The TRUE Cost of CFS

CDC has been espousing the number $9B a year in economic losses due to CFS.  Dr. Leonard Jason, CFS expert, proposes the true number is more than double that estimate.

Is Anyone Out There Listening? The Economic Costs of CFS.

Leonard Jason, L. Valentine, S. Torres-Harding, A. Johnson, M. Benton, N. Porter.

The economic impact of Chronic Fatigue Syndrome in a community based versus a tertiary sample.

We already have an assessment of the indirect costs of CFS - those caused by unemployment, disability, etc. - to the U.S. economy. They came out to a hefty 9.1 billion, yes BILLION dollars a year.

Now Dr. Jason, with his study on the direct costs of CFS - medical costs - is able to give us, for the first time, an estimate of the total annual losses to the U.S. economy from CFS.

These costs are, of course, heavily affected by estimates of CFS prevalence. Dr. Jason's history of prevalence estimates was quite instructive; they started out absurdly low with early estimates suggesting about 20,000 CFS patients in the U.S. Jason's small early 1990s community based study bumped that up significantly (400,000), and his replication of that study doubled it again (800,000). The late 1990s CDC Wichita study confirmed Jason's estimates (800,000-1,000,000) and Jason used 880,000 as the basis for economic cost calculations.

With the direct economic costs added, Jason estimates that CFS costs the U.S. economy a whopping 19-25 billion dollars a year. This is about double the amount that prompted the Japanese government to sponsor a large CFS research program.

These numbers suggest that if the Department of Health and Human Services woke up it would at the very least realize that investing in CFS research makes economic sense and would start funding CFS like the substantial health issue it is. Somebody in the DHHS, after all, wants to know how damaging this disease is - they sponsored the first economic loss estimate (via the CDC) and must have paid for this one too - now if only they would act on it.

With the CDC program winding down and the NIH research program essentially moribund, DHHS spending on CFS could be as low as $10,000,000 - or about what it commits to several very (very) rare genetic diseases.

* * * *

$10M -- that's $10 per patient.  Big deal. 

The Social Security taxes alone on even the erroneous $9B figure (much less the more accurate $25B number) exceed that expenditure by orders of magnitude.  Add in the income taxes, sales taxes, property taxes, etc. that could be paid by returning that million patients to work, and the return on investment is incredible.

Yet, even now that privately-funded researchers are closing in on the biological factors of this disease, the US government refuses to fund a full-scale push to tie these loose ends together.  They'd rather leave a million people sick and draining the economy than spend even 1% of the annual cost looking for a treatment/cure.

Want to know why?  Read "Osler's Web" by Hillary Johnson.  You'll learn exactly why the government doesn't want to find the biological underpinnings of this disease, doesn't want to admit there's a virus at the base of it, wants to pin it all on "stress".  The answer is simple, and self-serving.  It's all tied up in egos and arrogance.

Tags: CFS, research, funding, biological, treatment, cure, taxes

Telling half the story with twice the people

One thing that we've noticed is that essentially all the books about living with disability praise to the high heavens spouses, children or parents who attend to the disabled person's every need.

Laura Hillenbrand's inspirational story of writing "Seabiscuit" while coping with severe CFS reveals that Laura wrote much of it with such vertigo that she couldn't sit up (much less stand up to get to the kitchen for a bowl of cereal), so her boyfriend made innumerable trips to the library to get research materials for her.  (As well as seeing to it that she had clean laundry and proper meals brought to her in bed.)

But what of the many people who face disability alone?  Roughly 3/4 of marriages affected by chronic illness break up.  A fellow activist recalls seeing a statistic that the divorce rate is more like 90% when it's the wife who becomes ill.  Most autoimmune illnesses, as well as CFS, strike far more women than men, so that's a lot of divorced patients!

Those millions of divorced women suffer, too, but unnoticed by the media, unable to write books about their plight.  Whereas Laura could stay in bed to write and have food brought to her, at my worst I still had to stumble to the kitchen to feed myself and the cats.  Every bit of energy I had was consumed with essential tasks: cooking, laundry, dishes -- things that the book-writers among us don't have to deal with because they have a healthy person in residence to take care of the chores. 

