From the monthly archives: August 2011

University of Calgary records serious health complications in MS patients

By On August 26, 2011 · Leave a Comment · In Latest news, research, Uncategorized

Researchers at the University of Calgary have documented some serious complications suffered by multiple sclerosis patients who travelled outside of Canada to undergo a controversial treatment for their disease.

Many MS patients have travelled overseas to find clinics willing to provide chronic cerebrospinal venous insufficiencytreatment, which uses balloon angioplasty to open blocked veins [...]

Researchers at the University of Calgary have documented some serious complications suffered by multiple sclerosis patients who travelled outside of Canada to undergo a controversial treatment for their disease.

Many MS patients have travelled overseas to find clinics willing to provide chronic cerebrospinal venous insufficiencytreatment, which uses balloon angioplasty to open blocked veins in the neck. Italian physician Paolo Zamboni was the first to suggest that blocked neck veins may be linked to MS and use venous angioplasty to unblock them.

Some patients have reported that the procedure has drastically improved their symptoms, but some studies have called into question its effectiveness.

The Calgary study followed five patients who had the so-called liberation therapy and were treated in Calgary hospitals in October and November of last year after complications from the procedure.

The complications included clot formation within stents, stent migration, significant hemorrhage, cranial nerve damage and cerebral vein thrombosis, which is clots in the veins of the brain. Zamboni has always warned against the use of stents.

The lead author of the paper, Dr. Jodie Burton, admits it’s that it is difficult to draw conclusions since there were only five patients involved and it’s not known how many Canadians have travelled to locations such as Mexico, India, the United States and Poland to have the procedure done.

“Every pro has a con. I think the issue is informed consent so you fully understand what the risks are when you undertake something,” said Burton, a clinical assistant professor in the department of clinical neurosciences.

“It’s important to make sure when we expose patients to potential risks we’re aware of what those are as best we can up front and those are tempered by the potential gains.”

The information was published this week in the Canadian Journal of Neurological Sciences.

Last month, a Calgary man revealed that his wife died after having the treatment at a California clinic.

The federal government plans to fund a preliminary clinical trial of liberation therapy, but has warned it could be years before it would be widely available in Canada.

Alberta is conducting its own web-based study which will consult with MS patients as a precursor to clinical trials.

Burton said the seriousness of the complications should serve as a “cautionary tale” to anyone considering having the procedure done and for physicians who may be required to provide medical care to future patients.

“I understand this is a group of people who have not the greatest set of options and are in desperate need. I totally understand that and I can appreciate the interest and the attention to the topic,” said Burton.

“I’m still worried. I think the issue is people are going for procedures that we know are not benign. They’re not having the procedures done in this country so it’s hard to know exactly what’s being done.”

Source: Wiinepeg Free Press © 2011 Winnipeg Free Press (25/08/11)

Enhanced by Zemanta
Tagged with: • • • • • • • •
 

New research into MS gets go ahead

By On August 26, 2011 · Leave a Comment · In Latest news, research, Uncategorized

The go-ahead has been given for further research into a procedure which could relieve symptoms for some people who have multiple sclerosis.

The procedure, called percutaneous venoplasty, aims to improve blood flow from the brain by using a small inflatable balloon or stent to widen narrowed veins in the neck which carry oxygen-depleted blood.

Multiple [...]

The go-ahead has been given for further research into a procedure which could relieve symptoms for some people who have multiple sclerosis.

The procedure, called percutaneous venoplasty, aims to improve blood flow from the brain by using a small inflatable balloon or stent to widen narrowed veins in the neck which carry oxygen-depleted blood.

Multiple sclerosis is the most common disabling neurological condition affecting young adults. Around 100,000 people in the UK have MS.

The National Institute for Health and Clinical Excellence (Nice) is proposing in its draft guidance that the procedure should be used in the context of research only, so further evidence on its safety and clinical efficacy can be developed.

It has been suggested that there could be a link between narrowed veins – called chronic cerebrospinal venous insufficiency, or CCSVI – and the progression of MS.

