The Countess of Mar, Chair of the Forward-ME Group and Patron of ME Research UK has raised a number of points with the Department of Health and Social Care concerning how those affected by ME/CFS can report adverse effects experienced due to participation in Graded Exercise Therapy and/or Cognative Behavioural Therapy (GET and CBT). These two ‘treatments’ are recommended by The National Institute for Health and Care Excellence...

Minutes of the Meeting held in Residence 1, House of Lords, Tuesday 1 May 2018, 2.00 pm Present: Countess of Mar (Chairman); Carol Monaghan MP; Amy Brett (PA to Ms Monaghan); Bill Kent (reMEmber);  Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (25% Group); Christine Harrison (Brame); Clare Ogden (AFME); Dr Charles Shepherd (ME Association); Dr Nina Muirhead; Sue Waddle (ME Research UK); and Alexandra Heumber (Head of International...

On 25 May 2018, our Vice Chair, Mrs Sue Waddle attended NICE’s Scoping Meeting in London as part of the on-going process to replace the current Guideline on ME/CFS (CG53) which is due in 2020. Her personal view of the meeting is now available. The aims of the meeting were to obtain views on the draft scope of the review in relation to the areas for inclusion and to identify any omissions but also to encourage membership of the planned guideline...

Earlier this year, ME Research UK funded a new research study led by Prof. Yan Yiannakou in Newcastle looking at changes to the immune system and gut microbiome in patients with ME/CFS and those with irritable bowel syndrome. Gastrointestinal symptoms are very common among ME/CFS patients, and can include abdominal swelling and/or pain, nausea and vomiting, and abnormal bowel behaviour. Indeed, their presence is one of the criteria that can...

It is fitting that on International ME Awareness Day 2018 that The International Alliance for ME, has written to the World Health Organisation’s Director-General in Geneva seeking a meeting to discuss the international response to the illness.  The letter has the support of organisations (such as Forward-ME) and charities (including ME Research UK)  from countries in the US, Australia, Spain, Japan, South Africa, as well as the UK. As the...

Notes of Meeting Held on 28th March 2018 Present: Countess of Mar (Chairman); Carol Monaghan MP; Dr William Weir; Dr Charles Shepherd (ME Association); Jane Colby (Tymes Trust); Sarah Reed (#MEAction); and Clare Ogden (Action for ME). Apologies: Hannah Clifton, Dr Paul Worthley and Dr Gareth Tuckwell (ME Trust); Bill and Janice Kent (ReMEmber); Cath Ross and Tony Crouch (25% ME Group); and Christine & Tanya Harrison (BRAME). Science Media...