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.
For example, one in five (22%) families surveyed by Action for M.E. in 2017 said a safeguarding/child protection referral had been made against them. Nearly half of these referrals related to claims of fabricated/induced illness or FII (previously known as Munchausen’s by Proxy); this heightened frequency of FII claims sits widely outside the national prevalence rate, and 70% of all cases were dropped within a year.
Raising awareness and understanding of the condition is essential in ensuring that chidren, young people and adults affected by M.E. can access the services and support they need and deserve.
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. Sadly, people with M.E. are six times more likely to die by suicide compared to the general population.
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.”
Research conducted by the 2020health thinktank found that M.E. cost the UK economy at least £3.3 billion in 2014/15, including healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care.
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).”