Even in its mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about M.E. means children, families and adults affected by M.E. can experience disbelief, and even discrimination, from friends, family, health and social care professionals, teachers, employers and colleagues.
People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may recover, while others can remain ill for a number of years and may not get better. Some find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives. This is similar to many other chronic illnesses.
In February 2015 an Institute of Medicine (IOM) committee, commissioned by the US government, published a report, Beyond M.E./CFS: redefining an illness.
This level of commissioning and investment was unprecedented, and the report concluded:
“It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multi-system disease that frequently and dramatically limits the activities of affected patients.”
In its guideline for M.E./CFS, the National Institute for Health and Care Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. More recent research shows that M.E. scores lower on health-related quality of life tests than most other chronic conditions.
We also know that M.E. is the most common cause of long-term absence among school children, and that it has a profoundly disruptive effect on children's ability to socialise and perform at school - and therefore on how they see their future.
So it's not surprising that frustration, anxiety, low mood and depression are sometimes experienced by children and adults with M.E. as a consequence of having to cope with the impact of the condition.
One person told us:
“I have no life. After 13 years I am no longer able to smile and stay positive through all the losses, particularly that of my physical and financial independence, and am now on antidepressants.”
M.E. is not a mental health condition, and so should not be used as the basis for detention under the Mental Health Act. However, we do hear that a small of people with M.E. are being considered for assessment for detention under the Mental Health Act, or being detained, each year. Please see our factsheet on assessment and detention, and what your rights are if detained, for more information.
Many people with M.E. face isolation, as friends and family struggle to understand the true impact of M.E.
One respondent to our 2014 M.E. time to deliver survey told us:
"I spend 24/7 alone. The only person I see during the week is the shopping delivery man.”
“I have a few friends left but am only well enough to see them very occasionally. I am mainly housebound but have a few slightly better periods when I can manage to get out, quite often at a price. I just about keep up to date with household tasks, though these are low priority. I try to write poetry but am only able to do this occasionally. I've not worked for many years and do feel a great sadness that the normal things in life – career/marriage/family/social life – have been stolen from me.”
M.E is not just physically and socially isolating. The lack of acceptance can also make this condition a very lonely place. One young person with M.E. told us:
“Several of my tutors at school and university got very exasperated, first agreeing to make concessions for my disability, then later retracting those concessions on ‘moral grounds’ (typically saying, "But it's unfair to everyone else") or forcing me to justify them a second or even third time before allowing me to use them. My friends try to be helpful, but I don't like talking about it much, and sometimes I think I haven't said enough. More than once I've assumed they knew how difficult something was for me, and then found that them talking about how hard life must be for a more visibly disabled friend.”
University of Bristol research published in 2011 into the impact of M.E. on employment and productivity estimated lost earnings to the UK economy of more than £102 million a year.
Lead author Dr Esther Crawley said, “Our findings are important because they show the long-term cost to society, which must be accounted for in estimates of the cost-effectiveness of M.E. or CFS interventions and service provision.
“In addition to this indirect cost to the UK economy, health resource use and welfare payments impose direct costs, and families of patients must bear the costs of informal care, often reducing their own working hours. In young adults, disruption of education reduces productivity in later years. Above and beyond these financial costs, M.E. or CFS has a huge impact on quality of life.”
The IOM report states that, in the US, the “direct and indirect economic costs of M.E./CFS to society have been estimated at $17 to $24 billion annually (Jason et al, 2008), $9.1 billion of which has been attributed to lost household and labour force productivity (Reynolds et al, 2004).”