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.

Naming the Disease

What's in a name? In this case, a whole lot of pain.

The disease in question has had many names over the years, from the insulting "yuppie flu" to the much more accurately descriptive "chronic mono" or "chronic Epstein-Barr Virus" or "post-viral syndrome."

The term "Myalgic Encephalomyelitis," or M.E., was in widespread use throughout the world until the US agency the CDC decided to promote the spread of disinformation and misunderstanding - and discredit both victims and researchers - with the appallingly misleading name, "chronic fatigue syndrome," or CFS.

Desperate victims dreamed up the acronym CFIDS, for "Chronic Fatigue and Immune Dysfunction Syndrome," to try to add some actual useful description to the CDC's loathsome misnomer, but that term never really caught on among either the general public or medical and health care professionals, who for the most part to this day persist in referring to this devastating disease as "chronic fatigue."

More recently, people suffering from the disease have begun to use a combination of acronyms, such as ME/CFIDS or CFS/ME/FM (for the related illness Fibromyalgia), but I feel this really only makes ourselves feel a little better; nobody else seems to get it. Many other names have also been used, but tragically the "chronic fatigue" misnomer is the one that stuck.

Now Hillary Johnson says:

The real scientists have arrived and they'll be studying XMRV-associated neuro-immune disease, a.k.a., XAND.

The name ["chronic fatigue syndrome"] ginned up [by the CDC] in Atlanta in 1988 to make sure disability insurers would not be required to pay out on disability policies and the public would assume the malady was a new category of mental illness? One can imagine, or simply hope, that the phrase is about to be jettisoned into outer space where one can fantasize it entering the band of space trash circling the earth. For months, the team at WPI has been playing around with names. In lighter moments, their favorite became “I.T.V.S.,” the acronym for, “It’s the Virus, Stupid.”

So should I rename this blog "XAND Watch" or "ITVS Campaign"? Or maybe "XMRV Hunter"? How about just "Antidote for Stupid"?

Let's hope somebody comes up with a more catchy - and compelling - name soon.

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.

Advice for Friends and Physicians; More on de Merlier, Cheney

Do you have a friend or relative who has CFIDS? How should you talk about their illness?

Like almost everyone who has CFIDS, I've been subjected to comments which are, at best, insensitive and thoughtless. Coming from physicians or other health care providers, such comments can be devastating - and can seriously undermine my confidence in that provider's ability to diagnose or treat me effectively. Here's some advice if you know someone who has CFIDS:

Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome

To the above advice I would add this: do not refer to CFIDS as "chronic fatigue." Not ever. Doing so telegraphs that you do not understand the illness and that you do not take it seriously. Use the acronyms CFIDS, ME, or CFS, or say the name: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, or Chronic Fatigue and Immune Dysfunction Syndrome.

Do not insult your friend or your patient by lumping them with people who are "just tired all the time." That's not what this illness is. Not even close. (Read the quote from Lauren Hillenbrand in the heading of this blog and then read the CFS/ME Overviews section of my previous post, An Emerging Understanding.)

De Meirleir

Dr. Kenny de Meirleir's assertion that he has discovered the "True Nature of ME/CFS" has aroused considerable skepticism. Here are some commentaries:

• The Big Breakthrough (!)(?)
• Testing Prof. Kenny de Meirleir's test
• Comments on Hydrogen Sulfide and the Methlyation Cycle in CFS

Cheney

Dr. Paul Cheney's announcements in April 2009 have also inspired some responses, particularly regarding his new position on omega-6 and omega-3 oils:

Dr. Cheney Goes His Own Way - Again

Advocacy

And finally, two articles in the realm of advocacy ask why there is so little being done to find the cause(s) of CFS/ME/CFIDS and effective treatments:

CFS Patient Groups Cowed by the CDC? - John Anderson's scathing indictment on the failure of federal programs to address this illness or to even take it seriously. John points out that CFS advocacy groups have consistently failed to confront the government agencies regarding this neglect.

