The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

Latest News

May 2017

New urine-based biomarker opens a gate to improved tracking of MND

For further information please click here.

April 2017

ALS Reversals – What are they?

Members of the group received an overview of ALS reversals at a recent meeting, further details can be seen below:

ALS Reversals

 

Richard Bedlack

  Richard Bedlack

Rick Bedlack, a neurologist at Duke University in Durham North Carolina, first encountered an ALS reversal in 2011, while leading an ALSUntangled review of Dean Kraft, an energy healer. On Kraft’s website was a video about a lady, who was reported to have been diagnosed with ALS and progressed to where she had lost nearly all movement and was near death. After two years of Kraft’s treatments, she was reported to have recovered most or all her motor function to where she could walk and use her arms normally. Rick was sceptical but nevertheless investigated. Her medical records suggested that her ALS diagnosis was correct and since then, Rick has found 22 additional ALS reversals and has started to focus further research into the area.

There is a precedent for his work: a study of people who are infected with the HIV virus but never get sick showed that many of them have the same genetic abnormality, which causes their resistance and helped researchers create a new drug that works for everyone with HIV. Rick hypothesised that there were 3 possible explanations for ALS reversals:

  1. They did not have ALS in the first place, but rather an ALS-mimic
  2. A genetic factor that made them “resistant” to the disease (like the resistant HIV patients)
  3. Positive effects from a new treatment these people started or from removing some toxic environmental trigger.

Rick has designed two new programs called Replication of ALS Reversals (ROAR) and Study of ALS Reversals (StAR) to help work through these hypotheses and received start-up funding for these from the Larry Vance Hughes ALS Foundation.

In the ROAR program, he is testing the exact same treatments that people with reversals tried in a larger number of patients. In the StAR program, he will be looking for ALS mimics in people with reversals, and will be comparing their genes to people whose ALS does not reverse.

So far Rick has found that ALS plateaus in disease progression and small brief reversals are not uncommon. On the other hand, large reversals lasting a long time are rare; using a US database of ALS patients, Rick found that less than 1% of 1000 ALS patients had an ALS Functional Rating Scale-Revised (ALSFRS-R) improvement of at least four points lasting at least a year. Identifying ALS reversal in patients is key for enrolling more patients into Rick studies which are of vital importance to trying to identify a common ALS resistance factor.

People can find out more at www.alsreversals.org

myTube – a new educational website about feeding tubes in MND

myTube workshop-1 (2)

A new website is now been launched, aimed at supporting people who are thinking about getting a feeding tube fitted and people who would like advice about using one. Cathy Soreny (filmmaker and nurse) talks to us about a new project from SITraN that involved members of the SMND RAG.

Motor Neurone Disease can affect eating in various ways – such as affecting swallowing and chewing, or it becoming difficult to use cutlery. People can start to choke, get chest infections and lose weight. A feeding tube may be suggested during a visit to clinic. Feeding tubes – often also called PEG, PIG or RIG tubes – enable liquid food to be passed directly into the stomach. Quite understandably people often feel a little alarmed and confused when a feeding tube is suggested. What will it look like? How will it feel? How will we cope with using it? There can be many questions, and sometimes people delay having a tube due to their concerns.

myTube screen shot

Dr Chris McDermott’s research team at SITraN in Sheffield has been very aware about these worries. They conducted a research study called ProGas to find out more about the pros and cons of feeding tubes in MND. One element of this study was interviewing people about how they felt about feeding tubes – first when they were deciding whether to have a tube or not, and then after they had had it fitted. Many useful ideas and themes came to light, and the SITraN team wanted to make sure that this information could be turned into easy to access advice for anyone thinking about a feeding tube.

Chris approached me and my team to tackle this, as we had made the myNIV website a couple of years ago, where people could learn more about using non-invasive ventilation machines. For myTube we again  worked with a group of people who were living with MND and their carers, so their ideas and voice would be at the heart of everything we did. The whole project was a collaboration between these people, filmmakers, web designers and clinicians. myTube has been funded equally by the MNDA (the local South Yorkshire branch and central office) and Sheffield-based Westfield Health Charitable Trust.