Professor Bruce Campbell, chairman of the independent committee that develops Nice’s interventional procedures guidance, said: “Multiple sclerosis can be a distressing and disabling condition with a lack of effective treatments.

“This means that it is really important to find out whether percutaneous venoplasty is clinically effective and safe for use in the NHS.

“Based on the existing evidence, we believe that clinicians should only consider offering percutaneous venoplasty as a treatment option for people with MS who fit the diagnostic criteria for CCSVI, as part of structured clinical trials.

“In particular, we would welcome controlled research comparing percutaneous venoplasty against ‘sham venoplasty’, in the same way that drug treatments are compared to a placebo.

“This is so that we can learn more about whether venoplasty works and for how long. Further research could also improve the understanding of the relationship between MS and CCSVI, as this is very unclear at present.”

Source: The Press Association © 2011 The Press Association (25/08/11)

Enhanced by Zemanta
Tagged with: • • • • • • •
 

Epstein–Barr virus in the MS brain: a controversial issue

By On August 26, 2011 · 1 Comment · In Latest news, research, Uncategorized

Report on a focused workshop held in the Centre for Brain Research of the Medical University of Vienna, Austria.

Summary

Recent epidemiological and immunological studies provide evidence for an association between Epstein–Barr virus infection and multiple sclerosis, suggesting a role of Epstein–Barr virus infection in disease induction and pathogenesis.

A key question in [...]

Report on a focused workshop held in the Centre for Brain Research of the Medical University of Vienna, Austria.

Summary

Recent epidemiological and immunological studies provide evidence for an association between Epstein–Barr virus infection and multiple sclerosis, suggesting a role of Epstein–Barr virus infection in disease induction and pathogenesis.

A key question in this context is whether Epstein–Barr virus-infected B lymphocytes are present within the central nervous system and the lesions of patients with multiple sclerosis.

Previous studies on this topic provided highly controversial results, showing Epstein–Barr virus reactivity in B cells in the vast majority of multiple sclerosis cases and lesions, or only exceptional Epstein–Barr virus-positive B cells in rare cases.

In an attempt to explain the reasons for these divergent results, a workshop was organized under the umbrella of the European Union FP6 NeuroproMiSe project, the outcome of which is presented here.

This report summarizes the current knowledge of Epstein–Barr virus biology and shows that Epstein–Barr virus infection is highly complex.

There are still major controversies, how to unequivocally identify Epstein–Barr virus infection in pathological tissues, particularly in situations other than Epstein–Barr virus-driven lymphomas or acute Epstein–Barr virus infections.

It further highlights that unequivocal proof of Epstein–Barr virus infection in multiple sclerosis lesions is still lacking, due to issues related to the sensitivity and specificity of the detection methods.

Hans Lassmann, Gerald Niedobitek, Francesca Aloisi, Jaap M. Middeldorp and the NeuroproMiSe EBV Working Group

Source: Brain Copyright © 2011 Guarantors of Brain (25/08/11)

Enhanced by Zemanta
Tagged with: • • • • • • •
 

T cells hold more clues in the MS Epstein-Barr virus mystery

By On August 25, 2011 · 2 Comments · In Latest news, research, Uncategorized

Findings from an MS Research Australia funded project have been published in the International Journal of Neurology, Neurosurgery & Psychiatry by Prof Michael Pender and his team. The researchers conducted research on the way that the immune system attacks cells infected by Epstein-Barr virus (EBV) and how this may influence MS.

There is a great [...]

Findings from an MS Research Australia funded project have been published in the International Journal of Neurology, Neurosurgery & Psychiatry by Prof Michael Pender and his team. The researchers conducted research on the way that the immune system attacks cells infected by Epstein-Barr virus (EBV) and how this may influence MS.

There is a great deal of scientific evidence showing that EBV (also known as glandular fever or infectious mononucleosis) has a role in MS susceptibility. After infection with EBV, the virus remains in the body for a long time and can be found in infected B cells, one of a number of different types of white blood cells. It has been shown that a certain group of white cells called CD8 T cells are important in eliminating these virus-infected cells. Research has shown that people with MS have less of these special CD8 T cells in their blood.

