Dear All,
Criona Wilson, mother of Sophia Mirza, has just posted up a new webpage about the World Health Organisation' s classification of ME and its relevance to the NICE guidelines.
At the bottom of the page is a link to lists of MPs, Lords, media and the WHO itself.
http://www.sophiaandme.org.uk/ w.h.o.%20and% 20m.e..html
Permission to repost
Wednesday 27 May 2009
I was a RAF high-flyer .. now I can barely get out of bed
http://www.thescottishsun.co.uk/scotsol/homepage/news/article2433959.ece
Anouncement from the MEA website - may be reposted
As part of the information gathering process in relation to establishing a UK post-mortem and tissue bank for ME/CFS research, Dr Charles Shepherd visited the Medical Research Council's Brain Banks in Edinburgh last week - where he met with Dr Colin Smith and Professor James Ironside.
The Edinburgh Brain Banks currently collect, store and provide tissue to researchers who are looking at a number of diseases - in particular HIV/AIDs (where tissue in addition to brain and nervous system is collected) and CJD. They also collect brain tissue from people without neurological disease for control purposes.
Dr Shepherd and Tony Britton will both be attending the Invest in ME Conference on Friday this week where they will have an information leaflet that summarises the current state of affairs regarding the establishment of a UK brain and tissue bank for ME/CFS research. Dr Shepherd and Tony Britton will also be very happy to talk to anyone who is interested in this aspect of ME/CFS research during breaks at the meeting.
Fundraising information for the MEA tissue bank initiative can be found at: www.walkingtheamazon.com - you can donate money via a link on the MEA charity page on this site or via the 'Just Four Quid' link on the MEA website: http://www.meassociation.org. uk
ENDS
The Edinburgh Brain Banks currently collect, store and provide tissue to researchers who are looking at a number of diseases - in particular HIV/AIDs (where tissue in addition to brain and nervous system is collected) and CJD. They also collect brain tissue from people without neurological disease for control purposes.
Dr Shepherd and Tony Britton will both be attending the Invest in ME Conference on Friday this week where they will have an information leaflet that summarises the current state of affairs regarding the establishment of a UK brain and tissue bank for ME/CFS research. Dr Shepherd and Tony Britton will also be very happy to talk to anyone who is interested in this aspect of ME/CFS research during breaks at the meeting.
Fundraising information for the MEA tissue bank initiative can be found at: www.walkingtheamazon.com - you can donate money via a link on the MEA charity page on this site or via the 'Just Four Quid' link on the MEA website: http://www.meassociation.org. uk
ENDS
Lismore artist is awarded 2009 ArtLinks Bursary
http://www.munster-express.ie/entertainment/art/lismore-artist-is-awarded-2009-artlinks-bursary/
Mum-to-be Sarah also facing test of coping with ME
http://www.echo-news.co.uk/echofeatures/health/4358973.Mum_to_be_Sarah_also_/
A LEEDS nurse and an ME patient have written a book which they hope will > help people cope with Chronic Fatigue
http://www.yorkshirepost.co.uk/health/Fighting-back-in-the-battle.5264118.jp
Just Four Quid appeal
(From Tony Britton)
MAY BE REPOSTED
The 'Just Four Quid' appeal which aims over the course of a year to
raise £1m for biomedical research into ME/CFS has declared this as
"The Week of Happy Ignorance".
Last week, appeal flagged up a large number of ways in which people can
save money on household bills. This week, their website suggests folk
take a holiday from all the troubles of the world by not buying papers
and even avoiding the news on radio, TV and the internet.
The organiser says in her latest blog:
"Quite a few people think that we see too much news. Journalist John
Naish, in his book "Enough", is one of them. He thinks that in
these days of 24-hour rolling news, we get a distorted idea of the world
through seeing the same footage of the latest horrors over and over
again. With the same images played repeatedly, we get the idea that the
world is much worse than it actually is; we forget that it's
"news" because it's rare.
