Reading Chronicle 18th September 2008
Reading ME sufferer has been holding a personal video dialogue with Prime Minister Gordon Brown.
Miriam Potter, from Reading Area ME group, posted a video on Youtube via a special Ask the PM session advertised in a Number 10 newsletter, and asked Mr Brown what the Government is doing to help people with the condition, how doctors are being trained to help people and what research was being undertaken to find a cause and cure.
In a personal response, also posted on Youtube, Mr Brown says: “ME affects about one in 300 people in the United Kingdom so it’s a condition we take very seriously indeed. A lot of work has gone into this over the last four years in the NHS where £8.5m has been spent.
“The Medical Research Council has made it clear that research into ME and Chronic Fatigue Syndrome, Miriam, is something we are taking very seriously indeed. It’s a big part of the research programme for the future and I hope we will be able to report results in due course that will show that not only has the research been done, but it has yielded results that will benefit you and many other people.”
Miriam said she was ‘gob-smacked’ to receive a response, and added: “I opened it and went ‘wow!’ I couldn’t believe it, and when they mention you by name you hope they’ve listened to what you have to say.”
Monday, 22 September 2008
Wednesday, 27 August 2008
Lifeline for ME Families
Reading Chronicle 10th July 2008
A group to help parents of children with ME in Berkshire has met for the first time.
Reading Area ME Support Group is currently creating a network aimed specifically at supporting parents of children with ME.
Group spokeswoman Miriam Potter said: “When children are diagnosed with ME, and often long before the diagnosis, parents feel a sense of desperation, isolation and helplessness.
“They can find themselves confronted with conflicting information and confusing internet research trying to make sense of an illness that few people really understand. Often they find themselves in turmoil not really knowing what to do for their child.
“We linked together a group of parents and have started to make plans to create our own network aimed at supporting parents to enable them in turn to help their children.”
A group of six parents met for the first time in Reading at the end of June to exchange stories and offer practical advice and support.
The next meeting is planned for September, and anyone with an interest can contact: Brenda.
In Brief
MP to meet patient group
Members of the Reading Area ME Group are meeting frontbench Tory MP Theresa May tomorrow (Friday).
The shadow leader of the House of Commons and Maidenhead MP will listen to the group’s concerns over services for ME sufferers in Berkshire at Twyford’s St Mary’s Church Hall, Station Road, from 11am-12.30pm.
Miriam
A group to help parents of children with ME in Berkshire has met for the first time.
Reading Area ME Support Group is currently creating a network aimed specifically at supporting parents of children with ME.
Group spokeswoman Miriam Potter said: “When children are diagnosed with ME, and often long before the diagnosis, parents feel a sense of desperation, isolation and helplessness.
“They can find themselves confronted with conflicting information and confusing internet research trying to make sense of an illness that few people really understand. Often they find themselves in turmoil not really knowing what to do for their child.
“We linked together a group of parents and have started to make plans to create our own network aimed at supporting parents to enable them in turn to help their children.”
A group of six parents met for the first time in Reading at the end of June to exchange stories and offer practical advice and support.
The next meeting is planned for September, and anyone with an interest can contact: Brenda.
In Brief
MP to meet patient group
Members of the Reading Area ME Group are meeting frontbench Tory MP Theresa May tomorrow (Friday).
The shadow leader of the House of Commons and Maidenhead MP will listen to the group’s concerns over services for ME sufferers in Berkshire at Twyford’s St Mary’s Church Hall, Station Road, from 11am-12.30pm.
Miriam
Tuesday, 26 August 2008
ME Sufferer Seeks Research
Reading Chronicle 24th July 2008
An ME sufferer has called for more research into links between her condition and chemical allergies.
As a landmark ease in the High Court this week examines how the Government monitors the health impact of pesticides, Elaine English from Grazeley Green said chemicals in agricultural sprays and other everyday items are having an adverse affect on her health, and called for more research to investigate a connection between ME and multiple chemical sensitivities.