In the newly published research, Prof Pender and his colleagues at the University of Queensland, School of Medicine have studied the blood from 64 people with MS and compared it to age and sex matched controls without the disease. Using a technique called flow cytometry, which allows rapid study of large numbers of white cells, they have investigated the relationship between CD8 T cells and Epstein-Barr virus. They confirmed that people with MS have significantly less CD8 T cells and that the number of special CD8 T cells gets lower with age, something that did not happen in the controls. The scientists believe that people with MS may have a genetic deficiency which means they are unable to make a sufficient CD8 T cell immune response. These findings could lead to new drug treatments or vaccinations to control or prevent Epstein-Barr infection leading to prevention of MS.

More details about Prof Pender’s research can be found here.

Courtesy of MSRA (MS Research Austrailia)

Related articles
Enhanced by Zemanta
Tagged with: • • • • • • • • • •
 

Hope as Scientists take a step towards finding MS Cure thanks to OZ family.

By On August 25, 2011 · Leave a Comment · In Latest news, research, Uncategorized

Scientists take a step towards finding MS

A breakthrough on the neurological disease multiple sclerosis has been made thanks to cooperative efforts of 250 researchers around the world. The scientists have verified 57 genes linked to the illness and their findings were last week [...]

Scientists take a step towards finding MS

A breakthrough on the neurological disease multiple sclerosis has been made thanks to cooperative efforts of 250 researchers around the world. The scientists have verified 57 genes linked to the illness and their findings were last week published in the journal Nature. A Sydney couple who lost their daughter to MS helped to fund some of the research.

Ryan Mclaughlin would like to share this truly inspiring video that has really struck accord as his own mum’s health has taken such a deep decline this year this video and inspiring story gives hope, but it also shows the reality of MS and shows why we must all do more has made him even more determination to never stop fighting to help end MS .

‘I would like to thank the Langsford family for their tireless dedication’  - Ryan Mclaughlin and the Mclaughlin family .

This video is only available on the 7.30 ABC News website and we urge every person to watch it  by clicking Here or click the Image above

Australian Broadcasting Corporation

Broadcast: 11/08/2011

Reporter: Natasha Johnson

Transcript

LEIGH SALES, PRESENTER: One Australian family is absolutely thrilled tonight at news that an international team of scientists has made a major step forward in finding a cure for multiple sclerosis.

Roy and Carol Langsford lost their daughter to the devastating disease and it’s partly through donations they’ve made that this research has been able to go ahead.

As Natasha Johnson reports, the Langsfords promised their daughter Trish that they’d save others from the terrible suffering she endured.

NATASHA JOHNSON, REPORTER: This is Trish Langsford as her family likes to remember her: a talented young cricketer who captained the Australian women’s under-23 team.

And this is what multiple sclerosis did to her just as her life was taking off.

CAROL LANGSFORD, MOTHER: Trish went from being a happy, vibrant, young athlete with world at her feet to not many years later being in the nursing home, completely paralysed, being fed with a tube, four-hourly morphine and not being able to communicate, and it was just so sad.

NATASHA JOHNSON: Diagnosed at the age of 23 with an aggressive form of the neurological disease, Trish Langsford experienced a brutally rapid decline. No medical treatment could stem its advance and three years later she was admitted to a nursing home. She languished there for four years, understanding everything, but unable to speak a word.

The few highlights were the unwavering love of her family and receiving the True Blue Award for a NSW cricketer who played with dedication, excellence and courage.

ROY LANGSFORD, FATHER: She resigned herself to fact that she had it and she was going to be positive about it and beat it.

NATASHA JOHNSON: But she couldn’t beat it, and Trish Langsford died in 2002 at the age of 30, setting her grief-stricken parents on a noble quest.

ROY LANGSFORD: We told Trish at the time that we were going to find a cure somehow. And although we knew that it was never going to help her, that we had to do something, and that was our promise to Trish.

