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The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.

General and other Information about MS


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Links to sites that cover MS as a whole or that don't fit into any of the other categories.

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  1. 4
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29 links

  1. All About Multiple Sclerosis aims to provide accurate and comprehensive medical information about multiple sclerosis (MS) written in plain English by people living with the disease and its symptoms. It contains a detailed description of multiple sclerosis, a large archive of news stories about MS, an MS encyclopedia and a large links section containing hundreds of commented and rated links. It also has a list of famous people with multiple sclerosis and personal accounts, poems and essays by people with MS. The site receives no sponsorship from pharmaceutical or other financially interested companies and maintains absolute editorial independence.

    See also their excellent Multiple Sclerosis Encyclopaedia:
    http://www.mult-sclerosis.org/wholeglossary.html

    This is a fantastic site, chock full of useful information on MS, and owned by a member here, Paul:
     
  2. Download as PDF or order paper copies of various fact sheets about:
    Newly diagnosed About MS Living with MS Symptoms Treatments For families For people with MS For Health Professionals
  3. This map contains information on MS services and other useful groups across the UK - from MS nurses, therapists and specialist hospitals to support groups and more.

    The first recommendation of the NICE MS Management Guidelines states that everyone with MS should have access to specialist neurological services when they need them. However, for many this can be a hit and miss experience. In the hope of improving this situation, to provide guidance for individuals and to help primary care staff ensure appropriate referrals, the MS Trust, in conjunction with the MS Society, has drawn up a list of all the specialist centres in the UK and the neurologists within those centres.

    The centres listed have true expertise in the management of multiple sclerosis, commonly a specialist nurse service, and the ability to offer disease modifying drug therapy where and when appropriate.
  4. The NICE clinical guideline on multiple sclerosis covers the full range of care that should be available from the NHS to adults of all ages with MS. They include how the diagnosis should be made, how people should be told they have MS and the treatments that should be offered. Treatments for MS may involve medicines but also include physiotherapy, rehabilitation, and psychological and emotional support.

    Click the Download button at the top of the page to save the full guidelines as either PDF, ePub or eBook.

    In particular, see the tab for Tools and Resources at the top, and the link for Recommendations (about 1/2 down on the left sidebar menu) where it states time-frames and what information you should be given after diagnosis etc.
  5. Able Radio is a live, online, radio station presenting shows at the heart of the disabled community. As a unique online radio station, our concern is to move forward with disability and restrictive medical conditions. Join us for great music, information and chat presented by a variety of personalities, each adding their own unique style focussing on the ability in disability.
  6. ABLEize is a top ranking directory offering the largest Internet collection of disability, mobility and health resources in the UK and Europe. Ableize was born out of the frustration of its founder, a disabled wheelchair user following poor Internet search results and is now the largest and most comprehensive directory of disability and health care information and products on the Internet.
  7. "Our information guides are short and easy to digest, giving an overview of the relevant topic. Factsheets are longer with more detail, for those who want more information." Download as PDF.
     
    Information Guides on:
    Money and legal guides Health and well-being guides Home and care guides Work and learning guides Travel and lifestyle guides  
    Factsheets on:
    Consumer factsheets Health factsheets Housing factsheets Income and benefits factsheets Legal factsheets Social care factsheets  
     
  8. A blog by Professor Gavin Giovannoni, also known as the "Multiple Sclerosis Research Blog".

    The aim of this Blog is for the Barts and The London Neuroimmunology Group to update you on the latest research in MS with an emphasis on the research we are involved in.

    A major reason for maintain the Blog is to thank the funders of our research. Funders encourage us to engage with the general public, people with MS and their families and other people with an interest in MS. We believe you have the right to know what we are spending your research money on! The purpose of our work is to improve our knowledge and understanding of MS with the goal of improving the lives of people living with this disease.

    For us as a group of MS researchers the blog allows us to reflect on our work, assess its potential impact and plan for the future. For some of our research projects we need your help; this may be as a volunteer for a particular study or simply helping us to spread the word. A major benefit of the blog is that it encourages reflection and team work and provides us with an opportunity to celebrate our successes.

    I am very proud to lead the Neuroimmunology Group at Barts and The London and would like to take this opportunity to thank them for their achievements and commitment and perseverance towards our ultimate goal: a world free of MS.
  9. Ouch! is a blog and internet talk show which goes beyond the headlines to reflect disability life.

    (The old version of the Ouch! blog is still available for reference here:
    https://www.bbc.co.uk/news/blogs/ouch)
  10. ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. The information provided on ClinicalTrials.gov should be used in conjunction with advice from health care professionals. Before searching, you may want to learn more about clinical trials.

    The link takes you to MS Trials in the UK.
  11. The aim of this website is to tell you about multiple sclerosis (MS) in a simple, fun way. The website and activities have been designed specifically for young people to watch, listen and get involved in.
  12. European Committee for Treatment and Research in MS
     
    ECTRIMS works with researchers and clinicians of its member countries and with other organisations that share similar missions and objectives on a worldwide scale, creating networking and collaboration opportunities. The ultimate goal of ECTRIMS is to improve basic and clinical research and clinical outcomes in MS.
     
  13. The Kurtzke Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis. The EDSS replaced the previous Disability Status Scales which used to bunch people with MS in the lower brackets.

