Market failure can be sign of fatigue

By Edward Hadas
June 11, 2014

By Edward Hadas

The author is a Reuters Breakingviews columnist. The opinions expressed are his own.

Modern economies work to meet consumers’ needs. So if needs are not met, that must be an economic failure, right? Healthcare suggests otherwise. Sometimes, unhelpful ideologies get in the way of economics delivering the goods.

Chronic fatigue syndrome (CFS) – also known as myalgic encephalopathy (ME) – is a case in point. The economic benefit of treating this difficult condition should be material for patients, drugmakers and society. Yet the treatment is poor.

CFS is still a mystery. It is identified mostly by its long list of symptoms, starting with persistent exhaustion. What seems to be happening is an interconnected network of malfunctions in the nervous, circulatory and digestive systems. Estimates of the number of sufferers vary greatly. Something like 0.1 percent of the population is plausible.

Medical ignorance reflects a lack of research, and the lack of research reflects a lack of professional respect. Despite the devastating effects on those who have it – many sufferers spend years bedridden – most doctors and funding agencies did not take the disease seriously until recently.

Even now, research funding is scarce and many doctors tell sufferers that there is nothing fundamentally wrong with them. Their symptoms are dismissed as physical manifestations of psychological difficulties. The psychological reductionism is not only medically irresponsible. It also doesn’t make sense in the modern economy.

CFS is the sort of complicated condition that our high-tech, high-expense healthcare is supposed to address well, or at least make a serious effort to do so. More crassly, this is a reasonably common disease that attacks many people in the prime of life. That makes it expensive in terms of lost activity and the cost of caring. And it looks like a disease which can only be dealt with by long courses of expensive drugs – just what pharmaceutical companies crave.

Why isn’t the healthcare industry – the delivery system, the research complex and the profit-seekers – more interested?

One theory is that the disease is not quite awful enough to catch the public’s attention. It rarely kills directly and it comes with few symptoms that show up well in pictures. A related suggestion is that the right celebrity endorsement has not yet come along. Many patients and their advocates see a malign conspiracy, aiming to empower psychiatrists or reduce disability payments.

There is something in all these explanations. However, the most important reason that this physical condition was left so long to the psychological crowd is intellectual: it does not fit with the traditional model of infectious disease.

The model was articulated in its crude form by the German bacteriologist Robert Koch in 1883. The principle is simple: the body is made ill by the invasion of some pathogen, an outside organism which disrupts the natural functioning of one or more systems. In other words, for each ailment there is a single external cause which can be identified and isolated.

In theory, scientists have steadily retreated from this model of “me against the invader.” It turns out that many pathogens are present in small quantities in healthy bodies and that many otherwise healthy substances in the body can turn toxic. The biological interactions are delicate and multi-faceted. The organism rarely works perfectly, so the boundary between well and ill is often fuzzy.

The newer theory has not been well translated into practice. The old biological model persists because it works so well for most of the conditions that doctors know how to treat. It also suits the standard specialised research methodology. CFS, which crosses systems and appears to involve many tiny failures, simply does not fit the Koch model.

Fortunately, the situation is improving. There are some scientists taking an interest, even if they have to rely on crowdfunding. The leading researchers do see the disease as a complex and multi-system failure. Their work could lead to a medical, intellectual and economic triumph.

But the severe lack of mainstream financial support is holding them back. That makes no sense, even on the crassest and narrowest economic calculation. Treatments or vaccines for CFS are likely to turn out to cost less than the value of the labour that is currently lost to the disease. And such a narrow weighing of benefits and costs probably understates the upside. For one thing, there could be collateral economic gains if CFS research leads to a better understanding of other debilitating conditions.

There is also a less concrete but ultimately more important motivation. Knowledge is a human good, and one of the virtues of the modern industrial economy is that it has created and paid for much more of this good. A deeper understanding of chronic fatigue syndrome would almost certainly add ever more, by developing a better idea of how the human body functions. Even if no cure is found, the knowledge itself is a worthy economic goal.

 

14 comments

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The lack of funding and support for Chronic Fatigue Syndrome – which about a million people in the US have – and which, according to CDC studies, cost the US economy from 15-20 billion dollars a year, has perplexed people with ME/CFS for decades. Many disorders with far less impact receive much more money than ME/CFS in funding. Isn’t it in the governments own best interest to spend some money on this disorder?

