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

anni66

mum to ME daughter
Messages
563
Location
scotland
I think Alex is a decent guy from the outside point of view - but he is a business man, lets be clear, he went straight from Uni down to London, hired a room in Harley Street (man of the people) and started selling himself basically, because he had no professional or clinical quals to work from. He said he got himself better via diet, meditation and so on (which I celebrate); but unfortunately this can lull people like Alex into thinking they understand ME/CFS. He may well get many many people better who have general fatigue and burnout.

Like all good business men he is looking for business - the NHS is a perfect pool of new clients, 'if they cant help ME/CFS patients, he will' - type thing. This is where I think he will struggle, the Psych people wont give CFS patients over to Alex too easily, and I would advise the NHS not to either. The NHS should be offering better care to ME/CFS patients - then Alex can offer complementary care for those who want it -privately.

I know Alex will read this via himself or one of his staff - usually his ex clients (who now work for him - converts to this methods).

Alex and I share something, we both studied in South Wales and were probably in Uni at the same time and we both walked down Swansea beach a good few times -when I visited there.

Alex has many little ventures - this is his latest ------ lets keep an eye on this space
My aunt spent thousands at Optimum health and went frm moderate to severe. The only plus point for her is that she could access tests not available on NHS , that sadly were as much use as the NHS ones. Once it was clear that their treatment protocol was not doing anything, they tried very hard to discourage her frm continuing ( probably a good idea) .
 

Jonathan Edwards

"Gibberish"
Messages
5,256
To me it is interesting that this seems to be a sort of amateur version of the King's/Bart's/Bristol group story. Almost a pastiche of the 'professionals'. Finding a way of making money and then thinking of some plausible sounding 'treatments' to do it with. Simon Wessely has warned against these amateurs getting in on the game. The NHS has finally called time on the homeopaths. If they open up to this sort of thing then the absurdity of the NICE position gets more and more apparent. Sooner or later someone is going to need to provide evidence for one sort of 'therapy' being better than another, otherwise Dr Chalder will have no justification for her qualifications. But at the moment the trend seems to be to show that email is just as good. I have a feeling it will all end in tears for all of them one day.
 

markielock

Senior Member
Messages
319
I already know the answer: £0.00.

  • We get next to no public healthcare support (even private options are few and far between),
  • you're more likely to be trampled by a stampede of antelope in the middle of London than receive PIP or ESA or for the benefits system to even acknowledge you're disabled,
  • it's a poorly funded research area.
Hopefully they'll turn around and go "Oh, actually, I think this is a rather overlooked problem. Let's help these people!".

Instead of wasting the little money they're putting in to the problem on snake oil salesman, perhaps hire someone who can objectively research the big picture of CFS/ME and inform them on how to spend/prioritise their funding....
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Like all good business men he is looking for business - the NHS is a perfect pool of new clients

In principle I object to private business partnerships with the NHS. They are technically now a charity, but I agree Alex H has entrepreneurial oomph as a style of outlook. To give the benefit of the doubt though as well, I think they are genuinely frustrated that their clients can't afford treatment because they believe they can help (as well as to make a living). When I was a client, cost was prohibitive but most of what I paid went directly to the supplements suppliers, rather than OHC themselves. This is obviously different for the psychology side, which I didn't do.

In my world, health care is free.

Health care should be seen as a human right not just for those who can afford it.

This is the main argument pro OHC being on the NHS. It could also benefit us too: we could do the nutrition side and get supplements for free and ignore other elements. The diet and supplements they suggest are pretty similar to what people suggest here eg emphasis on mitochondrial function, cutting down carbs.

I don't genuinely think this is a good plan long term though BTW ;) I don't think it would advance ME politics in the right direction.

If you want to understand them better this diagram is a start

IMG_2574.png

From the booklet http://www.theoptimumhealthclinic.com/str/ME_in_the_21st_century.pdf
I don't think it's a million miles away from what most of us would say, but there's proportionally more emphasis on Psychology/personality/stress factors in how they conceptualise onset and perpetuating factors (which personally I think would be no more relevant than for any other chronic illness, by which I mean not irrelevant but not likely important either).
 
Last edited:
I already know the answer: £0.00.

  • We get next to no public healthcare support (even private options are few and far between),
  • you're more likely to be trampled by a stampede of antelope in the middle of London than receive PIP or ESA or for the benefits system to even acknowledge you're disabled,
  • it's a poorly funded research area.
Hopefully they'll turn around and go "Oh, actually, I think this is a rather overlooked problem. Let's help these people!".