CAROL LANGSFORD: When you watch what Trish went through, and four and a half years in that nursing home, it was so cruel that we just felt we wanted to save others from going through what Trish went through. And that’s why passionate about doing it because no-one should have to go through that, no-one.

NATASHA JOHNSON: And so began the Trish Foundation. A charity run from the study of the Langsford’s modest home charged with raising money for research into a cure or preventative treatment.

Through balls, golf days and trivia nights, they’ve raised $2 million over 10 years for MS Research Australia and now their investment is paying off in a spectacular way.

Four years ago, the Trish Foundation donated $200,000 in seed funding to immunologist Professor Graeme Stewart and his team at Westmead Millennium Institute to join an enormous international consortium of 250 researchers in 15 countries who have achieved a major MS breakthrough.

GRAEME STEWART, WESTMEAD MILLENIUM INSTITUTE: It’s a landmark for MS research. People often talk about the joy of science; this week is very clear in my mind what the joy of science is.

NATASHA JOHNSON: In one of the largest human genetic studies ever undertaken, DNA blood samples were collected from 27,000 people, including 1,000 Australians with MS. By screening their DNA, researchers confirmed 57 genes associated with multiple sclerosis.

GRAEME STEWART: Each one of these genes is a window into what might cause the disease. So we now have a road map for scientists around the world to follow. We are moving closer and closer to the cause of MS. With the cause comes the cure.

NATASHA JOHNSON: The research was published in the prestigious scientific journal Nature, but Carol and Roy Langsford were among the first to receive the news.

CAROL LANGSFORD: I was just over the moon. I was just so thrilled.

NATASHA JOHNSON: The remarkable pattern of the genes has confirmed that it’s a disease of the immune system and shown that the reason people get MS is due to subtle inherited differences in immune function which make them more susceptible to environmental triggers.

GRAEME STEWART: We hope that genes will lead to studies that will help us pin down the environmental factors. It tells us where the money lies in developing new treatments.

NATASHA JOHNSON: One of those environmental factors is increasingly looking like lack of vitamin D, which comes mostly from the sun. Two of the MS genes control the metabolism of vitamin D, which is important for immune system.

GRAEME STEWART: There is an extremely strong case for a trial of giving people sizeable doses of vitamin D from the time of their first episode of multiple sclerosis.

NATASHA JOHNSON: Professor Stewart has dedicated nearly 40 years to gene research, and lately the Langsfords have been an inspiration.

GRAEME STEWART: They’re part of why I get up in the morning and do the things I do.

NATASHA JOHNSON: So dedicated are they to finding a cure, the Langsfords have even kept their daughter’s hair brush for future genetic research.

But tonight there’s much cause for celebration. There may be a place missing at this family dinner, but a scientific win eases a little the aching loss.

ROY LANGSFORD: If help in this field is contributing to the finding of a cure for MS then it’ll be all worthwhile and Trish’s life lost to MS won’t be wasted.

LEIGH SALES: Roy and Carol Langsford certainly aren’t stopping now; they’re already planning their next fundraiser.

Natasha Johnson reporting.

www.msaustralia.org.au
www.trishmsresearch.org.au
http://www.wmi.org.au
www.msra.org.au

 

Enhanced by Zemanta
Tagged with: • • • • • • •
 

NHS postcode lottery keeps £11-a-day drugs from MS victim

By On August 24, 2011 · Leave a Comment · In Latest news, research, Uncategorized

Multiple sclerosis patients in London are being denied a pain-relieving drug by the NHS. 

More than half a dozen trusts in the capital are advising doctors not to prescribe Sativex, according to the MS Society.

The drug can relieve spasms and muscle stiffness which, left untreated, lead to falls and fatigue.

It has been licensed [...]

NHS logo

Image via Wikipedia

Multiple sclerosis patients in London are being denied a pain-relieving drug by the NHS. 

More than half a dozen trusts in the capital are advising doctors not to prescribe Sativex, according to the MS Society.

The drug can relieve spasms and muscle stiffness which, left untreated, lead to falls and fatigue.

It has been licensed by the Medicines and Healthcare products Regulatory Agency (MHRA) but health bosses are either refusing to fund the £11-a-day treatment or restricting its use, says the MS Society. Frustrated patients are being told to “wait and see” by health bosses.

