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Economic Cost Estimates for CFS Skyrocket


Senior Member
AfME study 2003 (UK): ME costs the nation nearly 3.5 billion a year

AfME study 2003 (UK): ME costs the nation nearly 3.5 billion a year
'ME costs the nation over 3 billion a year' can we afford it ?
12 May 2003

M.E. is costing UK...
3.5 bn a year
9.5 m every day
100 a second
...how long can we afford it?

Cost to the Nation Report by Action for M.E.

The current official estimate is that M.E. affects 240,000 people four people in a thousand*. Accepted as a real, serious and debilitating condition by the government in 2002, M.E. presents a wide scale health problem to the UK economy.

Action for M.E. has calculated that the total cost to the nation is 3.46bn per year

While it is relatively simple to calculate the direct financial losses of long-term ill health this is a rather simplistic and even crude way of illustrating its effects. M.E. destroys lives. The profound impact loss of health has on an individual is difficult, if not wholly impossible, to measure in monetary terms. Good health is immeasurable.

The following report calculations attempt to measure only the most tangible of costs to the economy, namely lost revenue, benefits and healthcare spend. Over 90% of these figures are due to lost income.

There is no cure or effective treatment for M.E. at present and contrary to popular belief, not everyone recovers. Those that do, often take years and few are able to return to pre-illness levels of activity and full-time employment. The cost of M.E. is therefore not one to rapidly disappear.

M.E. the cost to the community (2002 s)
Cost per person 14,746
Estimated UK cost3,467m

* Figures in this table are based on 0.4% (235,157) of the UK Population at 2001 Census (58,789,194)

Health costs
Total medical costs amount to 210m per annum.

The medical costs of the illness are nearly 900 per person each year. This mainly consists of consultations, tests (to exclude other illnesses) and drugs to help manage symptoms in the absence of an effective treatment.

Benefits and lost earnings
Public purse costs benefits and lost taxation amount to 2,222m.

Around 80% of people with M.E. had been in employment before becoming ill. The loss to the Treasury in tax and national insurance (at the lower 2002 rates of N.I.) is calculated at over 4,100 per person.

Over 75% of respondents reported receiving benefits, usually incapacity benefit. These cost over 4,800 for each person. Many struggle to get benefits they are clearly entitled to due to lack of information and discrimination against people with M.E.
Annual cost of M.E. per patient (2002 s)

Health sector 896
Lost income 13,850

Total(per patient)14,746

Note: Lost income extrapolated from Average Earnings Index.

The human cost
M.E. affects adults of all ages and even children as young as five. Most often triggered by a virus, M.E. causes severe fatigue, muscle and joint pain, sleep disturbances, short-term memory and neurological problems. Family members often have to take on the role of a carer as the patient slides into long-term illness with little support from the health service. A lucky minority recover in a year or two, a quarter become permanently house or bed bound with little improvement in sight. Few ever recover to pre-illness levels and many lose out on employment and education as a result.

What next?
The only real long-term solution is to identify an effective treatment. Although the need for research has been recognised there are no government funds specifically allocated for this purpose despite the high cost and prevalence of M.E. As a result, we still do not know what causes M.E. and why some people become more severely affected than others. There is no diagnostic test. There are also no effective treatments to offer people with M.E. On a more basic level, most professionals who come in contact with patients have not received any training on the condition. Education on the importance of early diagnosis and management is vital in preventing more people from becoming severely and chronically ill with M.E.

We feel that as a bare minimum, 1% of the estimated cost of M.E. 35 million should be allocated to establish a thorough research programme into M.E. This is the only way to begin to prevent this tremendous waste of money and lives and find a permanent solution to the national health hazard of M.E.

Notes to the survey

1. The Chief Medical Officers Working Group Report on CFS/ME in 2002 identifies a population prevalence of at least 0.2% - 0.4% which is used throughout this report
2. Statistical analysis of original data and an update to 2002 figures were carried out by the Survey and Statistical Research Centre (SSRC) at Sheffield Hallam University who take no responsibility for the quality of the data
3. All estimates are subject to error and should be regarded as ballpark figures only
4. The data was calculated using earlier survey information produced through a postal questionnaire sent out by Action for M.E. and M.E. Association in 1994 with 2,971 replies, a response rate of around 30%
5. Action for M.E. wishes to place on record its appreciation for the pioneering work and contributors to the 1994 Cost to the Nation Report.

Visit www.afme.org.uk for more information

For further information: Action for M.E. press office on <deleted>


Senior Member
When I became ill in 2005 I remember reading the cost of ME to the UK economy was 6.4bn, but have since lost the reference (probably filed somewhere).
Maybe somebody else can find more details:
30 October 2006

Action for M.E. has just released Facts and Figures, a publication containing a range of information about M.E., gathered from two recent major surveys.

