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28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

Messages
13,774
Action for ME report on this:

https://www.actionforme.org.uk/news/me-costs-uk-economy-over-£3-billion/

M.E. costs UK economy over £3 billion
September 28, 2017

M.E. cost the UK economy at least £3.3 billion in 2014/15, according to a research report published today.

The figures account for healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care.

Funded by the Optimum Health Clinic Foundation, and undertaken by the 2020health thinktank, the Counting the cost report refers to the condition as “the health scandal of our generation.”

At the launch of the report in London this morning, attending by our Head of Communications and Policy, Clare Ogden, Chair of the Optimum Health Clinic Foundation, David Butcher, shared his personal experience of M.E., and explained the rationale for funding this study.

“We need to understand every detail of these costs, to provide a solid platform on which to have a sensible debate,” he said. “We also need a sense of urgency for research to prevent the lives of those with M.E. being needlessly wasted.”

Presenting an overview of her team’s findings, 2020health’s Julia Manning highlighted the considerable disparity of NHS spending on M.E. compared to other chronic, debilitating conditions. “A stronger commitments to research is needed in recognition of the substantial costs of CFS/M.E. to the UK,” she concluded.

Penny Mordant MP, Minister of State for the Department for Work and Pensions, commended the report, and spoke in more general terms about the challenges facing those with long-term conditions.

“Conditions which are hard to diagnose, are fluctuating, are hidden, are a massive challenge to great big governmental systems,” she said. “How do we offer personalised support to an individual? We will fail if we try and fit them into an existing system. Good quality, early interventions are key to building support which is sustainable, to really anticipate what someone needs.”

The report described its research as “a comprehensive UK cost-of-illness study of CFS/M.E., based on recorded patient data from both specialised services and primary care...with little data on welfare payments received by recruited patients, we also contacted the DWP for estimates on ESA and PIP payments to people with CFS/M.E. as a primary disabling condition. According to our weighted analysis, the total cost to the UK economy of CFS/M.E. in 2014/15 was at least £3.3 billion.”

That the report was praised by Penny Mordant is not reassuring.

“How do we offer personalised support to an individual? We will fail if we try and fit them into an existing system. Good quality, early interventions are key to building support which is sustainable, to really anticipate what someone needs.”

That sounds like they're hoping to promote more manipulaive 'management' techniques to try to cut the cost of MUS... I'd like to be confidence that Action for ME won't be willing accomplices.
 
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NelliePledge

Senior Member
Messages
807
Bibby and Kershaw (from Sheffield Hallam University) prepared an academic report on the economic cost of ME/CFS to the UK economy using information from AfME and MEA:

Bibby J & Kershaw A. (2003) How much is ME costing the country? Report prepared by the Survey and Statistical Research Centre, Sheffield Hallam University

BBC report at the time:
http://news.bbc.co.uk/1/hi/health/3014341.stm

The £3.5 billion per annum figure (loss of taxes, DWP benefit payments, GP and hospital costs, prescription only drug costs etc) was later updated but obviously remains very much a guesstimate

Back in 2015, the MEA decided that we should ask some health economists at LSHTM to produce some updated research on economic cost of ME/CFS

We had meetings etc and a research grant application was prepared

At around the same time, David Butcher from OHC gave a presentation to the Forward ME Group (FMG) about a research proposal on economic cost that would be carried out by 20/20 Health Group

FMG decided not to get involved and I don't think any of the FMG charities got involved on an individual basis - the MEA did not

But as the OHC was going to go ahead in any case, the MEA decided not to proceed with the LSHTM study

Dr Charles Shepherd
Hon Medical Adviser, MEA
So this 2003 paper said £3.5bn and nearly 15 years later the 20/20 report would have us believe £3.3bn or over £3bn as AFME put it.
seems unlikely
 
Messages
13,774
So this 2003 paper said £3.5bn and nearly 15 years later the 20/20 report would have us believe £3.3bn or over £3bn as AFME put it.
seems unlikely

Over that time, the rise of the biopsychosocial approach has meant that a diagnosis of ME/CFS is much more stigmatised. It wouldn't surprise me if people now did all they could to avoid having this as their primary diagnosis on benefit applications.
 

Daisymay

Senior Member
Messages
754
Over that time, the rise of the biopsychosocial approach has meant that a diagnosis of ME/CFS is much more stigmatised. It wouldn't surprise me if people now did all they could to avoid having this as their primary diagnosis on benefit applications.

And as for PWME going to their doctors for medical care, I suspect most of us avid doctors like the plague, so the cost of medical care for ME is much, much lower than for other chronic diseases.
 