They include Peter Frost, 57, who can no longer walk after being diagnosed with MS five years ago. His partner and full-time carer Betty Redpath have been trying to access Sativexsince June last year.

Ms Redpath told the Standard: “Peter is a victim of a postcode lottery. He’s getting worse and worse – he has no life and I hate seeing him in pain.” MS Society spokesman Jayne Spink said the charity has been overwhelmed with calls from people refused Sativex.” She added: “It seems to be a problem right across the capital.”

South West London primary care trust said it was unable to comment on Mr Frost’s case.

Source: Evening Standard © 2011 ES London Limited (23/08/11)

 

 

 

Enhanced by Zemanta
Tagged with: • • • • • • • • •
 

DOH & SACN to review evidence on vitamin D

By On August 20, 2011 · 3 Comments · In Latest news, research, Uncategorized

BBC News reports on an editorial in the Journal of Medical Screening in which the author notes an increase in cases of rickets in infants and children on both sides of the Atlantic as a result of vitamin D deficiency in the mothers during pregnancy. The editorial describes cases [...]

BBC News reports on an editorial in the Journal of Medical Screening in which the author notes an increase in cases of rickets in infants and children on both sides of the Atlantic as a result of vitamin D deficiency in the mothers during pregnancy. The editorial describes cases of seizures, heart failure and rickets in children whose mothers were vitamin D deficient. The author suggests that it is time to investigate whether we should be screening pregnant women with a blood test, focussing initially on those most at risk. The BBC story notes that people with darker skin and women, who cover up for cultural or religious reasons, are at particular risk of deficiency.

 

The BBC article also highlights a study carried out in inner city Birmingham which found that almost one in two Asian women were vitamin D deficient. The level was found to be one in three in the wider Asian community, one in four in the black population and one in eight among Caucasians. Speaking to BBC news, one of the study authors said that some local GPs are already screening pregnant women from the Asian community, although no formal protocol exists. He said, “Screening in selected populations is currently the way forward, but clearly it is very difficult for the NHS to test everyone. We are seeing a big increase in demand from the ‘worried well’.”

A spokesperson for the Department of Health (DH) in England told BBC News: “All pregnant women are advised to take Vitamin D supplements. Our priority is to ensure health professionals provide consistent advice and implement the current recommendations.” The DH has asked the scientific advisory committee to review the evidence on vitamin D requirements for different population group

Teenager Ryan McLaughlin and MS campaigner  recently attended a meeting in Manchester with health officials to discuss vitamin D and confirms that t the UK Government will proceed with a national  supplementation program via the health start scheme in the north of England.

Manchester,  Liverpool and the northwest regions  have already began giving FREE vitamin d supplements to every pregnant mother and they have had to find the cash to do it from admin budgets sadly while Scotland  seems to be stalling due to the costs.

 

Related articles
Enhanced by Zemanta
Tagged with: • • • • • • •
 

US Senator sells out the health of America

By On August 18, 2011 · Leave a Comment · In Latest news, politics, Uncategorized

United States Senator Dick Durbin has introduced legislationthat could essentially slaughter the entire dietary supplement industry.

Durbin presented S. 1310, “The Dietary Supplement Labeling Act,” under the pretenses of improving the “safety of dietary supplements.”

However, the bill [...]

The man who sold out American health

Image via Wikipedia

United States Senator Dick Durbin has introduced legislationthat could essentially slaughter the entire dietary supplement industry.

Durbin presented S. 1310, “The Dietary Supplement Labeling Act,” under the pretenses of improving the “safety of dietary supplements.”

However, the bill actually grants the FDA overreaching authority over the approval and disapproval of dietary supplements and supplement ingredients.

If passed, the legislation will require manufacturers to register dietary supplement products with the FDA and change the labels on the supplements to meet federal requirements.

In the meantime, the FDA would decide, without rule or reason and in correlation with the Institute of Medicine (IOM), which dietary supplements and dietary supplements ingredients are “safe,” and would make a self-defined list of “dietary supplements” or “supplement ingredients” that need to be regulated by the FDA.

