Local Media Coverage

23rd April 2009: It’s all about ME!

2009-05-12T05:23:00.001-07:00

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

ME victims lobby court

2009-02-20T06:41:00.000-08:00

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

PM tells Miriam how things stand

2008-09-22T05:18:00.000-07:00

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.”

Lifeline for ME Families

2008-08-27T07:17:00.000-07:00

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

ME Sufferer Seeks Research

2008-08-26T10:13:00.000-07:00

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

Wimpey magic wand

2008-07-24T03:31:00.000-07:00

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

ME sufferers can meet MP

2008-07-07T05:30:00.000-07:00

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.

Reading Group appears on You Tube again.

2008-06-20T01:43:00.000-07:00

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

Patients urged to have needs assessed.

2008-04-14T04:01:00.000-07:00

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'.

ME sufferers are asked to speak up.....

2008-04-07T03:54:00.000-07:00

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.

Public support needed to help ME and FM groups’

2007-12-05T03:44:00.000-08:00

Reading Chronicle 30 November 2007

Support groups which have joined forces to campaign for improvements to ME and Fibromyalgia services in Berkshire are now appealing to the public for their help.

The Reading Area ME Support Group, the West Berkshire ME and FM Group and the Reading Fibromyalgia Support Group, believe that an increase in public support will really make a difference to their campaign.

They have organised a petition as well as encouraging people to write to their MPs to ask them to ensure that appropriate provisions are made for the diagnosis, management and treatment of ME and FM on the NHS within Berkshire.

Eileen Shoosmith from the Reading Area ME Support Group said: “We have been campaigning for ME and FM services in Berkshire for a number of years now and we have not got any”.

“Clinics have been set up in other areas of the country however, but our Primary Care Trust was not successful so it is important that we gain as much local support for the services as possible in order to help back the PCT when they next try again”.

“The services we are campaigning to get set up are vital and will go a long way to offering relief to those people living with either of the conditions”.

The groups held talks with the Berkshire West Primary Care Trust last month with regards to restarting the pilot service for ME and FM sufferers that fell through earlier in the year due to staff shortages.

Commissioners from the PCT will soon meet the groups to discuss the possible future services as well as liaising with Berkshire East PCT who are currently involved in a Needs Assessment of the area.

ME (Myalgic Encephalopathy), also known as Chronic Fatigue Syndrome, is a neurological and multi-system condition characterised by a host of symptoms including extreme fatigue and muscle or join pain.

Fibromyalagia Syndrome is also a neurological condition with very similar symptoms although muscle or joint pain is usually the most dominant.

There are in estimated 1,000 – 2,000 people suffering from ME in Berkshire as well as 3,500 – 22,500 Fibromyalagia sufferers.

To get involved in the campaign, please click here, thanks.

Call for ME Services

2007-10-23T04:39:00.000-07:00

Reading Chronicle 18th October 2007

Reading Area ME Support Group, will be speaking about a campaign to get Chronic Fatigue Syndrome/ME Services in Berkshire.

The presentation will take place, at the West Berkshire ME and FM group Awareness Event tomorrow (Friday).

In addition to several talks,there will be information stalls, crafts and refreshments.

A petition will also be launched, to try to improve services, for sufferers of ME and FM.

The event is at 4pm. in the Baptist Church Hall, Cheap Street, Newbury.

Its all about M.E

2007-10-01T02:20:00.001-07:00

Reading Chronicle - 27th September 2007

A world M.E and Fibromyalgia prayer and meditation day, has been launched to encourage members of the public, across the country to take time out, and think about sufferers, between midday and 12.30pm, on the first Monday of each month.

Details of the day, can be found on the Reading Areas' ME Groups' support new blog.

A score to settle

2007-09-20T07:27:00.001-07:00

Reading Chronicle 13th September 2007

A singer-songwriter whose music has helped her cope with ME is celebrating
success in a national competition. Sam Shearsmith, of West Reading, finished
in the top 20 of The UK Songwriting Contest with Life's Like This.

She said: "It is about my experiences, having to keep going and how life is
like a roller coaster. I was diagnosed with ME in 2002 and singing has been
my lifeline. It was amazing to do so well in my first competition especailly
as there were 5,000 entrants."

The 35-year-old, who lives off Oxford Road, began singing in 2005 and has
produced a three track demo. She said: "Having ME has given me time to think
about what I wanted to do. I was feeling very isolated but focusing on music
and teaching myself the guitar has really helped me through it.

To begin with I was so lonely and it's given me something to look forward
to."

Sam was forced to give up working as a nanny when she was diagnosed but she
is now writing new material. She hopes to set up a studio at her home and to
get some gig dates.

To hear Sam's music visit My Space
To find out more about ME visit ME Association

Intrepid quartet tackle Monster Challenge in bid to raise £1000.00

2007-09-14T08:05:00.000-07:00

Reading Chronicle 6th September 2007

Four Reading Men, took a Monster Challenge, around Loch Ness, to raise money for victims of ME.

John Drummond, Mark Shoosmith, Matt Jordan, and Chris Cox, joined 250 teams, from across the country in a 10K run and a 20K cycle, around the Scottish shores on Sunday, as part of the First Monster Challenge.

The men who work together at the Reading based, Transportation Claims, which is part of the transport company First Direct, I hoping to raise £1000.00 for charity.

They are collecting cash for Chronic Fatigue Syndrome Research Foundation, which carries out research into CFS/ME, as both Mark and Chris' mothers suffer from the condition.

They are also supporting the National Society Association for Colitis and Crohns' Disease UK, because Matts' girlfriend is battling the disease.

Chris 23, who lives in Mallory Avenue, Caversham said "It was nice supporting something, that is close to our hearts".

"It was certainly a challenge. Neither of these charities, seem to be well known, but there are a lot of people, who suffer from both illnesses. They could do with a bit of a profile.