Another author describes, while she was essentially bedridden, having someone draw her bath, fetch her from the bedroom, help her in, gently wash her, help her out, pat her dry, dress her in a clean nightie, and assist her back to bed, where she collapsed from the effort of having someone else do all the work for her; I read that section with envy -- as much as I love a nice hot bubble bath, if I'm too weak to safely get myself in and out of the tub, I can't take one because I might get stuck in the tub.  If you've ever sat in icy water in a chilly bathtub in a rapidly-cooling bathroom for hours because your feeble attempts to boost yourself out of the tub are unsuccessful, it's NOT something that you want to experience a second time!  That occurred at a time when the person with my emergency house key was out of town, so I couldn't even call for help (not that my male friends strong enough to get me out of the tub would feel comfortable seeing me wearing nothing but bubbles).

Laura had a boyfriend who went to the library for her.  As I was getting progressively worse, I bravely accepted a quick research/writing project which required a trip to the library.  I spent the next week horizontal, recuperating from a three-mile round-trip, for the first several days so exhausted that I couldn't concentrate on the books that I'd brought home.  I knew the books were written in English, but when I picked them up they appeared to be written in Russian.  The alphabet looked foreign, and only with the utmost effort could I pick out one or two words on a page.  If only I'd had someone to make that trip to the library for me, I could've taken on more such projects, but it's hard to make a living when you need to take a week off every time you venture out of the house to get more research material.  (Obviously, being in that condition makes it darn hard to get a boyfriend who will make those trips for you, if you didn't have one already before you got sick.)

When I'm sick, no one empties my barf bucket (except me).  No one places a cold compress on my head while they go to the kitchen to cook up a nice organic, preservative-free chicken soup to nourish me back to health.  No one even brings me a glass of water.  If I'm too sick to get out of bed, I do without food and water, which is no way to get better.  But I have no choice.  I have no spouse, no children, no siblings, my parents are 3000 miles away with their own health problems, and my former girlfriends always claim to be "too busy" when I call to ask for help (they all have full-time jobs, most have both husbands and children -- all have at least one or the other -- so it's a plausible excuse).

I've learned to keep a box of cereal bars or PopTarts under the bed and a couple bottles of water in easy reach, but if being bedridden lasts more than a day or two, those supplies run out and there's no one to replenish them.

And without a husband, the only money coming in is the few hundred a month that I can earn working part-time.  There's no extra money to hire help, finances are a constant worry (so much for the doctors telling me to reduce stress!), and I have to work as much as possible to keep the bills paid, which means less time available for writing books (which might be more lucrative in the long run, but don't bring in any money till they're done or almost done).  I've reached the point of having a steady clientele, and turning down work that pays now in order to write a book that may or may not bring in some money later seems foolish.

I had to accept substandard medical care because there was no healthy person to strenuously advocate for me; I could make feeble protests, but gave up after a minute or two because I didn't have the energy to keep arguing.  Obviously, there was nothing even mildly threatening about a woman collapsed on an exam table, as opposed to some of the more visible patients who tell stories about large husbands making viable physical threats against recalcitrant doctors.  They knew they could easily out-stubborn me because I wouldn't have enough energy to pitch a prolonged battle over treatment (or lack thereof).  There was no husband to pick me up and carry me into the doctor's office on my worst days to show them what I'm like when I'm not well enough to get myself there on my own, so they had a skewed picture of what I'm like most of the time because they only saw me on good days, after I'd rested up for a week to ensure that I could get to the appointment.  There was no one to spend hours calling around to find a lawyer willing to take the medical malpractice case when I had deteriorated from lack of proper treatment to the point that I was almost totally non-functional.

The point is, next time you read one of those inspirational books about living with disability, consider how much actual "hardship" is involved when the household has a steady paycheck coming in from a healthy spouse, and healthy children available to run errands and provide caregiving, vis-a-vis the innumerable "silent majority" among us who are facing disability with no money, no help, no caregiver. 

