The 3rd International ME/CFS Conference organised by Invest in ME was held in London on 23rd May 2008. The Conference was chaired by Professor Malcolm Hooper, and presenters on the day where: Dr Leonard Jason, Centre for Community Research,Dr Jonathan Kerr, Clinical Research Fellow,Dr Martin Lerner, Infectious Disease Specialist
Dr Julia Newton, Senior Lecturer at the Institue of Cellular Medicine, Newcastle University. Dr John Chia, Infectious Disease Specialist, California, Dr Irving Spurr, GP, Dr Jean Monro, Medical Director of Breakspear Hospital and Dr Judy Mikovits, Research Director at the Whittemore Peterson.
The prevaling thoughts of the day were for the importance of using the correct case definition for diagnosing CFS/ME which should include post exertional malaise and sleep disorders. There were many discussions about the use of anti viral drugs for treatment of ME/CFS. There were also discussions about cardiological and blood pressure problems associated with ME/CFS, in particular myocarditis, hypotension, and POTS. There were also presentations about the role of enteroviruses infection in ME/CFS. The conference was extremely informative and highlights the fact that there is research out there that defines the biomedical markers of ME/CFS. However if your treating physician doesnt know about them or doesnt have the time to check out the research then they will continue to offer 2nd class treatments i.e. CBT or GET.
Monday, 26 May 2008
Thursday, 8 May 2008
Tuesday, 6 May 2008
UTV Life Programme - Dr Derek Enlander 6/5/08
Dr Derek Enlander was interviewed for this evenings UTV life programme.
Dr Enlander saw ME patients in Dublin and Belfast over the weekend. He is offering hope to sufferers and more importantly treatment which he says has had a 65% success rate. He treats ME as the very real physical illness that it is. This is not a cure but can provide relief to suferrers and hopefully a better quality of life.
If you missed this item you may be able to watch it online on the UTV site for a
while until it replaced by the next bulletin (e.g. it may be up from 18:00
to 18:30 or 18:00 to 19:00
http://www2.u.tv/utv_whatson/program...
www.youtube.com/watch?v=c9C26YIDJwE
Please leave comments about the item
Dr Enlander saw ME patients in Dublin and Belfast over the weekend. He is offering hope to sufferers and more importantly treatment which he says has had a 65% success rate. He treats ME as the very real physical illness that it is. This is not a cure but can provide relief to suferrers and hopefully a better quality of life.
If you missed this item you may be able to watch it online on the UTV site for a
while until it replaced by the next bulletin (e.g. it may be up from 18:00
to 18:30 or 18:00 to 19:00
http://www2.u.tv/utv_whatson/program...
www.youtube.com/watch?v=c9C26YIDJwE
Please leave comments about the item
Sunday, 4 May 2008
The Irish ME Association
Yesterday we in Galway, had a collection for research outside of a supermarket (we asked persmission and booked this about 2 months ago).
The Irish ME Association - for Information, Support and Research gets blue ribbon boxes and blue ribbons from BRAME in England. We use these then for the collection.
We did really well. We raised over 1470 Euro for one day (this was a rough count which needs to be recounted and bagged. We didn't count a lot of the smaller change, which could come to a few Euro more). This is about £1150 British Pounds.
We only had a small number of collectors in total across the day, 5 people in all (my parents, my brother and his girlfriend, and one person from our local group). So even with a small number a lot can be done. My parents did a morning shift and a later shift, as the collection was going really well and we wanted to do as well as we could.
We usually had two collectors at a time, though sometimes just one. Whatever way they were standing they we getting people coming in and going out of the shop. They still did well though when there was only one person on.
We had some large donations, one 50 Euro note, a few tenners, and quite a few fivers. Most of it was 2 and 1 Euro coins (though sometimes people give a few 1 Euro coins). We got almost no coppers (5 cent, 2 cent, and 1 cent coins). So people were giving quite a bit when they gave.
So we got 1470 Euro (approx £1150 Sterling) for collecting, starting at just after 10am to 7.15pm. It would be still worth doing even if we had managed to cover only a few hours.
We collected over 1,000 Euro at the same venue last year (and a few hundred, for just a few hours, there the previous year. We would have done more that previous year, but my grandmother died that day so it threw the collection into a bit of chaos, and it meant only my Dad could collect from my family for a little while, when they had planned to do a lot more.
A little tip. It is a good idea to try to get the boxes and ribbons to as many collectors as possible before the day in case something goes wrong with some of the collectors. At least if people have the stuff independently they can do their own time, even if the previous collector does not show up, so they are not reliant on other people to pass boxes and ribbons on to them.).
The Irish ME Association - for Information, Support and Research gets blue ribbon boxes and blue ribbons from BRAME in England. We use these then for the collection.
We did really well. We raised over 1470 Euro for one day (this was a rough count which needs to be recounted and bagged. We didn't count a lot of the smaller change, which could come to a few Euro more). This is about £1150 British Pounds.