Instead of wasting the little money they're putting in to the problem on snake oil salesman, perhaps hire someone who can objectively research the big picture of CFS/ME and inform them on how to spend/prioritise their funding....
While I understand the sentiment here, this is incorrect.
  • During the early years of our illness, we make use of the NHS (doctors appointments, blood tests etc etc) far more than is typical, therefore costing the state more.
  • While there are many reports of PwME struggling to get benefits, there are also many people who are in receipt of benefit payments, therefore there is that cost to the state.
  • Can't disagree that it's poorly funded but any funding is a cost to the economy, albeit one that needs to be compared to the other costs caused by ME.
  • Additionally, there are the lost earnings, and therefore tax revenue, of those who cannot work. That is a large cost to the economy.
  • Also the potential lost earnings of those people who care for PwME.
While I have my doubts about the motives of the people behind this report, potentially it could be useful if it highlights again the massive cost to the economy of having some many of the population unable to function at the same level as healthy people.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
lost earnings, and therefore tax revenue

This is a big one given how long it goes on as well. I've lost loads of potential earnings over 19 years, even in the years I was able to work part time (less paid hours but also lack of opportunity for promotion in part time jobs).

The lack of funding for biomedical research looks even more crazy in this context, in pure economic terms, even if the government doesn't care about our quality of life.
 
This is a big one given how long it goes on as well. I've lost loads of potential earnings over 19 years, even in the years I was able to work part time (less paid hours but also lack of opportunity for promotion in part time jobs).

The lack of funding for biomedical research looks even more crazy in this context, in pure economic terms, even if the government doesn't care about our quality of life.
I personally think this is an argument that needs to be used more, especially when we are trying to get the Tories to take action in the UK. It's pretty obvious that they couldn't give two monkeys about suffering of a significant part of the population, but if we can convince them that the same part of the population can be turned from net consumers to net contributors through an investment into research, we might actually see progress.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
This is a big one given how long it goes on as well. I've lost loads of potential earnings over 19 years, even in the years I was able to work part time (less paid hours but also lack of opportunity for promotion in part time jobs).

The lack of funding for biomedical research looks even more crazy in this context, in pure economic terms, even if the government doesn't care about our quality of life.

I'm sorry but such the loss of notional tax revenue is not a loss, or we could have reports on how much the fact that everyone isn't the chairman of ICI is costing the economy in lost taxes, and action plans on how to make everyone the chairman of ICI, or how much revenue is lost because graveyards, parks or fields exist - granted more might be made if they were all zoned, built on and sold to the rich - but that doesn't mean that not doing so is costing money.

Not making money is not a loss, it's not even a cost. Other aspects of the situation, yes they are a loss, but tax revenue, no.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@Wonko I disagree, your example isn't what I mean. I toted it up for myself a few years ago. I didn't assume I'd have become chair of ICI, I worked it out based on my qualifications and a fairly standard salary e.g. What friends with similar qualifications were earning. This isn't pie in the sky thinking, it's what we'd earn if well.

For advocacy purposes this is definitely a useful concept of loss.
 
I'm sorry but such the loss of notional tax revenue is not a loss, or we could have reports on how much the fact that everyone isn't the chairman of ICI is costing the economy in lost taxes, and action plans on how to make everyone the chairman of ICI, or how much revenue is lost because graveyards, parks or fields exist - granted more might be made if they were all zoned, built on and sold to the rich - but that doesn't mean that not doing so is costing money.

Not making money is not a loss, it's not even a cost. Other aspects of the situation, yes they are a loss, but tax revenue, no.
Please expand on which other aspects you consider are a loss, as at the moment I don't follow your argument.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
Please expand on which other aspects you consider are a loss, as at the moment I don't follow your argument.
Personal loss of income, possible/probably loss/reduction of family members income, health costs, even (theoretically/possibly - as most people will have paid in, so it's not a loss, it's reclaiming) benefits - that sort of thing. What can't be counted as a loss is notional tax income IMO - it's notional, not real.
 
Personal loss of income, possible/probably loss/reduction of family members income, health costs, even (theoretically/possibly - as most people will have paid in, so it's not a loss, it's reclaiming) benefits - that sort of thing. What can't be counted as a loss is notional tax income IMO - it's notional, not real.
But it's as real as loss of personal income surely? If we can agree that there is a loss of personal income at a certain level (some national average or some such, not chairman of ICI level) then, as long as that level is high enough to be taxed, there is a loss to the state of that theoretical tax income. Otherwise the argument would seem to imply that if healthy and employed, we successfully avoid paying any and all taxes.
 

charles shepherd

Senior Member
Messages
2,239
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
 
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
Charles, I know this isn't available online but is this available offline in any way, that you know of?
 

charles shepherd

Senior Member
Messages
2,239
Charles, I know this isn't available online but is this available offline in any way, that you know of?

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
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Please expand on which other aspects you consider are a loss, as at the moment I don't follow your argument.

Taxation income isn't counted as separate as it would be double counting - only potential pretax income is counted.

You could make an argument for an economic multiplier effect for income tax, but the conservatives will hunt you and your family down if you do.