Those books wouldn't be written, and their writers wouldn't be so cheery about coping with a major disability, if they were in the shoes of the millions of disabled people who are forced to do everything for themselves no matter how sick they are, or how much pain they're in.

 

Tags: CFS, autoimmune, disability, caregiver, book, writing, writer, inspirational, marriage, divorce

Disproportionate Research Funding

Parade Magazine was asking for comments to be sent to Congress about healthcare in the US.  Here are mine:

Gross imbalance between cost of illness and research funding

By CFSfacts on 3/12/2007 2:46:PM

A million Americans suffer from Chronic Fatigue Syndrome, known as Myalgic Encephalomyelitis in the rest of the English-speaking world. The symptoms are very similar to MS, and some researchers believe the same virus is implicated in both conditions. CFS affects more than twice as many people as MS.

A very conservative estimate is that CFS costs the US economy over $9B a year. Yet, only about $6M a year is devoted to research that might get these million patients back to productive work.

If only 1% of the lost productivity were budgeted to finding a viable treatment/cure for CFS, far more than that investment would be repaid in taxes when that million people return to productive work.

I have been told that because I wasn't given effective treatment promptly, the physical deterioration is now too advanced for me to ever return to full-time work. Instead of my paying taxes on nearly two million dollars of earned income over the rest of my working life, I will spend the rest of my life working part-time, earning below the poverty level and paying no income taxes at all.

Tags: CFS, research, funding, Congress, taxes

Be your own Medical Expert

Mike Riley, head of the SacValley CFS/FM Support Group writes:

"If you are going to be a CFS patient, you are going to have to learn some medicine, and you are going to have to be your own advocate. If you wait for the medical system to take you by the hand and solve your condition, you are going to wait for a very long time, and become very frustrated. We are our own doctors. Treat the medical community with respect, but not reverence."

 

Doctors DON’T know it all. There are far too many CFS patients who are permanently disabled – some permanently bedridden – because they blindly followed their doctor’s recommendations to the letter. If you don’t know that exercise is hazardous to CFS patients and your doctor doesn’t know that exercise is hazardous to CFS patients, you might become one of them.

I do know quite a bit about CFS, but even I made the fatal mistake of trusting my doctors to know what they were doing. I assumed (wrongly, it turns out) that if I proved to them that anti-depressants weren’t helping me, that they would eventually prescribe something else. Instead, when I reported the pills didn’t help, I was accused of "not taking the pills because I don’t want to get well and have to return to work". Somehow, it never sank in to him that the thing I wanted most was to get well and return to work; he had the notion that CFS was something that liars and fakers claim to have because there is no way to prove that they are not sick. (Actually, there are tests that can prove it, but he didn’t know what those were, and wouldn’t order the one I specifically asked for.)

Letting them string me along with "if anti-depressant A didn’t work, let’s try anti-depressant B" (and C and D...) for a couple years resulted in an outside rheumatologist telling me that I had deteriorated too far and would never recover enough to return to work; I should’ve looked for another doctor willing to try sleeping pills and pain pills, instead of naively believing that at some point I would succeed in proving that none of the anti-depressants available were of any help, and at that point they would give me what I asked for, what I knew to be the right treatment. Instead of trying something new, they prescribed second rounds of not one, but two, anti-depressants that I’d already tried and found useless! (One of which I had been told to never take again because of the severity of the reaction I had; I could have died from filling that prescription.)

I also made the mistake of trusting that because the law says it is illegal to falsify medical records, that they would keep accurate and honest records. When I finally saw my records, I was horrified. There were false statements on every page. If you believe the doctors’ notes:

*     I was "self-diagnosed", no doctor ever told me I had CFS;

*     I have a long history of depression which I misrepresent as CFS;

*     I quit working the day I got the diagnosis and never worked again;

*     I have no objective symptoms, my only symptom is fatigue;

*     I told him "I don’t want to ever work again" (at a time when I was doing freelance work and had gone into partnership in a friend’s business!);

*     and, the real shocker, a lab report showing there were several EBV tests that came up positive despite the doctor’s note that "all tests are negative" (suspiciously, the page with the positive EBV test results had not been given to me along with the other results when I was reassured that the tests were all negative – coincidence or intentional?)