She said: “Its not necessarily cause and effect, but I do think there is a need for more research.
“I have suffered from multiple chemical sensitivities since the 1980s. Originally I reacted to chemicals such as turpentine, white spirit and gloss pain. But I began to be sensitive to other chemicals including a range of perfumes and newspaper print.
“They can cause a kind of brain fog, headaches and aching muscles, the problem is these can also be symptoms of ME, but there is a crossover.”
Mother of two Elaine, 56, said that chemical spraying at nearby farms leaves her with breathing difficulties, and said that although farmers do not have to warn residents, there are no protections in place.
She said: “When I had a severe relapse of ME and I had various blood tests done, including lymphocyte blood tests, which confirmed my known chemical sensitivities and also identified some new ones.
“They found that I had absorbed a chemical found in many perfumes which had accumulated and actually damaged my cells.”
Miriam Potter of Reading Area ME Group said: “Chemicals and toxins are very much part of an ME sufferers life, because ME sufferers can be very sensitive to toxins and chemicals of many kinds.
“My personal way of coping with them is to use bicarbonate of soda instead of washing powder for washing clothes, and using diluted vinegar as a stain remover. I also make my own liquid soap and cleaning products, its dead easy, and anyone can do it.”
Miriam
An ME sufferer has called for more research into links between her condition and chemical allergies.
As a landmark ease in the High Court this week examines how the Government monitors the health impact of pesticides, Elaine English from Grazeley Green said chemicals in agricultural sprays and other everyday items are having an adverse affect on her health, and called for more research to investigate a connection between ME and multiple chemical sensitivities.
She said: “Its not necessarily cause and effect, but I do think there is a need for more research.
“I have suffered from multiple chemical sensitivities since the 1980s. Originally I reacted to chemicals such as turpentine, white spirit and gloss pain. But I began to be sensitive to other chemicals including a range of perfumes and newspaper print.
“They can cause a kind of brain fog, headaches and aching muscles, the problem is these can also be symptoms of ME, but there is a crossover.”
Mother of two Elaine, 56, said that chemical spraying at nearby farms leaves her with breathing difficulties, and said that although farmers do not have to warn residents, there are no protections in place.
She said: “When I had a severe relapse of ME and I had various blood tests done, including lymphocyte blood tests, which confirmed my known chemical sensitivities and also identified some new ones.
“They found that I had absorbed a chemical found in many perfumes which had accumulated and actually damaged my cells.”
Miriam Potter of Reading Area ME Group said: “Chemicals and toxins are very much part of an ME sufferers life, because ME sufferers can be very sensitive to toxins and chemicals of many kinds.
“My personal way of coping with them is to use bicarbonate of soda instead of washing powder for washing clothes, and using diluted vinegar as a stain remover. I also make my own liquid soap and cleaning products, its dead easy, and anyone can do it.”
Miriam
Thursday, 24 July 2008
Wimpey magic wand
Reading Chronicle: June 5th 2008 Wimpey’s Magic Wand!
George Wimpey South West Thames has waved its magical wand over Reading to make the dreams of local community groups come true after it ran recently a competition in the Reading Chronicle to give money away to local community groups. After being inundated with requests from hopeful community groups asking for help, George Wimpey has chosen to play fairy godmother to just four lucky local community groups.
Nina Fitzgerald, sales manager for Regis Park in Earley, said “We received a vast number of requests for extremely worthwhile causes, which made the decision very difficult to make.
We hope that the money we provide to the four chosen groups will help to not only improve the facilities on offer but also help to enhance the quality of lives of some of the people within the community”.
First prize: CONGRATULATIONS
• Reading ME Support Group, to help cover the cost of the room hire and marketing materials of the group
George Wimpey South West Thames has waved its magical wand over Reading to make the dreams of local community groups come true after it ran recently a competition in the Reading Chronicle to give money away to local community groups. After being inundated with requests from hopeful community groups asking for help, George Wimpey has chosen to play fairy godmother to just four lucky local community groups.
