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CFS: One Disease and Its Costs


Senior Member
By Llewellyn King

Published April 10, 2012 2:07 pm

What would happen to health care if a million new patients with just one of many now incurable and largely untreated diseases flooded the system, relying on medicine that could cost $70,000?

It might happen. Actually, it's more than desirable that it should happen.

In one instance, a million or more patients who suffer from the devastating, life-robbing disease known as Chronic Fatigue Syndrome (CFS), or myalgic encephalomyelitis, struggle through days of almost total incapacitation, disorientation, pain and despair, clinging to hope that science will rescue them. All that's known is that like AIDS, it's a disease of the immune system.

The horror of this affliction is almost indescribable. I've been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering.

The mother of an afflicted teenager told me that for New Year, her daughter went out for amid celebration. That exertion cost her two weeks in bed.

My friend and colleague (we host a YouTube channel, mecfsalert), Deborah Waroff, a New York-based writer, has been afflicted for 23 years and has seen her life confiscated. Like other patients she lives in a prison of her body with painful memories of when she was well. The body hurts, the memory tortures. Sleep does not refresh and long hours in bed do not heal.

Sufferers, held together in their pain by the Internet, trade sad notes. Going the rounds now is Winston Churchill's statement in old age his life was finished but not ended. One sufferer e-mails me that she prays every night that she won't wake up in the morning.

Patients groups say suicide rates are high. Determining the morbidity rate is a challenge because sufferers die from opportunistic infections rather than from CFS. In this, and other ways, it resembles AIDS and diabetes.

So far, the burden has been carried more by families and loved ones than by the health care industry. This is because there is no diagnosis per se for CFS, and no cure.

Dr. Andreas Kogelnik of the Open Medicine Institute in Mountain View, Calif., says there are no markers for the disease. There is nothing in the blood, marrow or soft tissue that identifies the disease.

Therefore, diagnosing the disease is by elimination a time-consuming undertaking that the present medical regime is ill-equipped to provide. You can't do much in 10 minutes, Kolgelnik says, referring to average amount of time allotted to patients by doctors.

So this is a disease that, even without a cure, the medical establishment has already indicated that it cannot afford.

The matter of affordability, for example, has affected diagnosis and treatment severely in the United Kingdom. There the National Health Service, always struggling with budgets, has encouraged doctors to teat CFS as a psychosomatic condition related to depression. The patients hate this and only recently has the British Medical Research Council softened its position.

That other medical nostrum, diet and exercise, is favored in the UK, too, but not by patients. They write to me constantly pointing out that exercise is corporal punishment for them; a recipe for relapse.

With only under-funded research scattered across the country at clinics and universities, the picture is bleak. But there are two pinpricks of light: a Norwegian cancer drug, Rituxan, which has helped patients in Norway and Germany, and a drug that is still in clinical trials in the United States, Ampligen, which rebalances the immune system.

Even those who administer the drugs, like Dr. Derek Enlander in New York and Kogelnik in California, don't hail them as panaceas but as hopeful pacesetters. Neither is available except to a few patients in trials. And cost? Ampligen costs about $25,000 for a year of treatment, and Rituxan comes in at a whopping $70,000.

A slew of other diseases await expensive cures. In the future health-care costs, no matter what the Supreme Court and the politicians do, are going to go up and up. To the sick and their families, any price is a small one.



Senior Member
Great article!

Does anyone know where the original quote for this is?
"Going the rounds now is Winston Churchill's statement in old age his life was finished but not ended."


Senior Member
The moderators of this site are extremely stingy about allowing comments. Both of the comments I have tried to post have been blocked.

First, the article assumes that the cost of an effective treatment for CFS is greater than the cost of business as usual. But, the CDC has found that the disease already costs the medical system $25,000 per year in healthcare costs per patient in the US, even though the status quo treatment options aren't really helping most people. And, there is a productivity loss of $20,000 per patient with CFS per year (basically half their earnings). The recovery rate is only 5%. Then, there is the cost of disability payments.

