The Human Cost

Millions of people suffer from the ghastly disease known as "Chronic Fatigue Syndrome." Some can still function, with limitations, but for others life has been reduced to a dreary, pain-filled hell unimaginable to those who are not touched by the disease.

One woman has to be taken to the bathroom in a wheelchair. Another, having developed a brutal sensitivity to light, must navigate her home by touch, lights out, windows sealed against the faintest ray from the sun. Yet another spent the best part of a year living on her bathroom floor, unable to crawl back to her bed.

While the government agencies who are supposed to be helping these people continue to dance away from their responsibilities, thousands live with equally devastating horrors. Some are homebound, others bedbound; some are unable to read, others unable to speak; many require round the clock care. Yet these people - isolated, in agony, lives in ruins - still cling to hope.

For the most part, because they are too ill to participate in life in any meaningful way, these people are invisible.

Here are some of their stories.

Horror Statistics from the US Government

Government statistics show an appalling neglect of ME/CFIDS research which is costing the US economy billions. From the CDC and NIH web sites:

• Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: 1.1 million
• Number of new Lyme cases reported in the US between 1990 and 2008: 328,128
• Number of people in the US with CFS: 1+ million (tens of millions more have "similar fatiguing illnesses" but don't meet the CDC's strict "research" criteria)

• NIH money to be spent on HIV/AIDS research in 2010: $3 billion
• NIH money to be spent on Lyme disease research in 2010: $23 million
• NIH money to be spent on CFS research in 2010: $3 million (yes, you read that right. One thousand times less than HIV/AIDS!)

• Number of categories getting more research money than CFS: 209
• Number of categories getting less research money than CFS: 2

And yet...

Dr. Nancy Klimas told the New York Times:

My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. [emphasis added]

I don't mean to pick on HIV/AIDS and Lyme disease. (I was recently diagnosed with Lyme disease myself.) For perspective, here are some other examples of NIH funding categories for 2010:

• hay fever, $6 million
  
• Tourette Syndrome, $9 million
  
• Carcot-Marie-Tooth Disease, $13 million
  
• homelessness, $13 million
  
• methamphetamine, $70 million
  
• Small Pox, $98 million
  
• violence research, $191 million
• influenza, $212 million
• health effects of climate change, $300 million
• nanotechnology, $326 million
• tobacco, $326 million
• depression, $418 million
• obesity, $687 million
• networking and information technology R&D, $950 million
• drug abuse, $1 billion
• substance abuse, $1.8 billion
• health disparities, $2.7 billion
• bioengineering, $2.9 billion
• biotechnology, $5.5 billion
  

What's wrong with this picture?

Maybe the CDC's Dr. William Reeves can clarify things for us. Speaking about the recent discovery of the connection between ME/CFIDS and the XMRV retrovirus, he told the New York Times:

"If I don’t know the nature of the cases and controls, I can’t interpret the findings," Dr. Reeves said. "We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. My expectation is that we will not." [emphasis added]

How's that for scientific objectivity?

Hillary Johnson, author of the book Osler's Web, is very familiar with the CDC's approach to "CFS." Here's a sample of what she thinks of Dr. Reeves' opinions:

Let’s start with Reeves’ comment: "Until the work is independently verified, the report represents a single pilot study."

Blood samples from one-hundred plus patients? Over 200 healthy controls? The phylogenetic tree established? The results confirmed in THREE labs—the Cleveland Clinic, the National Cancer Institute, the WPI? Lab contaminants ruled out using three different tests? That's a pilot study?

About the XMRV researchers and Bill Reeves' "surprise" that such a prestigious journal as Science would publish their study, Hillary adds:

These collaborators didn’t just arrive on the scene last month from Mars; they knew going into this work what the CDC did to Elaine DeFreitas and her retrovirus finding in 1991. They understood the politics. They were aware of the agency’s multi-million dollar propaganda war on a million very sick people. They were prepared. They CDC-proofed this study. The rigor in the Mikovits-Ruscetti-Silverman paper was such that Science had to take the paper.

The privately funded Whittemore Peterson Institute, which led the XMRV study, says this:

Is the government doing enough for ME/CFS?

NO. The Centers for Disease Control (CDC) estimates from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS) and that approximately 80% of chronic fatigue syndrome (ME/CFS) cases in the U.S. are undiagnosed. The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. Overall chronic fatigue syndrome (ME/CFS) is believed to cost the US economy at least $25 billion dollars a year [emphasis added] and perhaps much more. CDC studies indicate that chronic fatigue syndrome (ME/CFS) patients as a group have disability rates similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Despite its prevalence, severity and high economic costs [emphasis added] chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.

Twenty-five billion dollars every year?

So what can we do about the US Government's monstrous and malicious neglect of the millions of people stricken with this disease, and their families - and cavalier disregard for those of us who foot the multi-billion dollar bill for the loss of productivity of the people disabled by this disease and the ineffective medical care available to them?

Wake up, Americans. Even if you don't have ME/CFIDS, even if you don't know anyone who has it, the official policies of the NIH and the CDC - their refusal to support serious efforts to understand and eradicate this disease - is having an impact on you right now. This disease is costing you money!

Comments welcome.