All of those statements are incontrovertibly false.

One doctor tried to excuse his actions by saying "nothing she said made sense". And it’s true – to someone who wants to diagnose depression, the symptoms of CFS don’t fit the mold. But that doesn’t give him the legal right to make notes based on what he thinks I should have said or what he believes I meant to say or what he wanted me to say. He was obligated to write down what I said, though he could have commented afterward that he questioned the accuracy of it.

There are things that can be done to help CFS. If what your doctor is trying consistently makes you worse, give him an ultimatum: if he doesn’t go to the Web or the library and figure out what those things are by your next appointment, if he doesn’t want to take your advice based on what you’ve read, you will go to another doctor who does know what he’s doing. Because the odds of your being able to function well in the future are increased when you get the right treatment early on, the longer you let doctors string you along with treatments that aren’t working, and promises that "the next one will work" (and the next one and the next one after that), the more likely that you will be permanently impaired.

The odds of improving drop off drastically at Year Five. I was beyond that when Dr. Murphree and I found the right dosage of 5HTP to put me to sleep, and I’m in Year Seven of this relapse now that Dr. Montoya is suggesting treatment with an anti-viral. I may invest thousands of dollars in Montoya’s treatment only to find that it was too late. I’m laying my hope on the fact that there was one year in there that I was on an effective sleeping pill that re-activated my immune system and allowed me to beat back the virus from the level it had reached; maybe that bought me some time, turned back the clock, and I can calculate the current relapse from the day that clinical trial ended, which would put me back into the first five years when treatment seems to be most helpful.

If you’re too sick to stand up to the doctors and demand they give you the correct treatment, bring a healthy friend or family member to the next appointment to stand up to the doctor for you. Or find a lawyer who will write a "bully letter" for $100, to let them know that research has shown anti-depressants are entirely useless against CFS, good results are being had with anti-virals, so the doctor better read up on Montoya’s protocol "or else". (Or have the lawyer demand that you be given some of the immune and neurological tests that would show abnormalities.) To get the lawyer to write that letter for one hour’s fee, you’ll have to provide him with the list of tests or the research summaries instead of asking him to track that information down himself, but they are easily accessible on websites such as Co-Cure.org, ahummingbirdsguide.com, and CFSfacts.org

It’s never easy to stand up to doctors, and especially not when you’re horribly sick, but the life you save could be your own.

Tags: CFS, doctors, malpractice, Chronic Fatigue Syndrome, treatment

How is CFS like politics?

In withdrawing from the presidential race, Tom Vilsack said

"I came up against something for the first time in my life that hard work and effort couldn't overcome."

 That's a feeling that CFS patients know well.  Many of us were hard workers who were accustomed to overcoming any obstacle. 

And now we're faced with something that not only "hard work and effort couldn't overcome", but that hard work and effort make worse.  Some doctors recommended exercising your way back to health and were puzzled when this resulted in the patients becoming bedridden instead of returning to work.  Science has proved why, and experts now warn CFS patients to not exercise. 

 

Tags: CFS, politics, Vilsack

The Issue of Disability

Mark Pellegrino, MD, who is both a doctor and a fibromyalgia patient, shares the following observations:
"It is my experience that the majority of Fibromyalgia workers are motivated and determined to maintain their jobs, but issues of disability may need to be pursued. I think that total disability should be rare in Fibromyalgia, and despite all the problems, there should be something that the individual should be able to do.  However, the economy is not always receptive to a worker with various restrictions due to a medical condition, and all factors have to be considered"


This is a situation that many disabled people face. They very much WANT to work, but no one wants to hire them.

VocRehab experts who have looked at my restrictions and limitations have said that "there are no jobs" that I could do successfully. Even a part-time desk job would require reaching and lifting.  Yet, the judge stubbornly persists in his belief that there must be some charitable employer willing to employ the disabled with whatever accommodations they need.  So, VocRehab says I can't work, but the judge contradicts their expertise with his notion that in an ideal world someone would hire me anyway, and over the objections of the experts deems me "not disabled" without doing anything to help me find that mythical employer he believes wouldn't care about attendance or productivity.