Obviously the answer to that is yes, but the federal govt clearly doesn’t allocate money according to need or include economic factors in it’s calculations. Something else is driving their decisions.

I submit there are several factors some of which were mentioned in this most thought provoking article. (1)Chronic fatigue syndrome (ME/CFS) leaves many disabled for life but it it’s not a killer like cancer or heart disease is.
(2) ME/CFS primarily affects women
(3) It’s a complex multisystem illness; researchers don’t like to take those on

If you put those three factors together you find an array of disorders all of which get very poor funding from government, all of which cause enormous amounts of distress and disability (but rarely death), which effect millions of mostly women and pose high medical and economic costs and all of which are difficult to treat and understand.

They are ME/CFS, Fibromyalgia, IBS, Interstitial cystitis, TMJ and some others. They are last great bunch of mostly women’s disorders that the medical establishment – which has historically done very poorly by women – has ignored.

Posted by Cort_Johnson | Report as abusive

Mr. Hades,

As a 30+year patient and a mom of a kid diagnosed with the simplistic CFS, I so appreciate your comments. I was an at risk high school teacher with commendations. I earned my graduate degree and I would have kept teaching if I had been able to climb the stairs to my classroom. The worst part was knowing that I was incompetent to attend to the needs of the students in my classroom. I was weak, had short term memory problems and often times when I was listening to a student, I could not process what the kid was saying. DUH.

My income loss devastated our family for about 10 years. I have been on SSDI since 1989. I do not know anyone who works full time, a few may work part time, but the rest of us can not work. Think about those calculations of disability money in the economic equation.

A second loss? Students. I was a good teacher, not easy, GOOD. Forced retirement was not in my playbook. Clients? I know too many people at home in bed who earned an advanced degree to DO something for the common good.

The third and greatest loss is the death of our son, diagnosed at age 9 and again at age 15. He managed to get a tech school Liberal Arts degree before he died at the age of 23 (July 4, 2005.) Viral Myocarditis. YES, in my 30 + years, our son is not the only one who has passed away too soon. That same year we lost 2 group leaders to cancer and one to liver failure.

3 generations in, it is obscene that I have to think about any of our 3 beautiful grandchildren becoming ill. YES..KIDS GET HORRIBLY ILL. And still in 2014, we have few answers and no recognized treatment. We pray for the doctors and privately funded researchers to continue to make progress. They are aging, too. The NIH does support a small percentage of funding for research. They say it is about 5 million dollars.

You are correct about economic loss. You are correct about the fact that we do not die fast enough or at least do it properly to be noticed.

HAPPY that you noticed. BIG SMILE.
THANK YOU from the WI ME and CFS ASSOCIATION, INC. (since 1987)

Posted by patfero | Report as abusive

Honestly, I think drug manufactures, like doctors, just don’t know where to start. Most likely CFS is not even a single illness but symptoms that cover a variety of illnesses that simply aren’t understood yet. The profits aren’t clear. Millions-billions of dollars can go into researching treatments and these companies don’t know if anything will come of it. Even if they develop a treatment that cured a subset of people with CFS, until they have tests to prove what type of cfs (or what actual illness) those people have, its not profitable. It would still only work on a small percentage of patients which might be hard to differentiate from the placebo effect. — Plus, our society currently treats doctors like Gods. The very idea that someone can be extremely ill, in extreme pain, and disabled without doctors being able to find the dysfunction… doesn’t bring out curiosity, it brings about denial which often leads to psych referrals. The extreme stress of being so sick with no treatment, dismissive doctors that cause dismissive family and friends, and often the inability to care for oneself inevitably leads to depression, anxiety, and often suicidal feelings which then make it harder to differentiate fatigue due to mental vs physical illness. Until doctors face how much we still don’t know and listen to patients complaints over their own egos, CFS patients will be ignored.

Posted by audrig | Report as abusive

“Medical ignorance reflects a lack of research, and the lack of research reflects a lack of professional respect. ”
—————————————-

I couldn’t agree more.
I am a survivor of the 1985 Incline Village “mystery illness” and a patient-prototype for CFS.

As told in Dr. Ritchie Shoemakers 2005 book “Mold Warriors” Chapt 23, “Mold at Ground Zero for CFS”…
NOT ONE SINGLE CFS RESEARCHER EVER LOOKED AT THE VERY FIRST DOCUMENTED CLUE IN THE SYNDROME!