"We also, he believes, forget that it's not local; much of what we
see on our TV news is happening thousands of miles away but our
primitive brains – wired to understand what's going on within
our Neolithic ancestors' walking range – doesn't really
register this and feels it has to keep watching the news for more
details of this "local and imminent" threat.
"Some psychologists feel that the stress that arises from the news is so
great that we shouldn't watch more than 30 minutes a day, in order
to avoid anxiety-related depression. For me, part of the
"holidayness" of any holiday is that I don't read the paper
and don't watch the news, so I can believe there's something in
this."
So how about adding "stress-buster" to the recession-busting elements of
JFQ and tip any savings made from not buying the papers this week into
the JFQ Appeal which benefits The ME Association's Ramsay Research Fund
and ME Research UK.
For more information about the Just Four Quid appeal, please click here
MAY BE REPOSTED
The 'Just Four Quid' appeal which aims over the course of a year to
raise £1m for biomedical research into ME/CFS has declared this as
"The Week of Happy Ignorance".
Last week, appeal flagged up a large number of ways in which people can
save money on household bills. This week, their website suggests folk
take a holiday from all the troubles of the world by not buying papers
and even avoiding the news on radio, TV and the internet.
The organiser says in her latest blog:
"Quite a few people think that we see too much news. Journalist John
Naish, in his book "Enough", is one of them. He thinks that in
these days of 24-hour rolling news, we get a distorted idea of the world
through seeing the same footage of the latest horrors over and over
again. With the same images played repeatedly, we get the idea that the
world is much worse than it actually is; we forget that it's
"news" because it's rare.
"We also, he believes, forget that it's not local; much of what we
see on our TV news is happening thousands of miles away but our
primitive brains – wired to understand what's going on within
our Neolithic ancestors' walking range – doesn't really
register this and feels it has to keep watching the news for more
details of this "local and imminent" threat.
"Some psychologists feel that the stress that arises from the news is so
great that we shouldn't watch more than 30 minutes a day, in order
to avoid anxiety-related depression. For me, part of the
"holidayness" of any holiday is that I don't read the paper
and don't watch the news, so I can believe there's something in
this."
So how about adding "stress-buster" to the recession-busting elements of
JFQ and tip any savings made from not buying the papers this week into
the JFQ Appeal which benefits The ME Association's Ramsay Research Fund
and ME Research UK.
For more information about the Just Four Quid appeal, please click here
Friday 15 May 2009
National Institute for Health & Clinical Excellence - coming to Belfast
Wednesday 20 May 2009
NICE wants to meet you and hear your questions.
NICE Public Board Meeting
Every two months the NICE Board holds its meeting in a different venue; moving from region to region to ensure that all those interested in our work can come along to hear about the latest developments at NICE and question the Board about policy.
NICE Question Time
A question time session is held before the main Board meeting. This session offers a great opportunity for you to raise any questions you have about our work and is open to the general public.
Carole Longson, Health Technology Evaluation Centre Director at NICE, will give a brief presentation on the latest work of the technology appraisal programme followed by a short presentation from Val Moore, Implementation Director at NICE. Attendees will have an opportunity to put their questions to Carole Longson, Val Moore and Andrew Dillon, Chief Executive at NICE.
NICE Question Time is open to the general public
NICE Question Time – Belfast
* Time: 12.30-1.30pm
* Lunch is provided from 12 noon.
NICE Board Meeting
* Time: 1.45pm
Venue:
Belfast City Hospital
51 Lisburn Road
Belfast
BT9 7AB
to book your place go to:
http://www.nice.org.uk/aboutnice/whoweare/board/boardmeetings/2009/20May2009.jsp
NICE wants to meet you and hear your questions.
NICE Public Board Meeting
Every two months the NICE Board holds its meeting in a different venue; moving from region to region to ensure that all those interested in our work can come along to hear about the latest developments at NICE and question the Board about policy.