Update: In her blog, Life as we know it, Karen Campbell of CFS Facts has posted a different perspective on some of these numbers in NIH Research Statistics Show Fundamental Inequality. Karen lists a "research dollars per patient" for people suffering from various diseases, including ME/CFIDS. See also her blog "Letter Writing Time!" and this forum post.

Thanks to Hillary Johnson and her blog post about the NIH's nifty new search engine, without which I wouldn't have discovered these horrifying statistics.

Thanks to Peggy Munson and her blog post Fly Away to XAND-ado, or Where Is Elaine DeFreitas? for inspiration and background material for this post.

XMRV retrovirus linked to ME/CFIDS

A new study links the XMRV retrovirus to "CFS." Could this be the cause?

A comprehensive study by a consortium including the Whittemore Peterson Institute, the NIH's National Cancer Institute, and The Lerner Research Institute of the Cleveland Clinic Foundation was announced today. This study demonstrates a strong association between a mouse leukemia virus, XMRV, and "Chronic Fatigue Syndrome," better known as ME/CFIDS.

Since the NIH is involved (through their cancer research arm), a lot of people who normally dismiss the illness as a somatisation disorder (i.e. just another hysterical psychological trip) are taking the findings seriously.

Even CFS arch-villian William Reeves, the enemy of everyone who suffers from this illness, claims he's already got his little elves at the CDC working on replicating the study. Of course, based on past history, more likely they are industriously trying to not replicate it.

Update: Read these commentaries on this landmark announcement:

• Peggy's Blog - Powerful and moving essay by Peggy Munson about ME/XMRV, her personal experiences with the disease, and a broad look at the big picture. A must read if you or someone you care about has been diagnosed with ME, "CFIDS," "Chronic Fatigue Syndrome," Fibromyalgia, or MCS.
  
• Blog: Osler's Web - Hillary Johnson's triumphant declaration of victory over the dark forces in the US government's "health" agencies, the CDC and NIH, whose criminal actions prolonged the suffering of millions of victims of this terrible disease and resulted in countless unnecessary deaths.

News articles about the announcement:

• The Independent: Has Science Found the Cause of ME? - "...the senior author of the study, Judy Mikovits ... said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV... 'With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome.'"
• Dance with Shadows: XMRV Virus Linked to Chronic Fatigue, Says Study - "'Just like you cannot have AIDS without HIV, I believe you won’t be able to find a case of chronic-fatigue syndrome without XMRV,' ... Dr Mikovits said."
• Nature Magazine: Virus Linked to Chronic Fatigue Syndrome - "'I can't wait to be able to tell my patients,' says Mikovits... 'It's going to knock their socks off. They've had such a stigma. People have just assumed they were just complainers who didn't handle stress well.'" Nature Magazine rarely reports on CFIDS, so this study must have really impressed them.
• Reuters: Study Isolates Virus in Chronic Fatigue Sufferers - "'You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away,' Mikovits said in a telephone interview."
• NY Times: Virus Is Found in Many With Chronic Fatigue Syndrome - "'I think this establishes what had always been considered a psychiatric disease as an infectious disease,' said Dr. Mikovits. ... [She] said she and her colleagues were drawing up plans to test antiretroviral drugs — some of the same ones used to treat HIV infection — to see whether they could help patients with chronic fatigue."
• Suite 101.com: New XMRV Study Not the First to Find a Retroviral Link - "The study group of Elaine DeFreitas reported a link between CFS/ME and retroviruses back in 1991." and "Immunovirologist Michael Holmes described retroviral activity in cells of CFS/ME patients as early as 1986." Hillary Johnson documents the CDC's vicious attack on DeFrietas, which eventually forced her to leave the field.
  

Peggy Munson notes: Please ignore the news idiots who use the term "chronic fatigue" instead of ME/CFIDS. Idiopathic chronic fatigue affects some 25 percent of the population and does not resemble ME/CFIDS at all. Hopefully the new research will help the media understand that that is like calling AIDS "chronic weight loss." The preferred term for patients is still ME, or myalgic encephalomyelitis.

Sadly, it's not just the news idiots. I've seen dozens of health care providers - from MD's to naturopaths to acupuncturists to energy healers - in the fifteen years since I was diagnosed with "CFS," and I can't think of a single one that didn't use the term "chronic fatigue" when referring to my disease.

Peggy's Blog has links to many more articles.

Official information:

• Press Release: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome - The official press release in PDF form.
• Research Shows a Potential Retroviral Link Between XMRV and Chronic Fatigue Syndrome - The Cleveland Clinic's official press release.
• Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome - The National Cancer Institute's official announcement includes the electron micrograph of the XMRV retrovirus which is displayed at the top of this post.
  
• Science Magazine: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome - Abstract from the study.
• The Whittemore Peterson Institute - The official site of the research facility that led the study.
• The Cleveland Clinic's Lerner Research Institute - Another research facility which participated in the study.
  

To put this announcement in perspective, please read Hillary Johnson's speech "The Why" and then ponder on how much sooner this discovery might have been made - and the waste of innumerable years and countless lives avoided - had the people at the US Government's official agency responsible for investigating this disease actually done their jobs instead of undermining research and aggressively attempting to discredit the victims of the illness and people who believed them.

You might also want to review the discussion of Dr. Lerner's research into viral treatments of this illness in the July 21 entry of this blog.