Reading Chronicle
An ME sufferer will be among the thousands pounding the streets of London on Sunday, representing Reading in the London Marathon. Karen Roach was diagnosed with ME in January last year and speaking in the last few days before the big race admitted the nerves were kicking in.
The 41-year-old, who is a member of Reading Area ME Group said: “I’m definitely starting to worry a bit about it now, but I’ve done a 10K run for cancer, and two half marathons so I hope it will be okay.”
Karen has been training five days-a-week in preparation for the marathon, as well as reading articles from running magazines. She said: “I’ve gathered a lot of tips on pacing myself as well as listening to my body, watching my diet and incorporating rest. You have to be disciplined and persevere, but hopefully I should be fine.”
Karen is an account executive with Pricewaterhouse Coopers in London, and said that while ME has forced her to reassess her life, she is able to keep on top of it through her lifestyle.
She said: “I’m not cured, but I can manage my illness. The experience of chronic fatigue has taught me to slow down and take stock. It has made me into a stronger person and my faith has also played a central role in my progress and motivation to run the marathon because I believe God still heals today.
“Sometimes when you get up in the morning you really don’t feel like running, but after a few miles your body remembers what it’s supposed to be doing.”
Karen is hoping to raise £1,500 for the charity Action for ME, and Reading Area ME Support Group spokeswoman described her as “an inspiration”.
She said: “Karen proves that having ME does not mean the end of your world, but a change, and that one can build a new life from it.”
For more on Karen’s fundraising efforts visit www.justgiving.com/karenroachlfm09.
ME FACTBOX
ME stands for Myalgic Encephalomyelitis
Symptoms of the neurological disease include muscle pain and intense physical or mental exhaustion
In some patients it starts after an infection, but there can also be environmental and traumatic triggers
ME/Chronic Fatigue Syndrome affects around 150,000 people in the UK, 25% are severely disabled with some house/bed-bound. The cause is still unknown and no cure or effective treatment has yet been found
For more information visit www.meassociation.org.uk
Tuesday, 12 May 2009
Friday, 20 February 2009
ME victims lobby court
Reading Chronicle 12th February 2009
Reading ME sufferer Elaine Smith will be among those battling at the High Court on Wednesday and Thursday at a judicial review of National Institute of Clinical Excellence (Nice) guidelines on the condition.
She said: “There is a wide range of evidence about the biological nature of ME, but the treatments being recommended in the Nice guidelines are unfit for purpose.
“The supporters of this review urge as many people as possible with ME or their carers or friends to show their support by attending the High Court if possible.”
More details can be found here .
Miriam
Reading ME sufferer Elaine Smith will be among those battling at the High Court on Wednesday and Thursday at a judicial review of National Institute of Clinical Excellence (Nice) guidelines on the condition.
She said: “There is a wide range of evidence about the biological nature of ME, but the treatments being recommended in the Nice guidelines are unfit for purpose.
“The supporters of this review urge as many people as possible with ME or their carers or friends to show their support by attending the High Court if possible.”
More details can be found here .
Miriam
Monday, 22 September 2008
PM tells Miriam how things stand
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.”
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.”
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.
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