NICE Question Time
A question time session is held before the main Board meeting. This session offers a great opportunity for you to raise any questions you have about our work and is open to the general public.
Carole Longson, Health Technology Evaluation Centre Director at NICE, will give a brief presentation on the latest work of the technology appraisal programme followed by a short presentation from Val Moore, Implementation Director at NICE. Attendees will have an opportunity to put their questions to Carole Longson, Val Moore and Andrew Dillon, Chief Executive at NICE.
NICE Question Time is open to the general public
NICE Question Time – Belfast
* Time: 12.30-1.30pm
* Lunch is provided from 12 noon.
NICE Board Meeting
* Time: 1.45pm
Venue:
Belfast City Hospital
51 Lisburn Road
Belfast
BT9 7AB
to book your place go to:
http://www.nice.org.uk/aboutnice/whoweare/board/boardmeetings/2009/20May2009.jsp
Monday 11 May 2009
ME Awareness month
SIR - I am writing to draw your readers' attention to the month of May being ME Awareness month.
Myalgic Encephalomyelitis (ME), sometimes also referred to as Chronic
Fatigue Syndrome (CFS) has been a much misunderstood illness by the general
public. It is estimated to affect at least 250,000 people in the UK. It is
not just about feeling tired all the time but a debilitating and distressing
condition, which is classified by the World Health Organisation as "a
disease of the central nervous system".
The illness may develop gradually or occur as a result of an acute infection
or virus. There is NO CURE for M.E,eventhough it is estimated to affect 250,000 people in the UK many of them chidren.
M.E can be a very frightening, isolating, painful,and severely life limiting illness.
Some of the symptons are,
difficulties with memory and concentration,
Sensitivity to noise and light
Swollen glands, mouth ulcers,
Trouble with balance and coordination,
Vision, hearing
Digestive problems, IBS, headaches,
Poor temperture control, Severe Nausea
Pain in muscles, joints, head, back, limbs, chest and stomach
Muscular weakness and twitching is common
This is only some of the symptons, there are to many to list.
National surveys have revealed that 25% of people with the illness were so
severely affected that they have at some time been housebound or bedbound
and that over 70% of adults had lost their jobs. Lets not forget about the children with ME. Kids who develop M.E in their teens go into adulthood having lost all their social contact, living each day in Pain and very liitle understanding or help fom the medical profession. Not only have M.E sufferers have to put up with this terrible Chronic virtually invisable illness they also have to put up with the disbelief that comes along with it.
Inappropriate educational demands impede recovery and are a key cause of relapse in children.
Energy Efficient Education (home tuition, distance or virtual learning) can maximise achievement whilst protecting health.
Social contact can be preserved through visits from school and friends and through making new friends who understand the limitations imposed by the illness, for example, through the Trust.
Children with ME are legally entitled to education suited to their medical and special educational needs.
ME/CFS can affect anyone at any age and from any ethnic group
More research is needed to improve diagnosis and find effective treatments
To date in Belfast we have now raised just over £16,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately the governments continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland, and the 250,00 sufferers in the UK.
We have just took part in the Belfast Marathon for the 3rd year in aid of ME Research and donations are still coming in. Anyone still wanting to make a donation can do so up until August by visiting www.justgiving.antoinettechristie or you can phone me on 07809370811 or Jeanette on 0793637881.
Myalgic Encephalomyelitis (ME), sometimes also referred to as Chronic
Fatigue Syndrome (CFS) has been a much misunderstood illness by the general
public. It is estimated to affect at least 250,000 people in the UK. It is
not just about feeling tired all the time but a debilitating and distressing
condition, which is classified by the World Health Organisation as "a
disease of the central nervous system".
The illness may develop gradually or occur as a result of an acute infection
or virus. There is NO CURE for M.E,eventhough it is estimated to affect 250,000 people in the UK many of them chidren.
M.E can be a very frightening, isolating, painful,and severely life limiting illness.