The Why - Hillary Johnson's powerful and moving speech, given at the Invest in M.E. conference in London earlier this year. This is the speech which inspired John Anderson's comments.

An Emerging Understanding

Recent articles about the illness in question suggest an increasingly coherent and comprehensive understanding of the illness may be emerging.

Note: This illness is variously known as CFIDS, CFS, ME, and Fibromyalgia. The acronyms stand for "Chronic Fatigue and Immune Dysfunction Syndrome," "Chronic Fatigue Syndrome," "Myalgic Encephalomyelitis." I'll use a combination of the acronyms ME and CFIDS.

Diverse paths of investigation appear to be converging on a connection between mitochondrial dysfunction, cardiomyopathy, and immune dysregulation; secondary factors such as leaky gut and central nervous system abnormalities; and possible causative factors such as viral activity and neurotoxins. These connections provide a complex but compelling picture of the workings of this heretofore baffling disease.

In this model, an initial insult (viral, physical trauma, or environmental toxin) causes mitochondrial failure leading to secondary cardiomyopathy, which in turn leads to immune dysregulation which permits ongoing viral activity. This viral activity sustains the mitochondrial dysfunction, creating a stable closed-loop system of persistent illness which is very difficult to disrupt.

At the same time, the low oxygen environment resulting from the cardiomyopathy leads to leaky gut and the overgrowth of organisms in the digestive system which are normally controlled or not present in healthy people. These organisms produce toxins which also degrade mitochondrial function and impede other systems critical to health, thus further reinforcing the closed-loop system.

ME/CFIDS Overviews

Come to bed with ME - A brief introduction to the experience of being ill with ME/CFIDS. See also A Sudden Illness by Lauren Hillenbrand and Olympian Battles CFIDS, an interview with legendary soccer star Michelle Akers.

Evidence that ME/CFS is not a somatisation disorder - ME/CFS advocate Margaret Williams discusses heart failure and post-exertional fatigue and their connection to other CFS symptoms such as cognitive impairment, persistent muscle and joint pain, headaches, and sleep disorders. This article contains a concise summary of Dr. Paul Cheney's cardiomyopathy theory (more on Cheney below) and also a powerful description of the impact on the quality of life of patients with this illness.

From the article:
“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” (Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

"In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with (ME)CFS show markedly higher levels of disability." (Quality of Life and Symptom Severity for Individuals with Chronic Fatigue Syndrome: Findings from a Randomised Clinical Trial. RR Taylor. American Journal of Occupational Therapy 2004:58:35-43)

“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis.” (Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3 November 2006, National Press Club, Washington DC)

Laboratory Marker

Dr. Kenny De Meirleir's "News Heard Round the World" - Dr. De Meirleir announces the discovery of a marker for CFS: high levels of the neurotoxin hydrogen sulfide (H2S) in the urine. He introduces an inexpensive lab test for H2S and connects H2S to many of the symptoms suffered by CFS/ME patients - and to mitochondrial dysfunction.

ME/CFIDS: Mitochondrial Dysfunction, Oxygen Toxicity, and Cardiomyopathy

CFS, The Central Cause: Mitochondrial Failure - Dr. Sarah Myhill describes what she believes is the underlying cause of CFS: cardiac failure secondary to mitochondrial dysfunction. This page includes an excellent discussion of the delayed fatigue phenomenon that I have experienced consistently throughout my illness and explains the causes of many of the other symptoms experienced by people with CFS (including me). Dr. Myhill suggests testing for ATP production and other markers which she believes can provide a definitive diagnostic picture of CFS. She also touches on strategies for recovery.

Dr. Paul Cheney's complex cardiac failure/mitochondrial dysfunction/oxygen toxicity model is based on Dr. Arnold Peckerman's study (see below) and backed by 20 years of research into CFS and treatment of many severely ill CFS patients. In my opinion Dr. Cheney's grasp of the characteristics and progression of the illness is second to none.

Dr. Cheney also makes a connection between mitochondrial dysfunction, immune system dysregulation, and chronic viral activity (see below for more on viral involvement in CFS).