Amongst the startling statistics uncovered, it was discovered that 83% of all people with M.E. suffer from severe muscle-pain, yet only 14% of the general public were aware that this was even a symptom. Data was derived from Action for M.E.s survey of over 2000 people with M.E. and an Ipsos MORI poll commissioned to determine public awareness of the illness.

M.E., also known as Chronic Fatigue Syndrome (CFS), is sometimes diagnosed as Post-Viral Fatigue Syndrome (PVFS). And, while there are an estimated 250,000 people with M.E. in the UK, over a third of the general public has never heard of the illness.

The impact of M.E. is often severe but the condition is widely misunderstood. In addition to severe fatigue, the condition can be accompanied by a wide range of debilitating symptoms, from cognitive dysfunction to chronic pain. Up to 25% of people with M.E. are either house- or bed-bound and some have to be tube-fed. Although the cost of M.E. in terms of personal loss is incalculable, a recent report by Sheffield Hallam Universitys Survey and Statistical Research Unit estimated the cost of M.E. to the UK at 6.4billion.

The full details of the findings are now available in a handy downloadable booklet http://www.afme.org.uk/res/img/resources/Facts and Figures.pdf , or a hard copy can be sent out by request.
Economic Impact

A recent report by Sheffield Hallam Universitys Survey and Statistical
Research Centre estimated M.E.s cost to the UK at 6.4billion per annum.
But the cost in terms of personal loss both financial and emotional is
incalculable. The effects of this debilitating illness arent limited to the
individual experiencing it it affects the person who cares for them (usually
parents or a partner), their families and their friends.

My employers were far from sympathetic. For the first month I had phone calls
a few times a week, asking me when I would be back at work and warning me
that my job would not be kept open. I returned to work but after a month
collapsed with exhaustion. To stop the bullying and harassment I took out an
official grievance against my employers. I managed to keep my job and was
moved to a new team. After six months I returned to work part-time. I had to
overcome much discrimination, judgments and assumptions. My employers
were then taken over and I was transferred to a lower grade job and then,
finally, made redundant.

77% felt that that they had lost their job because of the illness. Of these, 28%
were either forced to resign or were dismissed
93% of respondents felt that their employment opportunities had deteriorated
74% felt their educational opportunities had been limited or reduced
Before developing M.E., 63% of respondents worked full time. This drops to
just 6% after developing the illness
39% saw a reduction in the employment opportunities of their carer

I used to work as a freelance IT consultant, play in a band, go rock climbing
and travelling. In November 1997, a sore throat reduced me to a person who
could not talk for more than 10 minutes, walk 100 yards, read a book, watch a
film or cope with visitors. I was ill for five years. It took my career, most of my
friends, my sport, and left me devastated. I found, on recovery, that the world
of work doesnt welcome you back with open arms. I now earn less than 15K
per year.


Senior Member
"Lower educational attainment accounted for 19% of the reduction in earnings" - hah! I get what you're saying but imagine this is one of the factors all surveys of this type try to take into account. It would be fascinating to do a survey that took into account more factors - time of life the disease hit, the impact it had on educational opportunities...

I got CFS early; it knocked me out of the University but eventually I went back and earned a BS and an MS but it took years! So I am fairly education rich and exceedingly income poor!
I don't recall any other ME/CFS studies looking at the costs of the illness looking at the effect on education.

But there could be other factors also like you say e.g. better paid jobs often come after years of experience working which can be reduced with the illness.


Senior Member
I have been continually so frustrated by this issue. If the economy is losing so much annually through lost productivity, tax revenues, and benefit payments, then why are the government so short-sighted in not putting a just a few percent of 1 years losses into proper research (each 1% = 60M). The last figures (2009) show just 109,000 spent on research. It seems that the UK Government (of any political persuasion) either like to lose 6bn per year, do not want us to get better, or are just economically incompetent!
No illnesses unfortunately in the UK get 60m. Top of the list I saw a few years ago was breast cancer with 11m. Diabetes got 4-5m even though it is very expensive condition for the health service and shortens lives. Multiple sclerosis was getting around 2m and prostate Cancer less than 1 million. The research budget is limited; a lot of it goes to basic non-illness specific biological research along with public health research. Then it has to cover a huge range of conditions.

By contrast, MS charities were raising 11-13m for research each year last time I checked.

So I understand the argument put money for research is not like providing a health service: the NHS tries to have a health service for all; but the research budget is not going to find a cure for all illnesses anytime soon. It simply can't take on the task.

If the ME/CFS Community wants to speed things up, raising money for research is one of the things it needs to try to do.