    The EDSS quantifies disability in eight Functional Systems (FS) and allows neurologists to assign a Functional System Score (FSS) in each of these. The Functional Systems are:
    pyramidal cerebellar brainstem sensory bowel and bladder visual cerebral other
    EDSS steps 1.0 to 4.5 refer to people with MS who are fully ambulatory.
    EDSS steps 5.0 to 9.5 are defined by the impairment to ambulation.
  14. Calculate, track and understand your MS disease status. From the Barts-MS /MS Research Blog.

    Read more: http://multiple-sclerosis-research.blogspot.com/2015/12/clinicspeak-finally-webedss-goes-live.html
  15. The professional membership organisation for Clinical Nurse Specialists and Therapists. The United Kingdom Multiple Sclerosis Specialist Nurse Association (UKMSSNA) provides support, information and education to MS Specialists throughout the United Kingdom, to enable them to provide appropriate healthcare services to people affected by multiple sclerosis.
  16. A website and organization created to help add education information for the global MS community via the internet and via live seminars. You've entered a place where information and knowledge are exchanged for the benefit of ALL persons affected By MS. This includes the MS Patient, the caregiver(s), friends and the medical providers.
  17. Patient resource for cognitive change in MS. This website contains information about cognitive change and practical strategies to help patients.
  18. Predicting multiple sclerosis is like forecasting the British weather. If you've spent much time on these islands you'll understand how fickle the weather here can be. Weathermen can only give the vaguest of indications of how things may turn out and, even then, only for the next few days. MS is similar - you can say that a number of factors are correlated with a poorer disease outcome but not with a great degree of certainty. Long-term benign disease courses can suddenly become progressive just as malignant courses can suddenly reach plateaux. With MS, nothing is certain.
  19. The Neuro Therapy Centre provides support to people with a neurological condition and their carers at four levels:
     
    A place of care, friendship, advice and personal support where members and their carers can share the experiences of living with an incurable long term degenerative neurological condition in an informal, relaxed and happy environment with each other and with qualified experts in specific matters Physiotherapy and other fitness related services provided by qualified Health Care Professionals Oxygen Treatment Complementary therapies provided by qualified therapists
      Formerly: The MS Support Centre
     
  20. The NICE CKS service provides primary care practitioners with a readily accessible summary of the current evidence base and practical guidance on best practice in respect of over 330 common and/or significant primary care presentations.
     
    The service is being regularly maintained and upgraded as and when significant new evidence emerges. More than 65 topics will be updated and up to 10 new topics will be added each year.
  21. Positive Living with MS was started by Penelope Conway who was diagnosed with MS in 2013. She found few resources for positive encouragement; to laugh, cry, share, and just feel normal in the midst of a life of chaos; so she decided to start something herself.

    Positive Living with MS was birthed out of Penelope’s desire to show others that regardless of the challenge, we can all enjoy life to the fullest and find a smile in the storm.
  22. National Support for all Neurological Conditions
     
    The Brain Charity offers emotional support, practical help and social activities to anyone with a neurological condition and to their family, friends, and carers. There are hundreds of different neurological conditions, including stroke, brain injury, dementia, brain haemorrhage, and many rarer conditions.
     
    We offer a range of services including, but not limited to: Counselling, Welfare Benefits service, adult learning courses, confidence building courses, support groups for different conditions, employment support, Carers Advocacy, legal service, supported volunteering opportunities, and a national information & advice service which includes a library open to the public, and a national helpline.
     
    (Was previously Neurosupport)
  23. The NHS Constitution has been created to protect the NHS and make sure it will always do the things it was set up to do in 1948 – to provide high-quality healthcare that’s free and for everyone.

    The Constitution sets out your rights as an NHS patient. These rights cover how patients access health services, the quality of care you’ll receive, the treatments and programmes available to you, confidentiality, information and your right to complain if things go wrong.

    Download the NHS Constitution PDF and get more information about your rights as an NHS patient.
  24. The Patients Association is a healthcare charity which for nearly 50 years has advocated for better access to accurate and independent information for patients and the public; equal access to high quality health care for patients; and the right for patients to be involved in all aspects of decision making regarding their health care.
  25. This Really Clear Guide to MS is all about sharing useful information that you can easily understand with No Big Words or Medical Jargon.
  26. The UK Clinical Trials Gateway provides easy to understand information about clinical research trials running in the UK, and gives you and others access to a large range of information about these trials. It is designed to enable you and your clinician to locate and contact trials of interest to you.This information is designed to inform you of ongoing trials.

    The information is being taken from a variety of national registers that are publicly available. This means that it can include trials that may be run from other countries but which have part of the study taking place in the UK.

    NOTE: If the link doesn't work, go to the Home page https://www.ukctg.nihr.ac.uk/ and enter "Multiple Sclerosis" in the search box for trials.
  27. A video explaining MS.
     
  28. Here you will find Multiple Sclerosis videos covering a wide range of topics. Information about What Is Multiple Sclerosis?, The Nervous System, or Possible Causes of Multiple Sclerosis, and more.
  29. An extensive library of on-demand video programming, webcasts, professionally monitored chat rooms, and additional interactive communication features that bring knowledge and empowerment right into the privacy and comfort of a person's home, from the MS Association of America.

About Us

Founded in 2004, MS People UK is a non-profit website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The community atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
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