We only had a small number of collectors in total across the day, 5 people in all (my parents, my brother and his girlfriend, and one person from our local group). So even with a small number a lot can be done. My parents did a morning shift and a later shift, as the collection was going really well and we wanted to do as well as we could.
We usually had two collectors at a time, though sometimes just one. Whatever way they were standing they we getting people coming in and going out of the shop. They still did well though when there was only one person on.
We had some large donations, one 50 Euro note, a few tenners, and quite a few fivers. Most of it was 2 and 1 Euro coins (though sometimes people give a few 1 Euro coins). We got almost no coppers (5 cent, 2 cent, and 1 cent coins). So people were giving quite a bit when they gave.
So we got 1470 Euro (approx £1150 Sterling) for collecting, starting at just after 10am to 7.15pm. It would be still worth doing even if we had managed to cover only a few hours.
We collected over 1,000 Euro at the same venue last year (and a few hundred, for just a few hours, there the previous year. We would have done more that previous year, but my grandmother died that day so it threw the collection into a bit of chaos, and it meant only my Dad could collect from my family for a little while, when they had planned to do a lot more.
A little tip. It is a good idea to try to get the boxes and ribbons to as many collectors as possible before the day in case something goes wrong with some of the collectors. At least if people have the stuff independently they can do their own time, even if the previous collector does not show up, so they are not reliant on other people to pass boxes and ribbons on to them.).
Saturday, 3 May 2008
The Sophia Mirza Archive
http://www.meaction uk.org.uk/ Criona.htm
The Sophia Mirza Archive, compiled by her mother, Criona Wilson.
The Sophia Mirza Archive, compiled by her mother, Criona Wilson.
ME: 'Invisible disease' is now easier to read
A simple blood test may revolutionise the way we treat patients with ME, reports Bob Ward
British researchers are close to developing, for the first time, a blood test and potential drug treatments for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), following groundbreaking work on its genetic origins.
A woman suffering from fatigue
'The stigma associated with the disease can sometimes be as much of a problem as the symptoms'
ME/CFS affects about one in 200 people, and women sufferers outnumber men by six to one. It causes a constant feeling of extreme exhaustion and malaise for more than six months, along with sleep abnormalities, memory and concentration difficulties and a great deal of pain.
In its most extreme form, the disease leaves sufferers bed-ridden and can even be fatal.
But patients now have new hope, thanks to research published in the Journal of Clinical Pathology by Dr Jonathan Kerr of St George's University of London and his colleagues.
They have identified 88 genes that produce different levels of proteins and other molecules in ME/CFS sufferers compared with the rest of the population.
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Click to learn more...
Dr Kerr's team carried out a complex analysis of the records of 55 patients and found that they could be divided into seven sub-types according to the specific gene combinations found in their white blood cells, and the severity of their symptoms.
The most acutely affected patients had 71 of the 88 gene abnormalities.
The results of this work should allow better understanding of the causes and development of the disease. Many of the genes are known to be affected when a person contracts a virus, a factor which is believed to trigger many cases of ME/CFS.
Importantly, the researchers also recognised that five of the 88 genes are targeted by drugs which are already used to treat other diseases.
The team is now investigating whether the faulty genes produce abnormal levels of proteins that can be detected as minute quantities of "biomarkers" in the blood of patients.
"If proven to be sensitive and specific indicators of the illness, the discovery of protein biomarkers could lead to the development of a diagnostic test for ME/CFS, which would revolutionise our approach to this disease," explains Dr Kerr.
He will present his results at a conference on ME/CFS biomedical research in Cambridge in May.
The research may even lead to a change in attitudes to the disease, often trivialised as "yuppie flu".
Sarah, 31, who was diagnosed with ME/CFS two years ago, says: "The stigma associated with the disease can sometimes be as much of a problem as the symptoms.
"Some think that it is 'all in the mind' and can be cured by a good night's sleep. It can be difficult to get friends and work colleagues to understand just how difficult it is to live with a disease that is so debilitating but virtually invisible."
Attitudes among funders of medical research also need to change, says Dr Neil Abbot, operations director at the charity ME Research UK. "Studies on the psychological aspects of ME/CFS seem to have vacuumed up attention and funding at the expense of hard-core biomedical studies," he says.
"Most of the £3 million spent by the Medical Research Council on the illness in the last six years has gone towards projects on the psychological management of the disease, while there is evidence that around 30 applications, some from established biomedical research groups, have not been funded."
The work carried out by Dr Kerr and his colleagues is funded by a small charity, the CFS Research Foundation, which was set up in 1993 by a group of doctors and scientists who were concerned about the direction and quality of work on the disease.
Its director, Anne Faulkner, is optimistic about the search for a cure: "We believe that this disease can and will be conquered, but it will need th
British researchers are close to developing, for the first time, a blood test and potential drug treatments for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), following groundbreaking work on its genetic origins.