Dr. Tammera J. Karr says that duo has an agenda beyond protecting consumer safety:

“Given the FDA’s profound bias against supplements, and the skewed, anti-science recommendations of the IOM’s recent vitamin D report, these are hardly trustworthy sources.”

A petition letter against the act shares Karr’s belief that “consumer safety” is not the motivation behind the act and is, frankly, an excuse. It reads:

“Dietary supplements are already among the safest consumer products around. In recent years, the Centers for Disease Control have reported zero deaths from consumption of dietary supplements and during the last 25 years, more deaths have been reported from bee stings, lightning strikes, or horse-riding accidents than from supplements. This compares extremely favorably to FDA-approved drugs, licensed hospitals, and licensed medical doctors that account for hundreds of thousands of deaths a year! Clearly, there is no need for this legislation.”

In her article, Karr quotes the Centers for Disease Control and Prevention (CDC) and the national Poison Data System (NPS) which also state that “botanicals and dietary supplements are the safest products we can use for our health.”

So, not surprisingly, this is merely another example of government not being transparent with the people and pursuing its own agenda.

This legislation, Karr says, will significantly damage the dietary supplement industry and stifle consumers’ access to supplements, all while increasing prices and health care costs:

“If allowed to stand, over time this will drastically reduce the number of supplements and supplement potencies, raise prices substantially, injure our ability to take care of our health, raise health care costs, stifle supplement innovation, nutrition research, and cost millions of jobs….If the bill is passed, both the FDA and the IOM can make it all up as they go. Their judgments can be completely arbitrary.”

The legislation has been referred to the Senate Health, Education, Labor, and Pensions Committee for further overview.

Hopefully that committee will not continue Senator Durbin and the FDA’s anti-consumer campaign.

 

Enhanced by Zemanta
Tagged with: • • • • • • •
 

MS breakthrough: Vitamin D directly terminates production of disease-causing protein

By On August 17, 2011 · 1 Comment · In Latest news, research, Uncategorized

Mechanism suggests a potential new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases such as rheumatoid arthritis, type 1 diabetes, eczema and psoriasis.

For years scientists have noted an association between levels of vitamin D in a person’s body and the person’s ability [...]

Mechanism suggests a potential new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases such as rheumatoid arthritis, type 1 diabetes, eczema and psoriasis.

For years scientists have noted an association between levels of vitamin D in a person’s body and the person’s ability to resist or minimize the effects of multiple sclerosis (MS) but didn’t understood the mechanism involved. Until now.

New breakthrough research by a collaborative team at UMDNJ-New Jersey Medical School and Stanford indicates that vitamin D directly terminates the production of a disease-causing protein.

As the investigators outline in their report, published in the September issue of Molecular and Cellular Biology (“1,25-Dihydroxyvitamin D3 ameliorates Th17 autoimmunity via transcriptional modulation of interleukin-17A” ):

• During MS (“EAE” in mice), a damaging protein called interleukin-17 (IL-17) is produced by immune cells in the brain.

• The research team found that after vitamin D binds to its receptor, the receptor parks itself on the gene that encodes IL-17.

• By doing so, the vitamin D receptor occupies a site normally reserved for a protein called NFAT, which is required to turn the IL-17 gene on.

• The gene stays off and IL-17 levels plummet.

• At the same time, the vitamin D receptor turns on another gene, whose product generates suppressive T cells that combat the destructive action of their IL-17-producing counterparts.

According to the researchers, led by UMDNJ Prof. Sylvia Christakos, PhD, the mechanism they identified suggests what might be a new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases that might include rheumatoid arthritis, type 1 diabetes, eczema and psoriasis.

Source: ProHealth Copyright © 2011 ProHealth, Inc. (17/08/11)

 

Enhanced by Zemanta
Tagged with: • • • • • • • • • • • • •
 

We listened and we delivered for the good of MS

By On August 15, 2011 · Leave a Comment · In Latest news, Uncategorized

 

For the last 3 weeks we have been listening to feedback from the first 250 members and to the Groups from around the world who have joined our social network shineonms.com

We really took into consideration all the comments and emails the most important to us was that some [...]