Nina Fitzgerald, sales manager for Regis Park in Earley, said “We received a vast number of requests for extremely worthwhile causes, which made the decision very difficult to make.
We hope that the money we provide to the four chosen groups will help to not only improve the facilities on offer but also help to enhance the quality of lives of some of the people within the community”.
First prize: CONGRATULATIONS
• Reading ME Support Group, to help cover the cost of the room hire and marketing materials of the group
Monday, 7 July 2008
ME sufferers can meet MP
Reading Chronicle Thursday 3rd July 2008
People with ME have a chance to raise the issues with their MP next week.
Theresa May, MP for Maidenhead, Twyford and Woodley is visiting St Mary's Church in Station Road, Twyford, to hear more about the condition and speak to those affected on Friday (11) from 11am - 12.30pm.
The Primary Care Trust (PCT) has recently done a needs assessment for people with ME (myalgic encephalomyelitis, also known as chronic fatigue syndrome), and campaigners are still waiting for the report into the poorly understood condition.
Around 1,000 to 2,000 people are thought to have ME in the Berkshire West area, covering Reading, Newbury and Wokingham and the towns and villages surrounding them.
Members of the Reading Area ME Support Group are joining with similar organisations to call for more research into the condition, as well as more help from social services and the NHS in coping day to day.
People with ME have a chance to raise the issues with their MP next week.
Theresa May, MP for Maidenhead, Twyford and Woodley is visiting St Mary's Church in Station Road, Twyford, to hear more about the condition and speak to those affected on Friday (11) from 11am - 12.30pm.
The Primary Care Trust (PCT) has recently done a needs assessment for people with ME (myalgic encephalomyelitis, also known as chronic fatigue syndrome), and campaigners are still waiting for the report into the poorly understood condition.
Around 1,000 to 2,000 people are thought to have ME in the Berkshire West area, covering Reading, Newbury and Wokingham and the towns and villages surrounding them.
Members of the Reading Area ME Support Group are joining with similar organisations to call for more research into the condition, as well as more help from social services and the NHS in coping day to day.
Friday, 20 June 2008
Reading Group appears on You Tube again.
Reading Chronicle 5th June 2008
Reading ME Group is continuing its' campaign for better support services in Berkshire.
The group has hit the world wide web again, with a video on You Tube, calling for ME sufferers to take part in a Primary Care Trust needs assessment and lobby more money to be spent on services.
Members, also held an alternative therapy and coffee morning event, to mark ME Awareness week in May.
Group spokesman Eileen Shoosmith said, its very frustrating and it sometimes feels as though we are easy to dismiss, because we are people with low energy, we continue to struggle on a daily basis, let alone campaigning for a local service we need. It takes its toll and it is not the ideal way to get help, but pacing the work, helps to a great degree.
We were promised a support scheme in Berkshire in 2007, but no-one has contacted us about it since.
We approached the PCT and eventually a needs assessment is taking place, we hope that funding will occur following this.
Miriam
Contact
Reading ME Group is continuing its' campaign for better support services in Berkshire.
The group has hit the world wide web again, with a video on You Tube, calling for ME sufferers to take part in a Primary Care Trust needs assessment and lobby more money to be spent on services.
Members, also held an alternative therapy and coffee morning event, to mark ME Awareness week in May.
Group spokesman Eileen Shoosmith said, its very frustrating and it sometimes feels as though we are easy to dismiss, because we are people with low energy, we continue to struggle on a daily basis, let alone campaigning for a local service we need. It takes its toll and it is not the ideal way to get help, but pacing the work, helps to a great degree.
We were promised a support scheme in Berkshire in 2007, but no-one has contacted us about it since.
We approached the PCT and eventually a needs assessment is taking place, we hope that funding will occur following this.