Cinders66

Senior Member
Messages
494
I think as figures go it's a reasonable one, the MS society has £3.5b as their minimum figure for cost to society. Once you get into a few billion cost vs a few thousand pounds research investment it looks a bit silly. It's useful to have figures like this if you're trying to drive for investment in for better services and research, even if to say its cost to society is as high as MS etc. The issue is in uk we are not driving for the state to step up, we are either fighting against the bad things the state and medical profession try to do to us or trying to get research going DIY - first with the biobank and now with both IIME and MEA having their focus on two centres but getting there In The end with the small amount patents can raise isn't the the same as getting there in time for the waste of life already going on years. The state might not invest much into MS either but the uk MS society is currently funding 78 projects I think, some a million pounds or more.

We aren't lobbying for increased state research funds here, despite the Gibson report and then charities initially saying MRC had to continue rin -fencing until the field was established. When MRC said no to funds but have a conference our charity reps said ok then. We arent lobbying for increased funds for current services to reduce the waiting times or for better severe care either. What action for ME actually do all day puzzles me.

I read some of the optimum health report , the first pages seem to do what all these reports and the AFME reports etc do, point out the bad things we know of but nothing changes. It doesn't surprise me if they are doing this from a "we can do better than NHS approach", perhaps they can - prompt help, understanding, time and support without pressure to exercise alone would be an improvement over what many get. I haven't looked at the research they want to do. If it's just more management stuff it's not a surprise given what they do.
 
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Messages
13,774
The full report is here: http://www.theoptimumhealthclinic.com/wp-content/uploads/2017/09/Counting-the-Cost.pdf

I was only skimming through, but it looks like thoughtless shit, and intended to encourage more funding of the UK's dire 'specialist' services. I didn't pull out all the little annoying things in it, but thought I'd give people a flavour. MY main impression was: I hope no-one reads this, and I'm annoyed people got paid to write it.

It is also important to note significant disagreement between CFS/ME patient organisations and medical authorities on the nature of CFS/ME (see insert), which will be further confusing patients and potentially steering some away from specific treatment options (Hossenbaccus and White 2013).

It holds promise not just for patient outcomes, but could also resolve some of the disagreement between patient organisations and medical authorities on the nature of CFS/ME, which is confusing to patients and potentially steering some away from specific treatment options (Hossenbaccus & White 2013)

That paper is propaganda and BS from White. It's not patients who are 'confused', but those foolish enough to trust White.

A Steering Group (see Appendix C) met three times during the project period to ensure we maintained focus and rigour of research, and drew relevant, objective conclusions

Their steering group included Alastair Santhouse and Alex Howard. I didn't see anyone worthwhile on it.

Studies have shown that individuals are much more likely to experience symptom improvement, even full recovery, when treated (Cairns & Hotopf, 2005; White et al., 2013).

I don't think that Cairns paper does show that, and the White paper is the debunked PACE recovery one.

4.1 Therapeutic interventions The primary interventions for CFS/ME approved by NICE are cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Both involve a collaborative patient–clinician approach and have been shown, through randomised control trials, to be moderately effective treatments (Malouff et al., 2008; PACE, 2011).

Uncritical citing of PACE.

4.3 Dietary interventions and supplements A balanced diet with all the essential nutrients is of course vital for optimum health, and diet should be examined as part of a person’s overall CFS/ME assessment.

...

Supplements used by people with CFS/ME have included vitamin B12, vitamin C, magnesium, NADH (nicotinamide adenine dinucleotide) and multivitamins and minerals. While NICE does not approve their use for treating the symptoms of the condition, it admits that some people have reported finding these helpful as a part of a self-management strategy for their symptoms. NICE also recognises that some people with CFS/ME need supplements because of a restricted dietary intake or nutritional deficiencies (NICE, 1.4.7)

Whatever could the Optimum Health Clinic be hinting at? Funding for unevidence dietary 'treatments'?

In Scotland, NHS Greater Glasgow and Clyde (NHSGG&C) has set up the NHS Centre for Integrative Care, which provides a comprehensive 90-minute integrative CFS/ME assessment in the form of an outpatient clinic. A pathway is agreed with both the clinician and the patient, with programmes including Mindfulness Based Cognitive Therapy (MBCT); Moving into Balance (aiming to balance energy, rebuild stamina and reduce stress); and both Art therapy and Music therapy.
Source: 2020health correspondence with NHSGG&C, 2016.

What a way to use limited NHS funds. Who thinks that this is a sensible priority?

More research is required to understand the true value of specialised CFS/ME services as compared with ‘treatment as usual’ by non-specialists, as well as the medium to long-term cost benefits of such services. However, NICE has made clear that around half of all people with CFS/ME ‘need input from specialist services’ (NICE, 2007), such are the complexities and highly disabling effects of the condition. Moreover, we would not expect sufferers of (for example) MS, diabetes or heart failure to be advised, supported and treated by non-specialists. We should expect no less for people with CFS/ME.

