the spirit of Goodwill to All Children. The men are big enough to look after themselves.
As folks in the UK were getting ready this morning to do some Christmas shopping an email arrived on my desktop with a warning, which said, “This email needs to circulate forever.”
How could I pass up this invitation to inquire within? The email also stated, “This is a real eye opener. A real tear jerker No prerequisites (commitments). Simply, because everyone should be reminded.“
This was sent to me by a lady from Montevideo, Uruguay called Marta. Where the pictures, shown in the email, were taken, it does not say, but I am sure it conveys a worldwide message, especially within the African continent.
Picture 1. shows European students sat at computers working, with the caption, “Does studying annoy you?”
Picture 2. reveals children, possibly from Africa, without shoes, sat on a bench and drawing their lessons in the dirt with their fingers. The caption says, “ Not them!”
Picture 3. is a happy family picture of a father with his daughter enjoying a beef burger roll with the words, “Hate veggies?”
Picture 4. is a picture of a long line of native mothers and starved children, clothed, in rags and waiting in line with a bowl for some food handouts. This caption says, “They starve from hunger!”
Picture 5. reveals the back view of a jolly obese child having fun, with a caption which reads, “On a diet?”
Picture 6. gives a close-up of a painfully thin starved child with a tape measure around the child’s matchstick thin arm. The caption referring to diet says, “They die from it!” Or the lack of any kind of diet.
Picture 7. shows a baby being cuddled by a parent revealing the lovely cuddly cheeks of a child’s bottom. This reads, “Does your parent’s care tire you?”
Picture 8. shows a sibling cuddling a child with the last bone in the baby’s spine clearly visible as she rests in sister’s arms for comfort. This caption tells us these children have no parents to grow tired of. “They don’t have any!”
Picture 9. reveals youngsters sat at a games console and states, “Bored with the same game?”
Picture 10. Shows a young unclothed child playing in the dirt with a bit of stick, next to the human skull of someone who had probably died from starvation. The caption reads, “They have no option!”
Picture 11. shows a smart new trainer with a caption which reads, “Someone got you Adidas instead of Nike?”
Picture 12. pictures the feet of a child with half of a plastic bottle cut to make the sole of a pair of sandals. The picture clearly reveals the screw top of the plastic bottle on the footwear, which is tied onto the foot with rag. This caption states, “They only have one brand?” Maybe it is cola?????
Picture 13. is of a sweet little girl in clean pyjamas snuggled up in her cosy bed. This caption reads, “Aren’t you thankful for a bed to sleep in?”
Picture 14. The final contrast picture shows a child laying in the dirt, half covered with a piece of old rag, trying to sleep, with a caption that reads, “They’d wish not to wake up!”
The closing slide asks, “Are you still complaining? Observe around you and be thankful for all that you have in this transitory lifetime…. We are fortunate to have much more than what we need to be content. Let us try not to feed this endless cycle of consumerism and immortality in which this ‘modern and advanced’ society forgets and ignores the other two thirds of our brothers and sisters. Send this information without any obligation or expectation in receiving good luck. Don’t keep it! Send it and it won’t be in vain. Let us complain less and give more!”
I imagine you feel as I do. I work hard for my dollar and I do not believe in sharing my hard earned cash with large charities who have magnificent offices, managing directors, hundreds of paid staff and devote just a fraction of their donations to their ‘good’ works. You can call me the woman with the long pockets if you like, but I want to know my money is going where it will doing some good and helping those would really need it. How to be confident about that I am not sure? In true Scorpion fashion I hate to be misled or deceived.
Quite how we can help these starving children is the burning question. I have had masses of appeals for all sorts of charities drop on my doormat in recent weeks. At least these ends up in the local hospice waste paper recycling skip and help them a little along with our papers and magazines. I looked on the Internet at our UK BBC Children in Need but could not see children in a similar situation.
SAVE THE CHILDREN
The UK Save the Children organisation has produced a Christmas shopping catalogue, on line, so should you decide to buy Christmas gifts from them you are indirectly donating while shopping, just how much remains to be seen! Perhaps this might be more acceptable – buying and giving at the same time. It is easy to look at this site to see the work they are doing and possibly shop with them. Every Christmas I seem to receive more and more cards printed by charities and sent by to me by friends.
http://www.savethechildrenshop.co.uk/home
However I should mention that if you telephone their UK number – 0844 557 5425 – instead of ordering on line, it could cost you 40p a minute as you give your details and make your mind up. Some of that money will be going to the charity.
Our doctors’ surgery is using this 0844 prefix number and getting a rake off which is a bit vexing considering how much our GPs are reported to be earning – but that is another story.
No – I am not a sales rep for any charity – just a concerned parent. No, this is not a commercial for children’s charities – it is a wake up call.
The American Save the Children website also appears to have a programme for under privileged children in developing countries, who are suffering from hunger and poverty. It seems you can also purchase festive gifts from them indirectly helping the cause.
http://www.savethechildren.org/
What you decide to do is between you and your conscience. I would however like to leave you with these thoughts.
