Other News

BBC Look East - Story on Biomedical ME Research in Norwich - 26 January 2017

The event was hosted by the Institute of Food Research and Invest in ME Research. Dr Fluge, a senior consultant and oncologist, talked about the ground breaking research he is leading in Norway on Rituximab. 

Professor Carding from the Institute of Food Research and UEA also talked about research looking for causes and treatments for ME in the gut and its microbial communities. 

After the talks there was an opportunity for members of the public to ask questions. 

BBC Look East ran an excellent story on this event which is well worth watching. At the time of writing (28 Janaury) there have been over 5,000 views.


Invisible Conditions Week at the CQC - includes ME and CFS! (begins 9 November 2015)

The Care Quality Commission (CQC) describes their campaign as follows:

#InvisibleConditions campaign

For one week in November, we’ll be highlighting five different ‘invisible’ conditions on our social media accounts:

  • Monday – M.E. / Chronic Fatigue Syndrome
  • Tuesday – EDS
  • Wednesday – Hearing loss
  • Thursday – Mental Health
  • Friday – Arthritis

We want to hear from you about your experiences of care. Join the conversation on Twitter using the #InvisibleConditions hashtag, or tell us about your care through our website.


Do consider responding as it is an opportunity to bring about change.

Forward-ME - Minutes of Meeting held on 15 July 2015

Meetings are held at the House of Lords.  The most recent meeting was held on 15 July 2015.

Minutes of the meeting can be found here.

A guest speaker at the meeting was Dr Martin McShane, Director of Long Term Conditions, NHS England.  There was discussion around the move to more patient centred care and the difficulty in getting the 2007 NICE Guidelines reviewed.

Minutes of earlier meetings can be found here.
Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.
Forward-ME has no formal constitution. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS.


ME Association major survey into CBT / GET / Pacing

Published 29 May 2015

The report is called 'No decisions about me - without me'

A summary is available on the MEA website here.
The full report can be downloaded here

Nationwide ME and CFS Patient Survey

Closes 14 June 2015.

Healthwatch Trafford are currently undertaking a nationwide survey to look at how people with ME and CFS experience healthcare.

''Following concerns about treatment and access to services in the area received by Healthwatch Trafford, this survey has been created to find out what it is really like for those with the condition''.

''Although our primary focus is on Trafford, I would encourage people from other areas to fill in the survey as we will share the results with Local Healthwatch organisations around the country. The survey is anonymous and you will not be identified by your responses so we would like people to be as honest as possible. The more information we can gather, the more able we are to identify the problems and work to improve those services.''

You can acess the survey here

Institute of Medicine (IOM)

February 10 2015

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

IOM recommends that ME and CFS be renamed Systemic Exertion Intolerance Disease (SEIDS)

For more information see the IOM website here.