The sometimes say things whihcc indicate recogntion that there's no good reason to think that specialist CFS services are useful... but then move on to calling for more to be spent on them.

Both NHS commissioners and central government need to reconsider funding decisions and organise CFS/ME services and research as appropriate to a treatable condition that has far-reaching societal and economic implications for the UK.

How treatable is CFS? What evidence is there on this? PACE?
 
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Messages
2,391
Location
UK
Could that be sarcasm?
Probably not ...

upload_2017-10-1_12-45-20.png
 

Dolphin

Senior Member
Messages
17,567
I don't think this 2003 report is available on-line anywhere -

It wasn't when we were looking at funding an economic cost study back in 2015 and John Bibby did not have an e-copy when I was in contact with him

I have a paper copy but it is quite long

I will see if we can get it into the MEA website external documents archive

If anyone can find an e-copy please let me know!

C
I previously looked for the full report but couldn't find it. Here is something I have.
'ME costs the nation over £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 cost£3,467m
* 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

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 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 Officer’s 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, 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 0207 329 2299
 

Attachments

  • Sheffield Hallam.pdf
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Dolphin

Senior Member
Messages
17,567
I previously looked for the full report but couldn't find it. Here is something I have.
Action for ME subsequently published a higher cost.

Economic Impact

A recent report by Sheffield Hallam University’s 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 aren’t 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 doesn’t welcome you back with open arms. I now earn less than £15K
per year.
 

Attachments

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Dolphin

Senior Member
Messages
17,567
The full report is here: http://www.theoptimumhealthclinic.com/wp-content/uploads/2017/09/Counting-the-Cost.pdf

I was only skimming through, but it looks like thoughtless shit, and intended to encourage more funding of the UK's dire 'specialist' services. I didn't pull out all the little annoying things in it, but thought I'd give people a flavour. MY main impression was: I hope no-one reads this, and I'm annoyed people got paid to write it.





That paper is propaganda and BS from White. It's not patients who are 'confused', but those foolish enough to trust White.



Their steering group included Alastair Santhouse and Alex Howard. I didn't see anyone worthwhile on it.



I don't think that Cairns paper does show that, and the White paper is the debunked PACE recovery one.



Uncritical citing of PACE.



Whatever could the Optimum Health Clinic be hinting at? Funding for unevidence dietary 'treatments'?



What a way to use limited NHS funds. Who thinks that this is a sensible priority?



The sometimes say things whihcc indicate recogntion that there's no good reason to think that specialist CFS services are useful... but then move on to calling for more to be spent on them.



How treatable is CFS? What evidence is there on this? PACE?
Thanks for summing this up. Yes it was frustrating reading it. You seem to have captured the sort of points I would have made.
 

Dolphin

Senior Member
Messages
17,567
The issue is in uk we are not driving for the state to step up, we are either fighting against the bad things the state and medical profession try to do to us or trying to get research going DIY - first with the biobank and now with both IIME and MEA having their focus on two centres but getting there In The end with the small amount patents can raise isn't the the same as getting there in time for the waste of life already going on years. The state might not invest much into MS either but the uk MS society is currently funding 78 projects I think, some a million pounds or more.
I don't accept that the estimated 250,000 people with ME and their millions of family members and friends in the UK can't raise a lot. (And others in other countries)

You highlight MS: I looked at their charities before around a decade ago and they were raising £13-15 million per year for research in the UK. Their condition is less prevalent.

I saw recently a family with ME raised £14,000 for IiME. My own family too has been involved in various fundraisers that together have raised many thousands. A lot more could be raised if people put their minds to it.
 
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Dolphin

Senior Member
Messages
17,567
The 2014/15 figure for DLA payments to individuals with
a primary disabling of CFS/ME has been released by the
DWP in response to a Freedom of Information request.16
The DWP estimates that there were some 14,000 CFS/
ME claimants with a case in payment on Disability Living
Allowance in 2014/15, at a cost of £64 million.
A problem here is that some people would already have been getting PIP instead.

They kind of refer to this later though not directly:
This
figure almost certainly falls short of the total paid out
by government in benefits related to CFS/ME, bearing
in mind additional costs associated with claimants of
(i) Personal Independence Payments (PIP), (ii) Carer’s
Allowance and Attendance Allowance, and (iii) housing
benefit, where these are due to CFS/ME as a primary
disabling condition.
I previously happened to save data showing the figures were a lot higher a few years earlier

Source: UK House of Commons
Date: December 19, 2012
URL:
http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm121219/text/12121
9w0001.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster


[Written Answers]

Chronic Fatigue Syndrome
------------------------

Kate Hoey

To ask the Secretary of State for Work and Pensions how many people with
chronic fatigue syndrome as their primary condition received (a) employment
and support allowance and (b) disability living allowance in (i) Vauxhall
constituency and
(ii) England and Wales since May 2010. [131482]


Mr Hoban

Information on how many people with chronic fatigue syndrome as their primary
health condition received employment and support allowance (ESA) is not
readily available and to provide this would incur disproportionate cost.