Some of the symptons are,
difficulties with memory and concentration,
Sensitivity to noise and light
Swollen glands, mouth ulcers,
Trouble with balance and coordination,
Vision, hearing
Digestive problems, IBS, headaches,
Poor temperture control, Severe Nausea
Pain in muscles, joints, head, back, limbs, chest and stomach
Muscular weakness and twitching is common
This is only some of the symptons, there are to many to list.
National surveys have revealed that 25% of people with the illness were so
severely affected that they have at some time been housebound or bedbound
and that over 70% of adults had lost their jobs. Lets not forget about the children with ME. Kids who develop M.E in their teens go into adulthood having lost all their social contact, living each day in Pain and very liitle understanding or help fom the medical profession. Not only have M.E sufferers have to put up with this terrible Chronic virtually invisable illness they also have to put up with the disbelief that comes along with it.
Inappropriate educational demands impede recovery and are a key cause of relapse in children.
Energy Efficient Education (home tuition, distance or virtual learning) can maximise achievement whilst protecting health.
Social contact can be preserved through visits from school and friends and through making new friends who understand the limitations imposed by the illness, for example, through the Trust.
Children with ME are legally entitled to education suited to their medical and special educational needs.
ME/CFS can affect anyone at any age and from any ethnic group
More research is needed to improve diagnosis and find effective treatments
To date in Belfast we have now raised just over £16,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately the governments continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland, and the 250,00 sufferers in the UK.
We have just took part in the Belfast Marathon for the 3rd year in aid of ME Research and donations are still coming in. Anyone still wanting to make a donation can do so up until August by visiting www.justgiving.antoinettechristie or you can phone me on 07809370811 or Jeanette on 0793637881.
Tuesday 5 May 2009
Belfast Marathon Blog - In Aid of ME Research
In Aid of ME Research May 4th 2009
Today did not start of promising. With rain forecast, we dug out the old rain coats and made our way to the City Hall to cheer on Paul and Chris who were running the first and second leg of the Relay of the Belfast City Marathon (6 miles & 3.5 miles)). Jeanette and Sandra joined them in Bridge Street for the 2nd leg, and we were joined by Paul and Leanne, making our way up the Falls, Clonard, onto the Springfeild Road and through to Lanark Way. We were greeted on the Shankill by our Auntie Margaret, and finally completed the 2nd leg of the relay at Hillview Road (3.5 miles). We then had a lovely walk back home. Sam our veteran runner continued on for the next 2 legs from Hillview Road to Gideon's Green (7.1 miles) and then onto Corporation Street (4.8 miles). Not having had enough fun, Jeanette Paul, and Leanne joined me for the final run in from Corporation Street to the Ormeau Park (4.8 miles). We had a lovely run along the embankment, with lovely views across to Ormeau Park. Jeanette did consider swimming across, it was very tempting, but alas decided to struggle on. The last mile was the killer - someone definitely was moving the gate to the Park, or maybe it just felt that way. We had great encouragement along the way, mind you if we the heard the words "not long now" one more time we thought we might have to punch someone (god bless them). Paul went through the finish line at 3 hours 24 minutes without his timing tag lol, I struggled through in 3hrs 34 miniutes with Jeanette and Leanne close behind. We then made our way back out of the park another 2 mile jaunt to the van for our pick up.
Bloody hell, we thought, how are we going to beat that next year.
Anyone wishing to sponsor us can still do so on our Just giving page at:
http://www.justgiving.com/antoinette...
Big thank you to all our supporters and sponsors, to Chris and Sam for their continued support throughout the years, to Leanne, who was a wee star and great running partner. Thank you to the Apartment at the City Hall, for the lovely coffee and use of the their facilities. Well done to all those who participated along the way, in particular the guys running for the Alzheimer's Society, who we met and chatted with at the City Hall.
2010 here we come!
Bloody hell, we thought, how are we going to beat that next year.