Since this is not an ideal world, employers don't offer charity (except to extremely valuable long-time employees), I started my own business working at home. The business is essentially paperless, so there are no files to lift. The only reaching I do is to set my computer aside when I need to run to the bathroom (something that I could not do as often as I do -- or as easily -- working in an office where time away from desk is noted by a supervisor and the restroom is a hundred yards further away).

I'm fortunate that, unlike some fibromyalgia patients, I don't have permanent "fibro fog". I have some clear-headed hours when I can work, but on MY schedule, not someone else's.  The cognitive/memory/judgment problems are the ones cited most often as reasons CFS patients cannot work. Certainly, if I were required to be downtown at 8:30 AM, they'd affect my ability to work, too.  But since I can sleep till I wake naturally, instead of having an alarm clock go off at 7 AM regardless of whether I only fell asleep at 6:30 AM, it's not as big a problem for me as it was when I was averaging 2 hours sleep because I wasn't falling asleep till after 5 AM.

As an employer who is disabled myself, I am certainly open to hiring other people who are disabled, but that's the nature of MY business; I work at home and my employees would work at their homes.  I've contacted other employers who are disabled, and they are not interested in hiring someone like me -- they want able-bodied employees who can do for them all the things that they can't do for themselves.

The thing that convinced me that I was wasting my time trying to get someone else to hire me was the response of an agency that finds employment for the disabled. I applied for a job in their agency, and even they said "No" and wished me "Good Luck, You'll Need It".  If even agencies dedicated to finding employment for the disabled won't hire the disabled to work with the sort of accommodations I need, there's definitely a problem. 

You can believe all you want in the ideal world where the disabled are given an equal shot at employment, but unless you are willing to advocate to your employer that they hire someone like me, don't tell me "just go get a job". 

It's not that easy.  I tried for years to "just go get ajob" and was turned down at every interview, as soon as it came out that I needed certain accommodations.  I didn't give up on job-hunting until the VocRehab experts testified "there are no jobs" that I could do and explained why I couldn't do any job.  Obviously, if they will testify to that in a Disability hearing where they're being paid to say that I could work if I tried, then they're not going to waste their time to try to place me if I show up on their doorstep.  They know what employers will and won't tolerate, and even they can't imagine anyone hiring me.

It's actually rather laughable that people call me "too lazy to work" when I've done something that most disabled people haven't even tried: I started my own business and put myself to work at a damn good hourly rate, working the number of hours I have doctor's permission to work.  But every time I've tried to work more hours than authorized, I've relapsed, which proves that it's not that I'm "too lazy to work" more hours, but that I'm too sick to work more hours.  I'm able to work 6-10 hours a week because I'm spending absolutely zero time commuting.  If I had to spend an hour a day on the bus getting to/from downtown, I'd be able to work 1-5 hours a week, because all the commute and preparation time has to be subtracted from that 6-10 hours.  If I have to spend half an hour putting on a suit, nylons, and make up and fixing my hair to be acceptable in a conservative law office, that's time that I cannot spend working.  Or I can work at home in my jammies, and put that time toward earning money.

The VocRehab experts are right: there is "no job" out there that I could do successfully because this is not an ideal world.  Employers put their bottom line first, and many of the disabled cannot produce at the required 110%.  Perhaps some day we'll have a society where employers have the Noblesse Oblige mindset to offer employment to the disabled because it's the right thing to do, even if the disabled aren't as productive or reliable as the able-bodied.

But for now, most employers think that providing full employment for the disabled is a great idea ... for the competition.  Not for themselves.  They'll complain about us being a drain on the taxpayers, but won't do a thing to helpus BECOME taxpayers.  Which is what most of us used to be, and most of us would like to become again. 