Information on the number of recipients of disability living allowance (DLA)
with main disabling condition of chronic fatigue syndrome by area from May
2012 to February 2012 is:

------------------------------------------------------------------
Area
------------------------------------------------------------------
Month England Wales Vauxhall parliamentary constituency
May 2010 28,200 1,800 -
May 2011 32,110 2,000 50
February 2012 34,910 2,130 60
------------------------------------------------------------------

Notes:
1. Caseload figures are rounded to the nearest 10. '-' denotes
nil or negligible.
2. February 2012 data are the latest available data.
3. DLA figures do not include people with entitlement where the
payment has been suspended for example if they are in hospital.
4. A diagnosed medical condition does not mean that someone is
automatically entitled to DLA. Entitlement is dependent on an
assessment of how much help someone needs with personal care
and/or mobility because of their disability. For example, a
customer would not be awarded DLA on the basis of a diagnosis
of chronic fatigue syndrome the decision is based upon the
care/supervision and difficulty getting around. These statistics
are only collected for administrative purposes.
5. Main Disabling Condition: Where more than one disability is
present only the main disabling condition is recorded.
Source: DWP Information Governance and Security Directorate: Work and Pensions
Longitudinal Study

--------
(c) 2012 Parliamentary copyright
 

Dolphin

Senior Member
Messages
17,567
This information is for specialist services only. If
the percentage receiving income benefits (now
called employment and support allowance (ESA))
is extrapolated to all working age adults with CFS/
ME, assuming a prevalence of 0.4%, then 27,747
adults would receive income benefits. This is a higher
number than that reported by the DWP of 21,120
people receiving income benefits under the category
of “other disorders of the brain”,15 in which CFS/ME
is included. If instead the assumption is that 13% of
working age adults accessing specialist services receive
ESA, and for those that access primary care only half
that, 6.5%, receive ESA, the total number of working
age adults with CFS/ME that receive ESA is 11,187.
I would be sceptical about using the figures for "other disorders of the brain".

I'm not an expert on ESA but I would think when the system is fully working the figures will be higher than 11,000.
 

Cinders66

Senior Member
Messages
494
I don't accept that the estimated 250,000 people with ME and their millions of family members and friends in the UK can't raise a lot. (And others in other countries)

You highlight MS: I looked at their charities before around a decade ago and they were raising £13-15 million per year in the UK. Their condition is less prevalent.

I saw recently a family with ME raised £14,000 for IiME. My own family too has been involved in various fundraisers that together have raised many thousands. A lot more could be raised if people put their minds to it.


Dolphin we will agree to disagree as we've discussed that a lot. CFS simply isn't established enough as a serious illness (and it's a complex message as some recover some live near death) and it's not classed as degenerative of the nervous system lIKE MS, and MS doesn't have six monthly cured by the mind or exercise media bonanzas either.
Even if you do think we could raise more , to date what we are raising is very low and we aren't in uk generally attracting philanthropists either. If more could be fundraised then charity fundraising reps should be tapping in. There's a problem somewhere?
There was a piece by a USA dr arguing CFS is a stigmatised illness which requires special measures which is what i believe
 

Dolphin

Senior Member
Messages
17,567
Impact of greater access and quality of care may be discernible well within a funding cycle. Commissioners and central government need to reconsider funding decisions and organise CFS/ME services and research as appropriate to a treatable condition that has far-reaching societal and economic implications for the UK.
There is a frustrating suggestion that occasionally appears in the text that the condition is treatable with existing therapies that are offered in the NHS services.
Studies have shown that individuals are much more likely to experience symptom improvement, even full recovery, when treated (Cairns & Hotopf, 2005; White et al., 2013 = PACE).

Since CFS/ME symptoms are similar to those present in a number of other medical conditions, diagnostic criteria recommend a process of ‘diagnosis by exclusion’ over a set period. This unfortunately leaves individuals suffering, and attempting to manage, symptoms for several months (at a minimum) before any treatment for recovery may even be considered. And yet, symptoms at early onset can be severe: manifestation of CFS/ME is not necessarily linear. Moreover, following referral to services, there may be a further wait of many months before treatment actually begins.
It is useful to be diagnosed early. But I don't accept people are missing out that much by there being a delay getting the treatments offered within NHS clinics.

Chronic conditions are a soft target in an age of NHS austerity, but for treatable conditions the decision not to invest can be a false economy.
 
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