Miriam
Contact
Monday, 14 April 2008
Patients urged to have needs assessed.
Reading Chronicle 10 April 2008
Campaigners are calling for sufferers of a debilitating illness, to have their needs properly assessed.
People with Fibromyalgia, a condition similar to ME, say they are not being consulted on how it affects them and how services could be shaped, in contrast with a wide reaching consultation on ME by Berkshire West Primary Care Trust.
Lindsey Middlemiss of the West Berks ME and FM Group said: 'As part of our needs assessment to be carried out by the Berkshire Primary Care Trusts, ME patients are being asked, to fill out a short questionnaire, about where they receive information and services, whether they have tried any therapies, and what if anything, helps them feel better, but this has not been extended to include Fibromyalgia. We were pushing for that to happen but it doesn't look likely because of the large number of people involved. We're talking about the tens of thousands of people in Berkshire who suffer with it. It overlaps with ME but they are slightly different. With ME the fatigue is worse and with Fibromyalgia the pain is worse. We get cases of people coming to us and saying that they have been to their doctor, and they don't know where to refer them because there's no specialist care in Berkshire. But we are going to continue to ask questions and get the Berkshire MP's involved'.
Reading East MP Rob Wilson, who has chaired the All Party Parliamentary group on Fibromyalgia for three years said: 'In this country there are fashionable illnesses and unfashionable illnesses and ME is in the headlines and in the media quite frequently and Fibromyalgia isn't. But they are similar in terms of the effect they have on people's lives.
There is no government investment in Fibromyalgia at the moment. I'm not aware of any specialist service/s in Berkshire, but sadly that puts it on a par with many other places'.
ME campaigners welcome the needs assessment in Berkshire and Eileen Shoosmith, of Reading Area ME Support Group, said: 'In recent months, since talking to health services commissioning staff locally, we have found them very responsive to the idea of setting up a much needed specialist service, once they've been able to access, just what will be involved, and providing they can find the money for it.
'Many GP's who care for people who have ME and Fibromyalgiia, feel at a loss, as to how to provide ongoing care at their surgeries. Lots of patients, with these illnesses feel abandoned by the health service, and many are so ill they often cannot summon up the strength to get out of the house to see their doctors, for even basic help to improve their worst symptoms'.
Berkshire West PCT spokewomen Camilla Bashaarat said: 'Patients with Fibromyalgia, may have some symptoms in common with those seen with ME, but again research is yet to identify what the link, if any is between these conditions'.
Campaigners are calling for sufferers of a debilitating illness, to have their needs properly assessed.
People with Fibromyalgia, a condition similar to ME, say they are not being consulted on how it affects them and how services could be shaped, in contrast with a wide reaching consultation on ME by Berkshire West Primary Care Trust.
Lindsey Middlemiss of the West Berks ME and FM Group said: 'As part of our needs assessment to be carried out by the Berkshire Primary Care Trusts, ME patients are being asked, to fill out a short questionnaire, about where they receive information and services, whether they have tried any therapies, and what if anything, helps them feel better, but this has not been extended to include Fibromyalgia. We were pushing for that to happen but it doesn't look likely because of the large number of people involved. We're talking about the tens of thousands of people in Berkshire who suffer with it. It overlaps with ME but they are slightly different. With ME the fatigue is worse and with Fibromyalgia the pain is worse. We get cases of people coming to us and saying that they have been to their doctor, and they don't know where to refer them because there's no specialist care in Berkshire. But we are going to continue to ask questions and get the Berkshire MP's involved'.
Reading East MP Rob Wilson, who has chaired the All Party Parliamentary group on Fibromyalgia for three years said: 'In this country there are fashionable illnesses and unfashionable illnesses and ME is in the headlines and in the media quite frequently and Fibromyalgia isn't. But they are similar in terms of the effect they have on people's lives.