Here are reports on Dr. Cheney's recent lecture in Virginia:

• Paul Cheney Talk, Fairfax VA - Chris (Consuegra?) encapsulates Paul Cheney's three hour lecture in Fairfax, VA, on April 25, 2009. Cheney discusses his theories about oxygen toxicity and diastolic dysfunction as the underlying causes of CFS, and his current treatment plan.
• Judy Roget's Corrections - Judy suggests corrections to some of Chris' comments about Dr. Cheney's lecture.
• Dr. Cheney Goes His Own Way: The Virginia 2009 Lecture - Cort summarizes Chris' comments about the Fairfax Lecture.

Dr. Cheney currently has two new web sites under construction:

• The Cheney Clinic
• Cheney Research

You may also wish to read Cheney's seminal lecture, The Heart of the Matter: CFS & Cardiac Issues, at the CFS & FM Support Group of Dallas-Fort Worth, and keep an eye out for publication of his latest lectures on DVD.

Slow Flow - Dr. Suzanne Vernon says that as many as 70% of people with CFIDS also have POTS (postural orthostatic tachycardia syndrome). Not enough oxygen is getting to our brains. She also cites a study which showed decreased blood volume in people with CFIDS.

Antiviral Treatments

Cardiac Insufficieny Hypothesis - Dr. A. Martin Lerner argues that a subset of ME/CFS exists in which chronic mononucleosis, caused by a virus such as Epstein Barr, cytolomegalovirus, or HHV6, is a factor - and that the virus infection persists in the heart and contributes to cardiac dysfunction. Dr. Lerner holds several US patents related to diagnosis and treatment of CFS/ME. This article contains links to articles related to Paul Cheney's work.

A clinical trial by Dr. Lerner et al showed CFS patients treated with valacyclovir and/or valganciclovir experienced marked improvement. More Lerner articles are here.

Physicians Encouraged by Valcyte - Dr. Jose Montoya's study suggests that CFS can be caused by HHV-6 and/or Epstein Barr virus, and that Valcyte might be an effective treatment for CFS when HHV-6 is involved.

CFIDS/CFS vs. Myalgic Encephalomyelitis

The Hummingbirds' Foundation for M.E. - M.E. activist Jodi Basset makes an emphatic distinction between Myalgic Encephalomyelitis and CFS/CFIDS. She connects M.E. with low blood volume and cardiac insufficiency, CNS and spinal abnormalities, and presents a comprehensive list of tests which can be used to diagnose M.E.

This site contains a massive amount of material relevant to these illnesses. Also, Jodi's personal story is a powerful cautionary tale about the risks involved in taking advice from physicians (and others) who do not understand this illness.

The Nightingale Foundation - Dr. Byron Hyde also makes a distinction between M.E. and CFS and says CFS is not a disease but M.E. is - and asserts that M.E. can be diagnosed by specific tests.

Web Sites

CFIDS Association of America - Information on diagnosis, treatment, research, and advocacy.

Maylgic Encephalomyelitis Society of America - This site's home page makes a powerful distinction between the illness commonly known as Chronic Fatigue Syndrome and the symptom of fatigue.

FightFM - A web site devoted to Fibromyalgia which contains a large body of information relevant to CFS/ME/CFIDS.

Phoenix Rising - News about ME/CFS and Fibromyalgia.

Background Information

Peckerman et al - Study by Dr. Arnold Peckerman and others demonstrating that patients with severe CFS had significantly lower stroke volume and cardiac output than controls and less ill patients. This is the study which on which Dr. Paul Cheney and others have based subsequent research and treatment regimes.

Low Blood Volume and CFIDS - A discussion of the phenomenon of low blood volume which has been observed in CFIDS patients, and the connection with low blood pressure and other symptoms related to CFIDS and Fibromyalgia.

Cortisol Treatment for FM/CFS - A study suggesting cortisol can provide relief of symptoms. I've tried cortisol myself, with dreadful results, so I'm skeptical.