If you add up all these costs, Ampligen and Rituxan are bargains, at least for the subset of patients who respond to these drugs. Some patients get better for a prolonged period of time following treatment. A pharmaco-economic study of Ampligen-treated patients found that the drug saved money on average, largely because patients getting it had fewer hospitalizations and took fewer other medications than the control group.

My second point: the article exaggerates the cost of these treatments. The price of Ampligen has come down a lot. I took the drug in the open-label study from 2007-2008 and the cost was $2,400 for an 8 week supply- the total was about $13,000 for a year on the drug. Dr. K administers Rituxan in a series of six doses over the course of a year. The cost of the drug is $6,000 per dose. The total cost is $36,000 plus infusion costs. Rituxan also goes generic in 2015; the patent is expiring. It will probably cost half as much once generics are available.

With all due respect to Llewelen King's journalism, I think her argument that treating CFS patients is uneconomical but morally compelling is misleading. It is particularly likely to mislead governments concerned about lowering healthcare costs, like the UK government. Treating CFS patients is both good economics and morally right!


Senior Member
Logan, Queensland, Australia
Hi Satoshikasumi, I am not sure the economic are as you say. First, many on Ampligen recently are on lower doses which are automatically cheaper. I guess it depends on what doses are found to be most effective. Secondly, the cost of Rituximab is going to have to include monitoring and tests. That is not cheap either. My best guess is that for responders, and igoring full remission, its going to cost a lot more than a pension and associated medical bills. However, if these patients can work they will also be paying more tax and contributing to the economy - presuming they can find jobs in the current market - and that makes a difference too. Then there are flow-on effects. How many carers can go back to work? How many families can be properly supported and so not need state benefits?

I am hoping that Rituximab turns out to put most of us in full long term remission after multiple doses. Hopefully that is what they discover in the Phase 3 clinical trials.

Against this we have the push by some to reducing treatments and benefits to a small booklet and a message to go away. This will cost them maybe $20. That is where some of the CBT/GET claims seem to be heading. Forget thousands in medical costs, in some parts of the world a diagnosis of CFS means NO effective drug or treatment or test is covered by any insurance, its a guarantee of being cut off. That tendency is moving world-wide unless its fought although I do think that effective clinical trials are the best way to counter this tendency.

Oh, and Llewellyn is a male name, from Gaelic heritage I think. Bye, Alex


Senior Member
ha ha, as much as they would like to reduce the costs imposed by CFS sufferers to a $20 booklet and message to go away, it's not going to work. It already hasn't-- as much as the UK government has carefully crafted policies to shirk the needs of sufferers, they would be the first to admit that it is one of the most economically burdensome diseases on their system particularly for the young (#1 cause of long-term school absence in the UK! Why #1? Obviously, because the treatments available aren't doing a damn thing!)

At least on the severe end of the spectrum, CFS leads to complications and repeated hospitalizations. Spending just a couple of weeks in a hospital costs more than treatment with an immunomodulator for a year, with the ridiculous economics of hospital care. If they commit malpractice by sending patients to a mental ward instead, same thing. It is going to cost them way more than treating them with one drug.

Rituxan and Ampligen aren't inherently expensive. They are only expensive temporarily because they are patented.
Now, training an army of highly educated CBT therapists who have to spend hours and hours working with patients is inherently expensive.


Senior Member
Logan, Queensland, Australia
Hi satoshikasumi, yes and no. First, most of them seem to neither track nor care about many costs. What is happening in the UK is simple. We are being sent a message. No treatment. No tests. No drugs. No insurance. No benefits. If you are currently on state benefits you are being reassessed in the UK and those benefits are frequently suspended indefinitely. If you win the appeal against that then one month later they frequently start you on the road to losing benefits again. You are presuming they are rational. They have an agenda and are only rational within that agenda.

See here: http://victimsofatoscorruption.wordpress.com/
Be warned this site also includes publication of extreme views, but its enough to get the general idea.

If you object too strenuously you risk being sectioned, you can be subjected to forced institutionalization. This is often used punitively so far as I can see, and to terrorize patients into keeping quiet and conforming. There is a reason so many UK patients are afraid. While I do not doubt many UK psychiatrists view this as helping patients, many health workers use the threat of it to make patients compliant.

