Wednesday, 11 November 2009
December Meeting
The next meeting is on Tuesday December 1st in the Quaker Rooms Beccles, when we will be having a Christmas Meal and our annual photo competition. The meal is 12.45 for 1.00pm start with the photo competition at approx 2.00pm
Thursday, 17 September 2009
October Meeting
The next meeting is on Tuesday October 6th at 1.45pm in the Quaker Rooms, Beccles. We will be having a talk by two O/Ts from the ME Service.
Wednesday, 22 July 2009
August Meeting
The august meeting will take place in the Quaker Rooms, Beccles on Tuesday August 4th at 1.45pm. This will be a social gathering.
Monday, 4 May 2009
'Just Four Quid'
'Save a lot, give a little' – as charities launch £1m appeal for ME research.
Two charities are launching a recession-busting campaign to raise £1,000,000 for biomedical research into the much-misunderstood illness ME/ Chronic Fatigue Syndrome.
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 atwww.justfourquid.com
"If all 250,000 people in the UK with ME/CFS gave just £4 to the appeal we'd reach the £1,000,000 target in next to no time. But nothing is ever that simple", said Tony Britton, publicity manager at the ME Association.
"So we've designed this blog to help people save money on everything from their utility bills to their haircuts in the hope that, once they've saved a little, they'll give some of it back."
"Of course, we'll always welcome straightforward donations. People visiting the blog can choose to support either charity, or both".
Inspired partly by the journalism of personal finance guru Martin Lewis, the "save a lot, give a bit back" approach could well become a model for charity appeals in these troubled times.
The Charity Commission has reported a fall in many charities' donations as the recession bites. But the `Just Four Quid' Appeal aims to buck the trend by leaving participants better off by the end of the year – even though they've given little and often to the campaign.
www.justfourquid. com
"It's always been a bone of contention among people with the illness that the big medical research bodies have put far too much money into studying psychological interventions for ME/CFS", added Dr Neil Abbot, operations director at ME Research UK.
" 'Just Four Quid' aims to give ordinary people the chance to swing the pendulum back to much-needed physical research into the nature and causes of ME – and help bring forward the day when there are reliable diagnostic tests and even a cure for this illness".
Two charities are launching a recession-busting campaign to raise £1,000,000 for biomedical research into the much-misunderstood illness ME/ Chronic Fatigue Syndrome.
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 atwww.justfourquid.com
"If all 250,000 people in the UK with ME/CFS gave just £4 to the appeal we'd reach the £1,000,000 target in next to no time. But nothing is ever that simple", said Tony Britton, publicity manager at the ME Association.
"So we've designed this blog to help people save money on everything from their utility bills to their haircuts in the hope that, once they've saved a little, they'll give some of it back."
"Of course, we'll always welcome straightforward donations. People visiting the blog can choose to support either charity, or both".
Inspired partly by the journalism of personal finance guru Martin Lewis, the "save a lot, give a bit back" approach could well become a model for charity appeals in these troubled times.
The Charity Commission has reported a fall in many charities' donations as the recession bites. But the `Just Four Quid' Appeal aims to buck the trend by leaving participants better off by the end of the year – even though they've given little and often to the campaign.
www.justfourquid. com
"It's always been a bone of contention among people with the illness that the big medical research bodies have put far too much money into studying psychological interventions for ME/CFS", added Dr Neil Abbot, operations director at ME Research UK.
" 'Just Four Quid' aims to give ordinary people the chance to swing the pendulum back to much-needed physical research into the nature and causes of ME – and help bring forward the day when there are reliable diagnostic tests and even a cure for this illness".
Wednesday, 15 April 2009
AGM May12th
The AGM of the Beccles & District ME/CFS Support Group will take place on Tuesday May 12th at 1.45pm, in the Quaker Rooms Beccles.
Sunday, 8 March 2009
April Meeting
The next meeting is on Tuesday April 7th at 1.45pm in the Quaker Rooms, Beccles, when we will be having a talk on Crystal Healing.
Tuesday, 10 February 2009
TYMES Trust Support Judical Review of NICE Guideline
The Trust is actively supporting this week's Judicial Review of the NICE GUideline on CFS/ME (CG53) which was published in 2007.
The case against NICE has been brought by Kevin Short and Douglas Fraser, two patients who have had Myalgic Encephalomyelitis (ME) for many years.
The hearing is in the Royal Courts of Justice, The Strand, London. Dates: Wednesday 11th and Thursday 12th February 2009.
The Trust published a two-page article on the NICE Guideline in Vision 2007-2 entitled 'The Good The Bad and The Ugly'. You can read it on our magazine page here www.tymestrust.org/tymesmagazine.htm
This is a balanced article, quoting some statements by NICE that might help families but also detailing some of the very serious problems with the Guideline.
Overall, the Trust takes the robust view that this Guideline is 'not fit for purpose'. It was our fear when the Guideline was published that the bad would drastically outweigh any good that was in it, and in our experience, this is precisely what has happened.
As we feared, the impression given by NICE of the success of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for ME, coupled with their recommendation that they be offered to all, has already led to a blanket application of the graded activity approach by ME clinics in the UK and abroad. It is routinely applied to children.
Doctors and teachers suspect that when a child does not respond positively to this type of management, there may be sinister reasons, such as child abuse, neglect, or Munchausen's Syndrome by Proxy (now referred to as FII).
Thus Child Protection investigations appear to have increased and families are under even more pressure than before via graded activity programmes to get their children back into school, no matter what this does to their educational results, or whether it is 'suitable' education under the law for that particular child.
The Trust's presentation to the All Party Parliamentary Group on ME concerning Child Protection Issues is here: www.tymestrust.org/pdfs/childprotectionissues.pdf
We have provided Witness Statements to support this Judicial Review. The vast majority of ME organisations are also in support of the Claimants.
The case against NICE has been brought by Kevin Short and Douglas Fraser, two patients who have had Myalgic Encephalomyelitis (ME) for many years.
The hearing is in the Royal Courts of Justice, The Strand, London. Dates: Wednesday 11th and Thursday 12th February 2009.
The Trust published a two-page article on the NICE Guideline in Vision 2007-2 entitled 'The Good The Bad and The Ugly'. You can read it on our magazine page here www.tymestrust.org/tymesmagazine.htm
This is a balanced article, quoting some statements by NICE that might help families but also detailing some of the very serious problems with the Guideline.
Overall, the Trust takes the robust view that this Guideline is 'not fit for purpose'. It was our fear when the Guideline was published that the bad would drastically outweigh any good that was in it, and in our experience, this is precisely what has happened.
As we feared, the impression given by NICE of the success of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for ME, coupled with their recommendation that they be offered to all, has already led to a blanket application of the graded activity approach by ME clinics in the UK and abroad. It is routinely applied to children.
Doctors and teachers suspect that when a child does not respond positively to this type of management, there may be sinister reasons, such as child abuse, neglect, or Munchausen's Syndrome by Proxy (now referred to as FII).
Thus Child Protection investigations appear to have increased and families are under even more pressure than before via graded activity programmes to get their children back into school, no matter what this does to their educational results, or whether it is 'suitable' education under the law for that particular child.
The Trust's presentation to the All Party Parliamentary Group on ME concerning Child Protection Issues is here: www.tymestrust.org/pdfs/childprotectionissues.pdf
We have provided Witness Statements to support this Judicial Review. The vast majority of ME organisations are also in support of the Claimants.
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