ECHAlliance member Joan McParland gives a patients view on Myalgic Encephalomyelitis: What do we need to know, while expecting a rise in cases post Covid-19?
The unique and defining feature of M.E. is called post-exertional malaise (PEM) a worsening of symptoms brought on by physical activities, mental activities, or both.
This 3 minute video helps identify and explain PEM
The European ME Alliance webpage provides links in other languages, see below.
M.E. is also sometimes referred to as chronic fatigue syndrome (CFS) or ME/CFS, also referred to as post-viral fatigue syndrome. We will not debate the name at this time but healthcare providers do need to be aware of the emerging post-covid health threat we face as a result of Covid-19.
There is an abundance of evidence on post-viral states developing into M.E., if susceptible patients are not properly identified and early, preventative interventions not applied.
An increased risk of developing ME/CFS has already been associated with a previous viral pandemic.
The British Medical Journal (BMJ) published a study. It found that in the case of four different viruses, 9% of people affected ended up with ME.
Covid-19 also has the potential of producing a large number of new cases of M.E. and will add to the thousands of patients who never recover from virally induced chronic fatigue.
Vital information and more short educational videos on PEM can be found here https://workwellfoundation.org/
The Workwell Foundation’s mission is to focus on research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to facilitate an understanding of the biological basis for fatigue and post-exertional malaise (PEM).
The WHO ICD-10 lists Myalgia Encephalomyelitis, Chronic Fatigue Syndrome, and Post-viral Fatigue Syndrome (PVFS) as the same neurological disease, within the neurological disorders section.
Myalgic encephalomyelitis (ME) has been classified by the WHO as a neurological disease since 1969 and has occurred in both epidemic and sporadic form.
As a result of the pressure from M.E. charities and evidence from biomedical research, which challenges the recommended graded exercise therapy approach to tackling this disease, the U.K. current NICE Guidelines for ME/CFS is under review. In a 2019 systematic review by Vink, the only intervention which improved return to work rates was early enforced rest.
More information here: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
For the estimated 17 million of M.E. patients around the world, this isolation during Covid-19 is our ‘normal’ and will continue long after the world has come to grips with the current pandemic. Those of us who live with M.E., and the scientists who have been studying the disease for decades, have a wealth of information to share.
With up to date and correct knowledge, we can help and possibly prevent another wave of M.E. patients who could be destined be to a lifetime of disability, due to a lack of understanding of the core mechanisms of this disease.
Please don’t just focus on the here and now, be forearmed for what’s to follow.
Mrs. Joan McParland
Founder and Voluntary Coordinator
Hope 4 ME & Fibro Northern Ireland
‘Building Bridges To A Better Future’