There is no government investment in Fibromyalgia at the moment. I'm not aware of any specialist service/s in Berkshire, but sadly that puts it on a par with many other places'.
ME campaigners welcome the needs assessment in Berkshire and Eileen Shoosmith, of Reading Area ME Support Group, said: 'In recent months, since talking to health services commissioning staff locally, we have found them very responsive to the idea of setting up a much needed specialist service, once they've been able to access, just what will be involved, and providing they can find the money for it.
'Many GP's who care for people who have ME and Fibromyalgiia, feel at a loss, as to how to provide ongoing care at their surgeries. Lots of patients, with these illnesses feel abandoned by the health service, and many are so ill they often cannot summon up the strength to get out of the house to see their doctors, for even basic help to improve their worst symptoms'.
Berkshire West PCT spokewomen Camilla Bashaarat said: 'Patients with Fibromyalgia, may have some symptoms in common with those seen with ME, but again research is yet to identify what the link, if any is between these conditions'.
Monday, 7 April 2008
ME sufferers are asked to speak up.....
Reading Chronicle Thursday 3rd April 2008
Thousands of people with Chronic Fatigue Syndrome (ME) will be asked for their views on the care and services they receive.
As part of a needs assessment by Berkshires' Primary Care Trust (PCT's), ME patients are being asked to fill in a questionnaire, about where they receive information and services, whether they have tried any therapies, and what helps them feel better.
Eileen Shoosmith, from the Reading Area ME Support Group said 'In recent months, we have found health service staff responsive to the idea of setting up a much needed specialist service for ME sufferers, but they first need to access, just what will be involved and find out if they can find the money for it.
'Many GP's who care for ME sufferers, or the similar disease Fibromyalgia (FM), feel at a loss,as to how to provide ongoing care at their surgeries.
Lots of patients with these illnesses feel abandoned by the health service, and many are so ill, they often can't summon up the strength, to get out of the house, to see their doctors, for even basic help to improve their worst symptoms'.
Communications between patient groups, and PCT's have been going on since 2002, with meetings since 2006.
The Reading Area ME Support Group,which stretches across East Berkshire, is now working with West Berkshire ME and FM group, as well as Reading and Wokingham FM support groups.
An estimated total of 40,000 people in Berkshire suffer from ME and FM, although there is no specialist treatment for either condition in the area.
People with ME or FM, can download a needs assessment questionnaire by clicking here or contact Eileen Shoosmith on 01189 786480.
The questionnaire, should be completed and returned by 18th April 2008.
Thousands of people with Chronic Fatigue Syndrome (ME) will be asked for their views on the care and services they receive.
As part of a needs assessment by Berkshires' Primary Care Trust (PCT's), ME patients are being asked to fill in a questionnaire, about where they receive information and services, whether they have tried any therapies, and what helps them feel better.
Eileen Shoosmith, from the Reading Area ME Support Group said 'In recent months, we have found health service staff responsive to the idea of setting up a much needed specialist service for ME sufferers, but they first need to access, just what will be involved and find out if they can find the money for it.
'Many GP's who care for ME sufferers, or the similar disease Fibromyalgia (FM), feel at a loss,as to how to provide ongoing care at their surgeries.
Lots of patients with these illnesses feel abandoned by the health service, and many are so ill, they often can't summon up the strength, to get out of the house, to see their doctors, for even basic help to improve their worst symptoms'.
Communications between patient groups, and PCT's have been going on since 2002, with meetings since 2006.
The Reading Area ME Support Group,which stretches across East Berkshire, is now working with West Berkshire ME and FM group, as well as Reading and Wokingham FM support groups.
An estimated total of 40,000 people in Berkshire suffer from ME and FM, although there is no specialist treatment for either condition in the area.
People with ME or FM, can download a needs assessment questionnaire by clicking here or contact Eileen Shoosmith on 01189 786480.
The questionnaire, should be completed and returned by 18th April 2008.
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