Jason-this-is-my-tube (2)From February until July this year we held four half day workshops. We asked the patient and carer group for their detailed thoughts and reflection on the research findings, and how these issues affect them in their daily lives. One key idea really came out of our group discussions – everyone felt they never had the chance to meet someone with a tube before they had their own fitted. So they wanted the website to be a way to ‘meet’ people, hear about their experiences and see their feeding tubes in use.

The website developed into a collection of short films, featuring the myTube team in their own homes, talking about how they made their decision, how they feed with their tubes and useful troubleshooting tips. The films are supported by brief sections of text and a list of carefully selected resources from trusted organisations, such as the MNDA’s range of fact sheets.

We are extremely proud of how this project has come together over the past year and much credit is due to the wonderful group of patients and carers who contributed so much – ideas, insight, honesty, creativity and humour! We would like to thank them all for making myTube a success – Marlene and Trevor Leigh, Terry and Rose Hobbs, Jason & Liz Liversidge, Michael Hickman, Dave Booker and Brian Jackson.

You can take a look at myTube at www.mytube.mymnd.org.uk

March 2017

SMND RAG Chairperson

Michael HickmanWe are delighted to announce the appointment of Michael Hickman as the new chair for the group.

Michael has a long history with the SMND RAG having served as a member since 2009 and will be an asset to the group moving forward.

Social Media

The SMND RAG now have a presence on Facebook.  For more information please click here

 

New members welcome

The ‘Sheffield Motor Neurone Disorders Research Advisory Group’ (SMND RAG) is a committee that brings together patients and carers from the South Yorkshire area who wish to be actively involved in ensuring patient and public involvement in Sheffield MND research.

If you are interested in becoming involved with the group you can access more details about the role and application form here or please contact us at smndrag@sheffield.ac.uk for more details. You are also welcome to attend a meeting and can have a tour of SITraN to see if you would like to become involved with this group

February 2017

SMND RAG Co-ordinator

Feedback from Annette Taylor following her appointment as the new Co-ordinator for the SMND RAG.

“I am delighted to be appointed as the Co-ordinator for the SMND RAG.  I have been involved with the group since it began in 2009 and look forward to the challenge of the new role.”

January 2017

Patient & Public Involvement – Interview Project

Members of the SMND RAG were interviewed as part of a project to explore the experiences of patients, carers, volunteers and researchers at SITraN (Sheffield Institute for Translational Neuroscience) in Sheffield.  For more information on the projects findings please click here.

NICE Guidelines update

Last year (Feb 2016) NICE published a national guideline about the assessment and management of Motor Neurone Disease (MND-assessment and management nice.org.uk/guidance/ng42) which aims to improve care for people living with MND from diagnosis to end of life.

It covers a number of areas of concern, making recommendations for practice based on the available evidence and recommendations for future research.

Some of the areas covered had been reviewed previously in a respiratory management guideline (Motor Neurone Disease – the use of non-invasive ventilation in the management of motor neurone disease. NICE CG105 2010) which made recommendations about diagnosis and multi-disciplinary team working as well as respiratory assessment and management. These recommendations are included in this more comprehensive guideline (NG42) and where additional ones have been made this is indicated in the guideline (new for 2016).
Recommendations have been made for the first time in the following areas:

• cognitive assessment
• psychological and social care support
• planning for end of life
• managing symptoms including muscle problems, saliva, equipment and adaptations, nutrition and feeding tubes, communication including ACC and cough effectiveness.

These guidelines offer comprehensive evidence-based recommendations, providing patients and carers with the knowledge to make informed decisions about their care and placing a responsibility on providers (health care professionals and commissioners) to ensure equitable care and access to that care.

For more information please click here

December 2016

MyTube

The new MyTube website has now been released, please click here to visit the web-based resource for more information about feeding tubes.

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