What the Heck are They Talking About: Neurological CFS: Funding: What do CFS/ME and fibromyalgia have in common with psoriasis?

"Concentrate on what cannot lie. The evidence..." -- Gil Grissom

Wow, I just read that the 2005 budget for the National Health Institute is to be doubled this year. Hazzzzaaaaaaaaaaaa! Partayyyyyy Tahhhmmm! Break out the cheese whiz, ewww green stuff, well hey, we’ll call it blue cheese and no one will know the difference…

What’s that you say? We can’t party yet? What kind of BS is this? But, I looove a party. Pardon moi, could you please move? You are in the way of my preparations…

Let’s see, I’ll splurge and include a six-pack of Corona if someone else can afford the limes…

What? What do you mean this is only a two percent increase for NIH and that CDC funding may be cut for a second year in a row. Oh dear me.

Yeah, but, hey an increase is an increase. Thank goodness I have the party shuffle on my iTunes fully loaded, now where are those speakers? I swear I would lose my head if it weren’t screwed on. Maybe I should clear the floor for dancing. Oh yeah, forgot, dancing is a delicious memory from the past. Sigh. But, hey we can always do chair dancing for a minute or so.

We interrupt this silliness with funding reality

The National Institutes of Health (NIH) is the nation's medical research agency according to director Elias A. Zerhouni,

Mr. Zerhouni, also states that as a leader of medical research, NIH aims to make discoveries that will help prevent, detect and treat disease and disability.

What does this mean for an estimated 800,000 plus Americans with Chronic Fatigue Syndrome (CFS/ME), as well as an estimated three to six million people with fibromyalgia, both disabling diseases?

Not much. Spit in the ocean give or take a dollar.

According to the CDC, the annual loss in productivity in the US is $9 billion and the average annual loss in family income due to CFS is $20,000. Patients are often as severely or more disabled than those with heart failure or COPD yet only a mere $131 million has been spent on “research” funding over the past 13 years. This figure includes not only the NIH budget, but the Centers for Disease Control and Prevention (CDC) budget as well.

And there are no good times ahead.

2006

The newly released Bush Administration’s 2006 budget contains a $28.8 billion budget request for the National Institutes of Health (NIH) in fiscal year (FY) 2006, a virtually flat 0.7% increase of $196 million over the current year's funding and far below the projected biomedical inflation rate of 3.5%.

If enacted, it would be the first time since 1964 that NIH received an annual increase of less than 1%. And most NIH institutes and centers wlll receive increases of less than 1%.

As Eric Umansky of MSN Slate also notes, “And that good-for-nuthin' bureaucracy known as the Centers for Disease Control and Prevention would be trimmed by about 12 percent.”

This represents a $555 million reduction in funding for Centers for Disease Control and Prevention (CDC).

Back to 2005

Crowded into the lowest funding tier of 110 NIH funded diseases, $6 million in research funds is earmarked for CFS/ME and fibromyalgia comes in at with an estimated budget of $10 million. Read on to find out why it will be even less than that.

CFS/ME and fibromyalgia research funds are also flat-lined along with ten other disease research areas that will also receive no additional funding for 2005.

Of the twelve, only three disorders receive less funding than CFS/ME and only psoriasis, a genetic immune-mediated chronic illness, affects as many people as CFS and fibromyalgia. Also noted is that ten of the 12 flat-lined research areas affect primarily infants and females.

In contrast, other brain disorders will receive $5023 million, other autoimmune disorders $616 million, and $398 million for other forms of arthritis.

Unfortunately, until the United States government adopts the ICD 10 G93.3 classification, correctly categorizing CFS/ME as a brain disorder, we get no
slice of those pies.

Solid biomedical research also shows that there is a autoimmune component to these biological disorders, but, we're not getting any of that pie either. And
without adequate biomedical funding autoimmune connections cannot be researched further without funds. It's called a Catch -22. That's politics people.

Wait, it gets worse. We’re double booked and bloated.

The fine print: Note that this table includes estimates for research in many diseases/conditions/research areas which are also included under other disease/conditions/research areas, because the research contributes to multiple fields of research. The table is therefore not additive.

Translation: CDC studies overlap with NIH studies so the aggregate is less spending not more.

The NIH’s demonstrated proclivity for unethical activity continues to impact CFS/ME. The most recent problem stems from 12 misclassified studies unconnected to CFS/ME siphoning off $542 million. Which amounts to 22 percent of funding in the five years including 2003.

During that five year time frame, less than 15% of studies were for treatment - a grand total of nine with only three studies of CFS in adolescents – out of 76 studies funded. Nearly $8.3 million or 26.3 percent was for the Cooperative Research Centers program, which was discontinued by The National Institute of Allergy and Infectious Diseases (NIAID) in 2002.

Does this mean we get a refund?

It should be noted that the 2006 National Institute of Allergy and Infectious Diseases (NIAID), which funds most of NIH's bioterrorism-related research, is once again the agency's biggest gainer at $4.5 billion, a 1.8% increase of $57 million.

And we wonder why biomedical researchers are passing the hat among patients to obtain funding?

As always, if I have misstated any facts please let me know. I kind of had to use both my fingers and toes on this one. Gotta love that adult-onset acalculia.

Sources:

Additional commentary of the impact on health care, including Medicaid can be found at Slate.

T. Agres, "US Congress passes FY05 budgets," The Scientist, November 24, 2004.

"Budgeting for Health," The Scientist, 43 March 29, 2004.

"NIH Conflict of Interest Information and Resources" (http://www.nih.gov/about/ethics_COI.htm) "Federal Register" (http://www.archives.gov/federal_register/index.html)

"Analysis of NIH-Funded Research on Chronic Fatigue Syndrome Shows a Trend of Decreased Support: Fiscal Years 1999-2003."

NIH Estimates of Funding for Various Diseases, Conditions, Research Areas: Updated January 18, 2005

What the Heck are They Talking About: Neurological CFS

Funding: What do CFS/ME and fibromyalgia have in common with psoriasis?

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