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
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!