LINK Highlights

The latest June issue of LINK includes:

• A plea to the ME/CFS community to come together from Medical Research Council (MRC) Strategy Board Member, Professor Stephen Holgate. He states that the hostile approach by some patient advocates has discouraged researchers from entering the field.
• Read about what matters to CFS/ME patients from their medical professionals.
• Let’s Talk About Sex. Sex and sexuality is a relevant and important topic for CFS/ME patients but is missing in most conversations between clinicians and their patients. Medical clinicians attending the CFS/ME Clinical & Research Network & Collaborative Conference in Milton Keynes said they should be more pro-active in conversations about sex and sexuality with their clients.
• AYME gets people listening in ME Awareness Week. There’s a summary of MEAW media coverage for AYME as well as the fundraising events that took place. Please log on to www.justgivingmeawayme.com.
• The Problem Page discusses Activity Management – what it is and how to do it.
• Holidays. A holiday in the warm sun can be a good rest, but can be spoilt by a nightmare journey and the possibility of that causing a relapse during or after the holiday.  LINK looks at some things that might help make the travelling and break a success.
• Exam concessions. LINK has a reminder to plan well ahead and to deal with the Examinations Officer directly.  Always state clearly which concessions are to be applied for and double check which concessions are in place once agreement is reached with the Examination Board.  Those candidates taking exams over the Christmas period should contact the Examinations Officer as soon as possible; some of them do work over the summer holidays.  Those taking exams later next year need to approach the Examinations Officer in September.
• Medicine and Me:  CFS/ME. All those affected by CFS/ME are encouraged to attend the conference initiated and developed jointly by the Royal Society of Medicine, The ME Association, Action for ME, AYME, The 25% Group and The Young ME Sufferers Trust.
  
  The conference is part of the RSM meetings entitled ‘Medicine and Me’, specifically designed to bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues relating to a particular condition.
  
  This ‘Medicine and Me: CFS/ME’ meeting will focus on the difficulties and delays in diagnosing, ME and CFS in children and adolescents, the existing range of treatments and the latest research and its impact on the development of new, disease-modifying treatments.
  
  The meeting will provide an opportunity for patients and their families to share their experiences, to hear about the latest research and to question the experts.
  
  Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE
  Date: Saturday July 11th. For further information go to www.rsm.ac.uk

The April issue of LINK includes:

• The NICE Guideline Judicial Review outcome.
• AYME's Medical Advisor being awarded three-year funding to research the causes and treatment of ME/CFS in children and young people.
• ME Awareness Week, May 9 to 16th to raise awareness of the severely affected.
• A study highlighting the importance of being seen by a paediatric ME/CFS specialist to make sure other conditions are not missed.
• Getting the right mix of education for your child.
• Parents and supporters doing amazing things for AYME to raise awareness and funds for MEAW.
• The ME/CFS conference for patients and carers and professionals at the Royal Society of Medicine in London on Saturday July 11.
• The NHS CFS/ME Clinical and Research Network & Collaborative Conference for professionals in Milton Keynes on April 23-24.