Anyone wishing to sponsor us can still do so on our Just giving page at:
http://www.justgiving.com/antoinette...
Big thank you to all our supporters and sponsors, to Chris and Sam for their continued support throughout the years, to Leanne, who was a wee star and great running partner. Thank you to the Apartment at the City Hall, for the lovely coffee and use of the their facilities. Well done to all those who participated along the way, in particular the guys running for the Alzheimer's Society, who we met and chatted with at the City Hall.
2010 here we come!
ME Research UK and the ME Association have joined forces in the `Just Four Quid' campaign
ME Research UK and the ME Association have joined forces in the `Just Four Quid' campaign which will use the internet to encourage donors to take advantage of weekly money-saving tips, and then give some of the money they save to the appeal.
The campaign will begin on 12 May 2009 – International ME Awareness Day – and last for a full year.
It will be run through a credit-crunching daily blog at
www.justfourquid.com
ME/CFS: Classification Issues
| ME/CFS: Classification Issues | |||
 | |||
| Permission to Repost http://www.meactionuk.org.uk/ME_CFS_... Margaret Williams 3rd May 2009 | |||
Saturday 2 May 2009
Campaigning for Research into ME (RiME)
Permission to Repost
Campaigning for Research into ME (RiME)
NHS Services Inquiry
RiME's Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).
We encourage ME patients and carers to write in (those who can). If you do, please send us copies. We feel it useful in these situations to have a bank of comments. If those running the Inquiry were to publish in 2010 a favorable report and say 'we had few, if any, adverse comments' at earlier stages of the process, that comment can then be rebutted (remember Lord Turnberg's remark re. the Royal Colleges Report in the House of Lords Jan. 04?).
Comments to turnerd@parliament. uk (in word format) or Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG by May 5.
Note: the May 5 deadline is for surveys comments (oral and written evidence comes later).
RiME will shortly be setting up a new folder on its website entitled 'Services Inquiry'. It will contain information on the Terms of Reference, RiME's responses, and others' comments.
Campaigning for Research into ME (RiME)
NHS Services Inquiry
RiME's Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).
We encourage ME patients and carers to write in (those who can). If you do, please send us copies. We feel it useful in these situations to have a bank of comments. If those running the Inquiry were to publish in 2010 a favorable report and say 'we had few, if any, adverse comments' at earlier stages of the process, that comment can then be rebutted (remember Lord Turnberg's remark re. the Royal Colleges Report in the House of Lords Jan. 04?).
Comments to turnerd@parliament. uk (in word format) or Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG by May 5.
Note: the May 5 deadline is for surveys comments (oral and written evidence comes later).
RiME will shortly be setting up a new folder on its website entitled 'Services Inquiry'. It will contain information on the Terms of Reference, RiME's responses, and others' comments.
ME/CFS: TERMINOLOGY
ME/CFS: TERMINOLOGY
Permission to Reposthttp://www.meactionuk.org.uk/ ME_CFS_TERMINOLOGY.htm
ME/CFS: TERMINOLOGY
Evidence that ME/CFS is not a somatisation disorder
Evidence that ME/CFS is not a somatisation disorder
Permission to Repost
http://www.meactionuk.org.uk/ME_CFS_...
Evidence that ME/CFS is not a somatisation disorder
Margaret Williams 26th April 2009
http://www.meactionuk.org.uk/ME_CFS_...
Evidence that ME/CFS is not a somatisation disorder
Margaret Williams 26th April 2009
The subject of the MEA website survey for May is how much have you spent on treatments for ME/CFS th
MAY BE REPOSTED
The subject of the MEA website survey for May is how much have you spent on treatments for ME/CFS that are not available on the NHS.
Vote via the MEA website at: http://www.meassociation.org. uk
Thank you to everyone who voted in the April survey on trigger factors. This was the largest response to a website poll so far recorded and is probably the largest result of patient evidence on this topic. The results can be found on the MEA website as well - along with those for all our other monthly surveys.
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