An absolutely unbelievable state of affairs,
yet perfectly true!

“Sincere interest in CFS” can easily be measured by whether a CFS researcher responds to the offer to obtain clues from a direct original source for this syndrome.
“No interest = No sincerity”

As of this date, Dr. Ritchie Shoemaker remains the sole researcher in the entire world to show respect for the accepted methodology of science.

Posted by Erikmoldwarrior | Report as abusive

“Medical ignorance reflects a lack of research, and the lack of research reflects a lack of professional respect. ”
—————————————-

I couldn’t agree more.
I am a survivor of the 1985 Incline Village “mystery illness” and a patient-prototype for CFS.

As told in Dr. Ritchie Shoemakers 2005 book “Mold Warriors” Chapt 23, “Mold at Ground Zero for CFS”…
NOT ONE SINGLE CFS RESEARCHER EVER LOOKED AT THE VERY FIRST DOCUMENTED CLUE IN THE SYNDROME!

An absolutely unbelievable state of affairs,
yet perfectly true!

“Sincere interest in CFS” can easily be measured by whether a CFS researcher responds to the offer to obtain clues from a direct original source for this syndrome.
“No interest = No sincerity”

As of this date, Dr. Ritchie Shoemaker remains the sole researcher in the entire world to show respect for the accepted methodology of science.

Posted by Erikmoldwarrior | Report as abusive

Thank you for that great piece and for covering ME/CFS! It is so true what you are writing – the great suffering of ME/CFS makes no sense – not only in a moral perspective but also financially. We are grateful for article like yours which point that out.

Posted by CarolineD | Report as abusive

Thank you for shining a much-needed light on this tragic situation.

I worked in the pharmaceutical industry for over thirty years and retired when my 22-year-old son was struck down after backpacking in Asia. Virtually overnight, he went from Phi Beta Kappa to bedbound in the dark, unable to read or write.

I saw the problem you describe play out in my career. For the first 20 years, much of research was driven by fairly simple biological models looking for single bugs or single drug targets in the body. Those approaches don’t work in complex diseases where a much deeper understanding of disease biology is necessary. In the last 10 years, pharma has tried to address this problem in part with a network of collaborations with academic centers that bring that knowledge to the table.

But as you say, thirty years ago, when that single target or bug didn’t surface, the complexity of this disease made it ripe for take over by the psychologists who ignored hallmark symptoms and simplistically reframed this disease as a problem of medically unexplained chronic fatigue. In fact, one CFS disease definition in use today requires nothing more than only 6 months of debilitating chronic fatigue and allows primary psychiatric disorder. Depending on the researcher or clinician, the term “CFS” today encompasses any number of biologically unrelated fatiguing conditions – deconditioning, depression, a wastebin of unexplained chronic fatigue and also the devastating, complex, multi-system illness originally called myalgic encephalomyelitis (ME).

This man-made heterogeneity of “CFS” has obscured the very nature of ME, the disease that scientists originally set out to study thirty years ago. This is bad science that has made it impossible to make progress in research no matter what intellectual framework you use.

To make progress in R&D and to halt the medical abuse that ME patients experience today, this disease must be approached from the more nuanced and richer scientific framework that you have called for. But first, we need to peel away the layers of bad science created by these overly broad CFS definitions so that we can see the disease for what it really is.

Posted by MaryDimmock | Report as abusive

The lack of funding and support for Chronic Fatigue Syndrome – which about a million people in the US have – and which, according to CDC studies, cost the US economy from 15-20 billion dollars a year, has perplexed people with ME/CFS for decades. Many disorders with far less impact receive much more money than ME/CFS in funding. Isn’t it in the governments own best interest to spend some money on this disorder?

Obviously the answer to that is yes, but the federal govt clearly doesn’t allocate money according to need or include economic factors in it’s calculations. Something else is driving their decisions.

I submit there are several factors some of which were mentioned in this most thought provoking article. (1)Chronic fatigue syndrome (ME/CFS) leaves many disabled for life but it it’s not a killer like cancer or heart disease is.
(2) ME/CFS primarily affects women
(3) It’s a complex multisystem illness; researchers don’t like to take those on

If you put those three factors together you find an array of disorders all of which get very poor funding from government, all of which cause enormous amounts of distress and disability (but rarely death), which effect millions of mostly women and pose high medical and economic costs and all of which are difficult to treat and understand.