A woman suffering from fatigue
'The stigma associated with the disease can sometimes be as much of a problem as the symptoms'
ME/CFS affects about one in 200 people, and women sufferers outnumber men by six to one. It causes a constant feeling of extreme exhaustion and malaise for more than six months, along with sleep abnormalities, memory and concentration difficulties and a great deal of pain.
In its most extreme form, the disease leaves sufferers bed-ridden and can even be fatal.
But patients now have new hope, thanks to research published in the Journal of Clinical Pathology by Dr Jonathan Kerr of St George's University of London and his colleagues.
They have identified 88 genes that produce different levels of proteins and other molecules in ME/CFS sufferers compared with the rest of the population.
advertisement
Click to learn more...
Dr Kerr's team carried out a complex analysis of the records of 55 patients and found that they could be divided into seven sub-types according to the specific gene combinations found in their white blood cells, and the severity of their symptoms.
The most acutely affected patients had 71 of the 88 gene abnormalities.
The results of this work should allow better understanding of the causes and development of the disease. Many of the genes are known to be affected when a person contracts a virus, a factor which is believed to trigger many cases of ME/CFS.
Importantly, the researchers also recognised that five of the 88 genes are targeted by drugs which are already used to treat other diseases.
The team is now investigating whether the faulty genes produce abnormal levels of proteins that can be detected as minute quantities of "biomarkers" in the blood of patients.
"If proven to be sensitive and specific indicators of the illness, the discovery of protein biomarkers could lead to the development of a diagnostic test for ME/CFS, which would revolutionise our approach to this disease," explains Dr Kerr.
He will present his results at a conference on ME/CFS biomedical research in Cambridge in May.
The research may even lead to a change in attitudes to the disease, often trivialised as "yuppie flu".
Sarah, 31, who was diagnosed with ME/CFS two years ago, says: "The stigma associated with the disease can sometimes be as much of a problem as the symptoms.
"Some think that it is 'all in the mind' and can be cured by a good night's sleep. It can be difficult to get friends and work colleagues to understand just how difficult it is to live with a disease that is so debilitating but virtually invisible."
Attitudes among funders of medical research also need to change, says Dr Neil Abbot, operations director at the charity ME Research UK. "Studies on the psychological aspects of ME/CFS seem to have vacuumed up attention and funding at the expense of hard-core biomedical studies," he says.
"Most of the £3 million spent by the Medical Research Council on the illness in the last six years has gone towards projects on the psychological management of the disease, while there is evidence that around 30 applications, some from established biomedical research groups, have not been funded."
The work carried out by Dr Kerr and his colleagues is funded by a small charity, the CFS Research Foundation, which was set up in 1993 by a group of doctors and scientists who were concerned about the direction and quality of work on the disease.
Its director, Anne Faulkner, is optimistic about the search for a cure: "We believe that this disease can and will be conquered, but it will need th
Prayer for ME Awareness week written by Reverend Michael Mayne
Heavenly Father, to whom the needs of every heart are known, give patience, courage, and hope to those suffering from M.E. and all other conditions of chronic fatigue, and strength to those who care for them.
Increase the sensitivity of doctors, the compassionate understanding of family, colleagues, and neighbours, and the skill of researchers as they seek a cure.
We ask this through one who restored the sick to fullness of life, Jesus Christ, Our Lord.
A Athair neamhaí, gurb eol duit riachtanais an uile dhuine, tabhair foidhne, misneach agus dóchas dóibh siúd atá ag fulaingt ón M.E.agus ó gach uile cineál de thuirse ainsealaí, agus neartaigh, lucht a gcúram.
Méidigh ar thuiscint dochtúirí, ar chomhbá teaghlaigh, cairde agus comharsain na nothar agus ar scileanna luct taighde ina n-iarrachtaí chun liegheas ar an ngalar seo a aimssiú.
Iarraimíd é seo ort trí Íosa Críost ar dTiarna, eisean a thug iomláine a mbeatha do na heasláin.
Increase the sensitivity of doctors, the compassionate understanding of family, colleagues, and neighbours, and the skill of researchers as they seek a cure.
We ask this through one who restored the sick to fullness of life, Jesus Christ, Our Lord.
A Athair neamhaí, gurb eol duit riachtanais an uile dhuine, tabhair foidhne, misneach agus dóchas dóibh siúd atá ag fulaingt ón M.E.agus ó gach uile cineál de thuirse ainsealaí, agus neartaigh, lucht a gcúram.
Méidigh ar thuiscint dochtúirí, ar chomhbá teaghlaigh, cairde agus comharsain na nothar agus ar scileanna luct taighde ina n-iarrachtaí chun liegheas ar an ngalar seo a aimssiú.
Iarraimíd é seo ort trí Íosa Críost ar dTiarna, eisean a thug iomláine a mbeatha do na heasláin.
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