As for the treatments the issue, they claim, is that most attending school are NOT getting treatment, the recent study that claims substantive improvements (a Dutch study I think) will be used to push CBT/GET even further.

They do not appear to care about loss of school attendence. The system is apparently broken. They cannot even do good science - it costs too much. Instead they fund cheap science and cheap interventions - if they really cared, if they were serious, they would not go for the cheap and unlikely options. That dance will go on for many years yet unless the clinical trials of Rituximab, or some other approach (such as definitive diagnostic testing), show good results. To make things happen faster we have to make things change.

That doesn't mean their irrational position can't be opposed. More and more are understanding just how dogmatic and irrational they are. (They being the Coalition govt. in Britain, their institutions and their medical profession, especially in the CBT/GET school regarding CFS.)

As for training, many get almost no training just a standardized document. Those who assess patients for benefits get I think 8 weeks training - but their team is assessing thousands of patients rapidly. Its a standard form based assessment, with no allowance for complications or even medical reports in the UK. They pay lip service to medicine.

Here is what happens at the severe end all too often: you wind up in a psychiatric hospital. At its worst (and this is not everywhere) they don't feed you or medicate you much because you are faking or delusional, so they just walk around you if you are collapsed on the floor. If you can't feed yourself you are ignored. They even once threw an ME paralyzed boy in a pool to make him swim. He sank and needed reviving. The extreme lack of care often results in death - but they discharge you just before that happens. The death is not on their books. Have you watched Voices From The Shadows? It may cost much more to treat one patient this badly, but if it terrorizes ten into keeping silent and conformist those costs are amortized over 11 people.

The current GETSET trial gives patients a booklet. That is where they want this to go. Minimal cost. The Dutch study is all online - and in time it will likely be a computer driven tutorial.

If the system were rational the call to have Belgian treatment centres closed would have succeeded. This was by parliament. It was vetoed by the health minister I think. They have treated 862 patients over the last decade. Zero cures and the average patient got worse. They are still doing it. Does that sound rational to you? The UK is in a similar position. The terms of reference for the NICE review effectively prevented a rational outcome.

This is agenda driven medicine and public health care. Even if it is a LOT more expensive for CFS alone, and ME in particular, they are going to continue to ignore it as its the total cost of the approach, over many diseases, that is apparently driving this agenda.

There is another problem too. The book-keepers. To the health system its MUCH cheaper to ignore us. No tests, no treatments. They don't care about other costs. It looks good on their budgets.

To the government its much cheaper to deny benefits. One estimate is that 1000 died in the UK last year due to this (this is a denial to all disabled not just ME), and may be up to 32 per week now. It looks good on their books. They don't seem to consider it genocide.

To the UK doctors its what they are told. Sure the NICE guidelines are only a guideline. However if you don't follow them you can face sanction from the GMC. Its a guideline with teeth.

So to each organization, each insitution, each official faction, its MUCH cheaper to ignore us and do nothing.

Nobody is taking the big picture except us and a few isolated professionals. That is what government is supposed to do (otherwise why have a government) but they are failing.

You might like to read my blog on localized optimization versus global optimization:

If you think this is UK only, think again. The institutions and organizations driving this are global. If they haven't succeeded everywhere its because they have not had time and in some countries there is enough scepticism to stop them.

To give credit to USA doctors, they resoundingly rejected the attempts by the CDC to severely water down the Fukuda criteria. To give credit to Canada the CCC has made an impact. In time this may be enough to shift the balance, at least I hope so.

Bye, Alex


Senior Member
Somewhere near Glasgow, Scotland
Also, if any product gets wide enough desire, does not require rare resoruces, it's price plummets
"Economy of scale"
Over time, manufacturing systems/tech improves (this is why today most ordinary folk aren't in relative poverty in the West, because the actual cost of producing manufacturesd goods has continually kept downwards due to advancing tech etc, ie, cost of your TV stays the same ofr gets cheaper and gets much better in quality evne if wages remain much the same)
producing tiny amounts of a drug is very innefficient, producing lots = vastly improved effciency, so price drops

also this is only the FIRST major use of such a drug for ME, it's likely far more effective drugs will be found over time.