Tags: CFS, fibromyalgia, employment, disability, ideal world, real world, bottom line, noblesse oblige

Preserve your health -- become an outlaw

The state of California is discussing banning incandescent bulbs.  I think this letter from a fellow patient who is terribly affected by fluorescents says it all:

<<Hello all

My good friend and fellow founder of the north London ME Network, Evelyne
Muller, has as part of her ME extreme sensitivity to fluorescent light (as
well as being unable to use computers for similar reasons).  She spotted an
article in the Guardian newspaper regarding a proposal to ban ordinary
(incandescent) bulbs and force us all to use long-life (fluorescent) bulbs in
the interest of the environment.  She dashed off a letter to the Guardian -
I've pasted it below.  It seems like we may have to get a campaign going on
this issue and we need to collect information about how many people could have
their lives even more limited by a potential ban on ordinary bulbs. If you are
affected by fluorescent lighting, even if only slightly, please let us know by
contacting Evelyne via the following email JanWhitmore@uwclub.net


Julia Cameron

----- Original Message -----
From: Jan Whitmore
To: letters@guardian.co.uk
Sent: 22 February 2007 21:24
Subject: "Should we ban these bulbs?" Article, G2 dated 22.2.07


Dear Editor

The issues raised by the question on your front page (February 22nd) - "If
Australia can ban these, why can't we?" - next to a picture of an incandescent
light bulb, concerns me deeply.  Fluorescent energy-saving bulbs can trigger a
whole array of horrendous symptoms, particularly amongst people with
neurological disorders.

I am equally as concerned to reduce the O2 emissions as those who propose the
ban.  I have been a green and ethical consumer for over twenty years, have had
solar panels on my house for five years and am a long-standing member of
Friends of the Earth.  However, choice in light bulbs is essential because,
just like food and medicines which we ingest, taking in different qualities of
light affects us differently as individuals and can cause damaging side
effects.  My own intolerance to fluorescent lighting developed after a bad
bout of glandular fever twenty-eight years ago, which damaged my inner ear,
caused visual and neurological impairment, and left me weak enough to have to
use a wheelchair for three years.  I was diagnosed with ME.  Too much exposure
to fluorescent lighting has caused me numerous relapses and other people I
have met with ME, MS, epilepsy, migraine, and simply sensitivity, also suffer
varying degrees of unwellness from energy-saving light bulbs.

Your reporter, Les Hickman in G2 (February 22 - "Should we ban these bulbs?"),
seems unaware of these health issues - as I am sure most people are, who are
not affected by them.  There is, however, already some research in the public
domain, even relating fluorescents to conditions mimicing dyslexia in young
children.  Much more research is necessary, particularly to produce
energy-saving bulbs that do not cause these distressing symptoms.

I say to those who want to ban the bulb that I admire your determined stance
to help our ailing planet, but please listen.  If I was sitting under
energy-saving light bulbs now, I could not write this letter.  I would
experience dizziness, visual and mental disorientation, pains in muscles,
swollen joints and increasing weakness from which it can take months and years
to recover.   Last year the first death from ME was recorded by the Coroner
for England and Wales.  This is a serious issue - and I wonder how others are
affected with less robust nervous symptoms, babies, for example.  In our zeal
to help the environment we must not blunt our humanity and go for the  quick
fix, however attractive.  We share life on this beautiful planet and need to
listen and learn from one another.

Education about energy efficiency and  removal of financial barriers are
vital, but a ban by those who cannot appreciate how lighting affects the more
sensitive among us will be inhumane, making some of us prisoners in our
candle-lit houses.

Yours sincerely

Evelyne Muller,
c/o JanWhitmore@uwclub.net   >>

Personally, I have some problems with fluorescents, nowhere near as bad as Evelyne's, but I still wouldn't want to deal with them.  If California bans incandescents, I'll bring them back from Nevada by the case rather than subject myself to the exacerbation of symptoms caused by fluorescents.

Although the manufacturers tell you that they have fixed some of the things people complained about in first-generation CFLs, the people whose health is affected by fluorescents say that they have not fixed the problems that cause the health issues.

Tags: CFS, fluorescent, incandescent, neurological, ME, MS, epilepsy, CFL