These pictures and words certainly do bring you down to earth especially when you consider the wastage by governments the world over. I am just sorry I could not reproduce the pictures but I am sure you know the kind of scenes I mean – you must have seen them on TV from time to time. Send me your email address with the request for these pictures if you would like them forwarding.
Just consider the money all of the worldwide governments squander… it is time someone added the total figure and gave us some home truths.
These starving children, if they live, may be our next generation – our future leaders. Do you think if they survive they could be future terrorists? I am sure they will have a grudge against the world – surely they will feel the world owes them a living. This is all very sad and really makes you think. Whatever happened to the innocence of childhood?
Just imagine what we spend on consumerism not to mention what we will spend on our own children this Christmas 2007. I wonder what our children would think if we put these pictures under the Christmas tree on Dec.25 instead of a new bike, a new game toy and all the other things children of our modern world expect to receive from their parents aka Father Christmas?
What would it be like if children all over the world went without just one toy from their festive gifts in aid of the starving and poverty stricken children. It would take a lot of organizing to gather in that money and it is a huge task but it could be done – all it needs is a good website supported by reliable well known people…. even if it took until Easter to collect the money – the children would still be starving.
Where are you Bob Geldorf? Can you help us with this? Does someone know his email address? My mind is boggling at the power of the people…… How about Skinny Kids for a campaign title – that rather sums it up!
Just a thought – maybe if that £5 we would be spending on a nonsense stocking gift for someone who has everything, was replaced with a warm note telling them Christmas is for children – starving children in particular – and they would be receiving his gift money with a tax gift aid. Sorry but this has been sent to starving “Skinny Kids” who have nothing.
I would hope we would get a really warm hug for this initiative. This friend really did not need an air freshener toy for his car or a key ring. If we did not get a big hug that receiver is a Christmas Meanie…. Take it from me. We will cross him off our Christmas list in future – so there.
Sorry to be a party pooper – but someone has to do it. I will make up for it and send you some happier stories in the near future.
Take care. Jeanne.
Satellites witness lowest Arctic ice coverage in history
14 September 2007
The area covered by sea ice in the Arctic has shrunk to its lowest level this week since satellite measurements began nearly 30 years ago, opening up the Northwest Passage – a long-sought short cut between Europe and Asia that has been historically impassable.
2007 Envisat mosaic of Arctic Ocean
In the mosaic image above, created from nearly 200 images acquired in early September 2007 by the Advanced Synthetic Aperture Radar (ASAR) instrument aboard ESA’s Envisat satellite, the dark gray colour represents the ice-free areas while green represents areas with sea ice.
Leif Toudal Pedersen from the Danish National Space Centre said: “We have seen the ice-covered area drop to just around 3 million sq km which is about 1 million sq km less than the previous minima of 2005 and 2006. There has been a reduction of the ice cover over the last 10 years of about 100 000 sq km per year on average, so a drop of 1 million sq km in just one year is extreme.
“The strong reduction in just one year certainly raises flags that the ice (in summer) may disappear much sooner than expected and that we urgently need to understand better the processes involved.”
Arctic sea ice naturally extends its surface coverage each northern winter and recedes each northern summer, but the rate of overall loss since 1978 when satellite records began has accelerated.
Mosaics of Arctic Ocean for 2005, 2006, 2007
The most direct route of the Northwest Passage (highlighted in the top mosaic by an orange line) across northern Canada is shown fully navigable, while the Northeast Passage (blue line) along the Siberian coast remains only partially blocked. To date, the Northwest Passage has been predicted to remain closed even during reduced ice cover by multi-year ice pack – sea ice that survives one or more summers. However, according to Pedersen, this year’s extreme event has shown the passage may well open sooner than expected.
The previous record low was in 2005 when the Arctic area covered by sea ice was just 4 million sq km. Even then, the most direct Northwest Passage did not fully open.
A 2007 ice-free portion of the Northwest Passage
The Polar Regions are very sensitive indicators of climate change. The UN’s Intergovernmental Panel on Climate Change showed these regions are highly vulnerable to rising temperatures and predicted the Arctic would be virtually ice free by the summer of 2070. Still other scientists predict it could become ice free as early as 2040 due to rising temperatures and sea ice decline.
Because sea ice has a bright surface, the majority of solar energy that hits it is reflected back into space. When sea ice melts, the dark-coloured ocean surface is exposed. Solar energy is then absorbed rather than reflected, so the oceans get warmer and temperatures rise, making it difficult for new ice to form.
The Arctic is one of Earth’s most inaccessible areas, so obtaining measurements of sea ice was difficult before the advent of satellites. For more than 20 years, ESA has been providing satellite data to the cryosphere communities. Currently, ESA is contributing to the International Polar Year (IPY) – a large worldwide science programme focused on the Arctic and Antarctic.