Redesigned for those with Multiple Sclerosis in mind

 

For the last 3 weeks we have been listening to feedback from the first 250 members and to the Groups from around the world who have joined our social network shineonms.com

We really took into consideration all the comments and emails the most important to us was that some members who have multiple sclerosis struggled to get to grips with using a social network indeed some had never even joined a social network but they did want to meet new friends.

Ryan Mclaughlin the founder of the social network said STOP ‘we need to make sure our MS Members can use the website’ and asked his mum to test it and so so we drew up an action plan and got to work.

It was not easy task and we had to bring in the very best expert’s to help  us and I cant thank the people who gave up weeks and weeks of their time for the cause.

We are not Facebook, Twitter or Myspace  -it’s just our family trying to do some good for the forgotten and we have no funders. I am so very proud as the team have done a totally amazing job and they should be very proud. Our members are totally blown away by the changes because they said we listened to them and that’s enough for me says Ryan.

We totally redesigned the social network to make it user friendly for our MS members, at the same time we also packed in more features and the feedback is tremendous.

It’s not about building up a Brand name to make money – I didnt do this to make money it’s about helping those with MS it’s about listening to people who have been ignored by every government in every country in the world for over 60 years. its about giving the members somewhere they can meet up and socilise with others that understand the reality of living with this disease.  MS is such a lonely disease that sadly even their families truly understand.

Shine on MS is a place to get the latest news and video’s from experts working in the field to help them understand the diseases and we hope to be able to expand that to help the carers and family members get to grip with living with MS – because sadly you don’t get MS until you get MS or your one and only gets it.

Totally Redesigned for our MS members

We have redesigned the social network with MS users in mind and we designed an easy to use menu called ‘Getting Started’.

Getting Help

We heard all your request’s for help with features so we added a easy to understand feature called   ‘Browsing help’.

Live Chat

We moved the ‘Live chat’ on to its own page and you can now access via the ‘getting started’ menu > ‘Chat Here’

If you wish to chat and continue to browse just click the ‘pop out‘ button and you can now chat in one window while continuing to browse the website or use other features.

Free Blog

We gave every member a free blog and to save our members having to try and set it a blog up and follow tedious instructions we sorted that out and we done all the work so now members can access the blog directly from their profile in just one click or from the getting started menu and begin blogging to the world and tell the world there own story .

Social Networking

We have added a video tutorial to show members how to  ’Connect to twitter ‘ and the video also shows how to connect with other social networks Including facebook plus how to make logging in easier with facebook twitter, gmail etc.

We also recommend installing apps for twitter such as Twitter Tracker or Tweet tub they are free just click add apps from your profile they will appear at the bottom of your profile page (MYPage)

Profile Pages

All members can also access 100′s of Free application’s including seesmic desktop 2 & Hootsuite that now integrates directly with our network and we’ve added even more cool application’s.

Just For Fun

We added 1000′s of Games for a little fun you can access them via the ‘Getting Started” menu. After all in some studies have showen games can help to  improve cognitive function so get playing keep the brain active and have some fun.

 

Email

Now you get all your email from in the network delievered on your profile – no need for switiching between all those windows now just install the app on your ‘MYPAGE’ to easily set it up.

Group’s

We improved the groups sections and we are preparing tutorials for group admins. We will continue listening so that our social network will be the place to be for the MS Community and for our members to learn about alll the the Latest MS News and the place get all the latest reseach to help you understand the disease.

Marketing

When we decided to redesign we put the brakes on our marketing program we had a lot of work to do and its been a massive job delivered in record time, now the work is complete well switch it back on and start getting more members so we can develop it further.

Always listening

The main design and layout updates are now complete and we have some more features to announce very soon as well as some new tools plus a new ‘Learning Academy’  to be announced very shortly.

 

Related articles
Enhanced by Zemanta
Tagged with: • • • • • • • • • • • • • •