They are ME/CFS, Fibromyalgia, IBS, Interstitial cystitis, TMJ and some others. They are last great bunch of mostly women’s disorders that the medical establishment – which has historically done very poorly by women – has ignored.

Posted by Cort_Johnson | Report as abusive

Very interesting and supportive article. But like most articles, the authors state that Chronic Fatigue Syndrome symptoms begin with exhaustion. It doesn’t; sufferers like us remember the very day we we’re struck down by flu-like symptoms, even though that may have been thirty years ago. And these flu-like symptoms are consistently over-looked by doctors and specialists (even when we try to remind them that is how we first became ill with this severe and debilitating illness). It is no wonder this illness is not taken seriously. As Sherlock Holmes stated, “… when you have eliminated the impossible, whatever remains, however improbable, must be the truth?”

Posted by Darius198 | Report as abusive

Mr Hadas,

Thank you for this article, which I think is one of the best I have read in recent years.

It really captures the essence of the problem we face as patients trying to gain acceptance for our disability and when seeking more effective treatments and greater knowledge, and it also I think highlights some of the problems that those who are brave enough to try and understand what it is that might be causing ME also face when confronted by systems that have failed to adapt.

I am grateful for the scientists and clinicians who are tackling the disease that I have had for 15 years, and none more so than those who work as part of the Chronic Fatigue Initiative, notably Mady Hornig and Ian Lipkin from Columbia.

Talking as you were of crowdfunding, I can think of no better campaign to support at present than The Microbe Discovery Project: http://www.microbediscovery.org/

I sincerely hope that with everyone’s help we can ensure Dr Lipkin and his team are at least able to continue to put pieces of the jigsaw together with high quality research, and that one day we might gain those elusive treatments for this devastating biomedical condition.

Thank you again.

Posted by Firestormm | Report as abusive

Thank you for that terrific, insightful piece about this illness.

CFS is a difficult illness to research, but as you point out, the cost of developing treatments is likely to be a lot less than the cost to the economy of so many people losing their prime productive years.

Posted by SimonMcGrath | Report as abusive

Appreciate your article very much. Please write more if you can. As a 30 year survivor, Words cannot explain how serious this illness is. With over 65 symptoms, one never knows, from day to day, what their condition will be.

Very grateful for any new research that is reported. In the past year they have begun to realize how serious this is. One famous researcher, says, she would rather have HIV than CFIDS/ME/FM.

Posted by maryannb27 | Report as abusive

Mr. Hadas,
I wanted to thank you for your article, as many other PWME and their carers have already done and exhort you to continue to write about ME/CFS and help expose all the past failings, but especially unearth what can and should be done.
Our is one of the stories of great human suffering that needs to be told, we need you as much as we need Mr. Llwellyn King’s writings to help us raise public awareness. We can only hope that governments’ funding and good science will follow, until today, as you very well explained, it hasn’t happened.
I will close by quoting George Orwell: ” Journalism is printing what someone else does not want printed: everything else is public relations.”
Please keep up your excellent journalistic work and look far and wide where doctors and researcher are working tirelessly and frequently with very little money in the ME field.
The Dr. Montoyas and Dr. Davis at Stanford, Dr. Kogelnik at the OMI, Dr. Peterson at Simarron Research, just to name a few, and many others that you might already know about.

Thank you again.

Posted by ValeBodi | Report as abusive

At last some sense about ME.

Yes, you don’t die of ME but you don’t die of RA or any number of other illnesses that receive huge research grants.

The number one reason no progress has been made in the 27 years since I became severely disabled by ME is that the original disease has been hijacked by every fatigue syndrome under the sun.

Yes, psychiatrists have wrongly diagnosed physically ill people as mentally ill, but the fact is that many ‘CFS’ patients have recovered from psychological interventions, so we know that they were not physically ill (you can’t cure ME or cancer with psychological treatments). This then lends further support to the psychogenic model which leaves the physically ill with nothing but a damaging label round their necks.

The severe sufferer hidden from view – and often neglected by even the ME charities – can only look on appalled at the lack of focus on those worst affected when other diseases such as MS push their severe sufferers to the front of their cause thereby legitimising and encouraging funding for research based on the public’s sympathy.

And we’re not getting a clear picture either from the research that is done because those who are truly ill are unable to attend hospitals to participate in any trials. We are too ill.

Posted by mrssmith | Report as abusive