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Dialogues for a neglected illness

A Wellcome Public Engagement Fund Project

Dialogues for a neglected illness (Dialogues for ME/CFS) is a project made possible by an award from the Wellcome Public Engagement Fund. (Sept 2018 – Sept 2021).

ME/CFS was originally called benign myalgic encephalomyelitis during an epidemic in the mid 1950s. It was categorised as a physical disease by the World Health Organisation in 1969. ME/CFS is common, affecting 0.2- 0.4 of the population and is serious: “…can be as disabling as multiple sclerosis, rheumatoid arthritis, systemic lupus erythematosus and congestive heart failure.” (Institute of Medicine Report 2015 US). In spite of this, there has been pitifully little high quality biomedical research worldwide.

Sadly, in the 1980s, it wrongly became confused with fatigue which can have psychiatric and behavioural causes and this stigmatised the disease, leading to the use of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) as “ treatments.” In 2002 the Chief Medical Officer’s (CMO) Working Group recognised that “substantial concerns exist regarding the potential for harm” in respect of graded exercise (GET) and that patient reports “clearly indicate that the York review results do not reflect the full spectrum of patients’ experience.” (Countess of Mar, ‘Forward ME’ 2020, to the Dept. of Health). Ignoring these concerns raised in 2002, the 2007 NICE Guideline recommended GET and CBT, promoting the belief that patients are merely de-conditioned, rather than suffering from a serious physical disease. This belief was then backed up by costly, poor quality research undertaken by psychiatrists.

As a consequence of this erroneous belief, biomedical research into ME has been neglected, and medical education has been either non-existent or inaccurate. It has led to a situation where many doctors feel unable to diagnose the disease or provide medical support to patients. Many patients have deteriorated and developed long lasting severe disability as a result of misguided advice and management. They have faced disbelief, stigma and social isolation.

In October 2020, in a complete reversal, the draft version of the new NICE ME/CFS Guideline (due in 2021), attempts to call a halt to the harm being caused to patients. It instructs at 1.11.16   

              “Do not offer people with ME/CFS:

    • any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
    • any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy, structured activity, or exercise programmes that are based on deconditioning as the cause of ME/CFS ”

It is clear that the situation is changing in the UK, even as ‘Dialogues’ has been under construction. The exciting  Decode ME/CFS DNA Study funded by the Medical Research Council is due to start collecting samples from 20,000 patients and progress is being made worldwide, with ME/CFS attracting new researchers from a range of disciplines, often using cutting edge technologies to investigate complex multi-system disease – the challenge of the 21st century.

The realisation that Covid-19 appears to be one of the many viruses or pathogens that can lead to the development of multi-system dysregulation and ME/CFS, lends even greater urgency to this research!

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

“ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling. Those with ME/CFS need to be listened to, understood and supported to adapt their lives. Many have suffered stigmatisation and prejudicial attitudes in the past; this guideline should ensure they receive more empathetic care.” Nov 2020

Baroness Finlay, Vice-chair of the NICE guideline committee, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales.     

 – from ‘NICE guideline’ https://www.meresearch.org.uk/nice-guideline-update-press-release/

Testimonials

Project feedback & Testimonials

This series of videos is of superlative quality and has become a unique resource for many – from those affected by the illness, healthcare professionals and those with family members coping with ME/CFS. It demystifies the illness, makes it real to those with no connection to ME/CFS and is a testament to the work of the creators. The quality of the information given and the high quality of the videos is a model that others should follow.
ME Research UK
By shining a light on both the widespread misinformation and the biological reality of ME/CFS, the powerful videos being delivered by Dialogues for a Neglected Illness will help to change the fundamental narrative about the disease that has derailed research and harmed patients for decades.
Mary Dimmock
Patient Advocate
Current films

as the project continues more films will be added

Introduction to ME/CFS
Introduction to ME/CFS
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Post-Exertional Malaise
Post-Exertional Malaise
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Activity and Energy Management – Pacing
Activity and Energy Management – Pacing
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Severe & Very Severe ME / CFS
Severe & Very Severe ME / CFS
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Graded Exercise Therapy
Graded Exercise Therapy
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Patients’ Accounts – Symptoms
Patients’ Accounts – Symptoms
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Latest news
‘Dialogues’ resources being used by US ME/CFS Clinician Coalition.
‘Dialogues’ resources being used by US ME/CFS Clinician Coalition.

We are delighted that links to our videos about Post Exertional Malaise and Severe ME/CFS,   in  the ‘Dialogues from a neglected illness’ project, have been included in the new resource

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Charity Support
Charity Support

Support from major UK charities is much appreciated as they are helping the videos reach a wider audience. ME Research UK is hosting the videos from the Dialogues project on

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“Healthcare” Special Issue to include dialogues video
“Healthcare” Special Issue to include dialogues video

“Healthcare” – New proposed Special Issue: “ME/CFS – the Severely and Very Severely Affected” – includes our video “Severe and Very Severe ME/CFS” as the ‘Summary Video’ Guest editors for

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ABOUT US

Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. When complete it will consist of a website with about a dozen new short videos, accompanied by links to existing educational materials and references.

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Recent Posts

  • ‘Dialogues’ resources being used by US ME/CFS Clinician Coalition.
  • Charity Support
  • “Healthcare” Special Issue to include dialogues video
© J Biggs & N Boulton