Since 2006, ESA has supported Polar View, a satellite remote-sensing programme funded through the Earthwatch GMES Service Element (GSE) that focuses on the Arctic and the Antarctic.
In 2009, ESA will make another significant contribution to cryosphere research with the launch of CryoSat-2. The observations made over the three-year lifetime of the mission will provide conclusive evidence on the rates at which ice cover is diminishing.
Kenyan malaria success strengthens call for free insecticide-treated nets for all
Experts have today called for international agencies to provide insecticide-treated bed nets for all children in Africa as the most equitable way of tackling malaria. Their call is supported by new research co-funded by the Wellcome Trust showing how successful a scheme run by the Kenyan government has been at distributing the nets.
Over a million children die from malaria in Africa each year. Scientists have known for over 15 years that sleeping under a mosquito net treated with insecticide can halve the number of episodes of malaria and save lives. However, successful and equitable distribution of the nets has been difficult – by the end of 2004, only 7% of children in rural Kenya were reported to sleeping under the nets and only 3% among the poorest sectors of these communities.
“Even when the price of a treated net is heavily subsidised and made more accessible through clinics, parents have to choose between school fees and food or a net,” explains Professor Bob Snow from the Kenya Medical Research Institute–Wellcome Trust (KEMRI-WT) Research Programme in Kenya, who led the research. “The result is that few children are protected. Those who can afford to protect their children tend to benefit most, but not those who can’t.”
In 2006 the Kenyan government initiated a programme to provide 3.4 million treated nets free to as many young children as possible in only two weeks. The nets were distributed at clinics, schools, vaccination points and by Ministry of Health staff walking from house-to-house . In this short period of time, coverage rose to two-thirds of all children sleeping under a treated net, with no difference between children from rich or poor homes. The results of the study to evaluate the initiative are published today in the open access journal PLoS Medicine.
However, despite the success of the Kenyan government’s programme, Dr Abdisalan Mohamed Noor, lead author of the study, warns against complacency.
“We’ve shown what can be achieved with the right strategy, but one in three children are still unprotected, and every year 1.5 million children are born in Kenya who require new treated nets,” says Dr Noor from KEMRI-WT and the University of Oxford. “The momentum started in 2006 must continue and not be seen as a one off success.”
The researchers believe that the findings should prompt international aid agencies to revisit their distribution policies to make the nets more widely accessible.
“For a decade now, we have been asking the international agencies to recognise the importance of treated nets in child survival programmes,” says Professor Snow. “We would never expect countries or African families to pay for measles vaccination. Why then ask them to pay for an intervention that saves more lives in Africa each year””
Contact: Craig Brierley
c.brierley@wellcome.ac.uk
44-207-611-7329
Wellcome Trust
New study highlights link between unemployment and hospital trauma admissions
Press Releases
Heidelberg, 8 August 2007
Unemployment cuts
Socioeconomic status, and unemployment rates in particular, predict both the type of trauma seen in emergency rooms and the population groups more likely to be victims of trauma, according to Atul Madan (1) from the University of Tennessee Health Science Center and his team. Their findings have just been published online in Springer’s World Journal of Surgery.
The researchers looked at the link between unemployment rates and the types of trauma admissions in New Orleans over six years. Unemployment rates were obtained from the Bureau of Labor Statistics. The trauma registry of the Medical Center of Louisiana at New Orleans (Charity Hospital) provided data on the trauma emergency room admissions, including patient demographics.
Between January 1994 and November 1999, there were over 24,000 trauma admissions. During that period, the higher the unemployment rate, the higher the number of admissions for penetrating trauma – injuries that occur primarily by an object piercing the skin or entering a tissue of the body, such as bullets and knives.
The lower the unemployment rates, the higher the number of admissions for blunt trauma – physical trauma caused to a body part, either by impact, injury of physical attack which can result in contusions, abrasions, lacerations and bone fractures. In this instance, the majority of blunt trauma was the result of motor vehicle collisions. The authors suggest that a possible explanation for this surprising finding could be the fact that with higher incomes, more travel is likely, which in turn increases the likelihood of motor vehicle collisions. Alternatively, more tourism to the area may have reduced unemployment but caused more road accidents.
The study also shows that as the socioeconomic status, measured here by unemployment rates, of the community changes, so do the demographics and mortality rates of the trauma population. There were more male patients, African American patients and deaths at times of high unemployment. These results suggest that during times of economic hardship, certain population groups are at higher risk of life-threatening injuries.
The authors recommend that “injury prevention efforts targeted at economically disadvantaged populations and high-risk groups should be stressed when designing community trauma outreach programs, especially during times of economic hardships.”
Reference
(1) Madan A et al (2007). Unemployment rates and trauma admissions. World Journal of Surgery (DOI 10.1007/s00268-007-9190-4)
Contact:
Renate Bayaz
tel +49-6221-487-8531
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