Monday, July 26, 2010


Dr. Eric Klein, chair of the Glickman Urological and Kidney Institute at the Cleveland Clinic and co-author of the first study linking prostate cancer to the retrovirus XMRV, recently gave an excellent 17-minute lecture on the retrovirus XMRV entitled, "Is prostate cancer an infectious disease?"  The lecture covered ME/CFS as well.  At about eight minutes into his talk, Klein says: "We think XMRV probably infects everybody, but it persists in those who are deficient in their antiviral defenses."  

I asked Klein about that, and he clarified in an email:  

"What I meant was that anyone, regardless of the structure of their RNaseL gene [which helps fight viruses], can be infected.  Initially we thought only those who have a specific mutation in that gene were susceptible to infection.  I did not mean to imply that the whole population is infected; it is likely that they are not.  Current studies suggest that 3 [percent] to 7 percent of control patients (non-prostate cancer and non-CFS) have evidence of prior infection as determined by the presence of antibodies to XMRV in their blood." 

Klein is the editor-in-chief of Urology and has authored more than 200 journal articles.  He is listed in Best Doctors in America.

Here's the link to Klein's lecture, though there seems to be a glitch in that the audio is sometimes in Spanish--even when you choose English:,11872#

A two-minute segment with Dr. Eric Klein and Dr. Robert Silverman (coauthor of the first study linking XMRV to prostate cancer):

Tuesday, July 20, 2010


Timeline & Bloodline

1934:  The first known cluster outbreak of ME/CFS in the United States occurs in Los Angeles, California.

1936:  An outbreak takes place in a convent in Fond-du-Lac, Wisconsin.

1937-1939:  Several outbreaks are reported in Switzerland.

1948:  An outbreak takes place in Akureyri, Iceland. 

1950-1959:  Outbreaks are recorded in: Adelaide, South Australia; Durban, South Africa; the Royal Free Hospital in London, England; Berlin, West Germany; Punta Gorda and Tallahassee, Florida; Bethesda, Maryland; Seward, Alaska; Louisville, Kentucky, Copenhagen, Denmark; Segwema, Sierra Leone; Gilfach Goch, Wales; Athens, Greece; Patreksfordur and Thorshofn, Iceland. Hospital workers are usually the hardest hit, accounting for approximately 40 percent of cases, with nurses being the subset most afflicted.  Except for the outbreak in the British Army military barracks in Berlin where all the cases are in men, the majority of casualties are women.  Most outbreaks occur in the spring, summer or fall.

1960-1980:  More outbreaks are recorded in the U.S. (California, New York, Lackland Air Force Base and Dallas-Fort Worth, Texas), as well as in Scotland, England, Ireland, and Lebanon.

1970:  In the British Medical Journal, psychiatrists Colin McEvedy and A.W. Beard categorize ME/CFS outbreaks as mass hysteria. Many patients and physicians write letters refuting the authors' hypothesis.
1982-1984:  West Otago, Dunedin and Hamilton, New Zealand, report cluster outbreaks.

1984-1989:  Cluster outbreaks are reported in Incline Village, Nevada; Truckee, Roseville, Placerville and Sonora, California; Lyndonville, New York; Chapel Hill, North Carolina, and other areas in the U.S.  Outbreaks are also recorded in Canada, England and Wales.  Hospital workers and schools are the hardest hit.  Most cases then and now, however, are sporadic.  In Incline Village on beautiful Lake Tahoe, Dr. Paul Cheney and Dr. Dan Peterson dial up the Centers for Disease Control (CDC) for help.  As chronicled by Hillary Johnson in her book Osler's Web, epidemiologists Jon Kaplan and Gary Holmes arrive at the tony resort town, see about 10 ME/CFS patients, then go gambling and skiing.

1986: As reported by Hillary Johnson, Dr. Stephen Straus, then head of CFS research at the NIH, theorizes to fellow physicians about CFS:  "Maybe these are the individuals who... don't want to drive their BMW unless they feel up to it, and they need our help to get behind the wheel."

1987:  California resident Joan Irvine comes down with Chronic Fatigue Syndrome the day after a blood transfusion during surgery to repair a shattered hip and thigh in 1987.  Seeking answers, she writes in 1992 to Dr. William Reeves, who is heading up research into CFS at the CDC, as well as Dr. George Rutherford, then chief of the infectious disease branch of the California Department of Health.  Both men advise her against donating blood.  Their letters and Irvine’s chronology of events can be read here: Irvine’s ME/CFS case is virulent, and she commits suicide in 1996.  Many other patients have reported being diagnosed with ME/CFS after blood transfusions.

1987:  New Zealand family physician J.C. Murdoch writes a letter to The Journal of the Royal Academy of General Practitioners (now known as The British Journal of General Practice) making a case that ME/CFS is not “hysteria” as some other physicians have concluded but is, he believes, a physiological disease with decreased cell-mediated immunity.  He concludes the letter:  “…. the syndrome is an acquired immune deficiency syndrome and we are presently searching for evidence of retrovirus infection in our patients.”  It is the first known mention of the word “retrovirus” to categorize ME/CFS.

1991:  A young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovers evidence of a retrovirus in the blood of ME/CFS patients.  The CDC, however, fails to find DeFreitas’s retrovirus in patients and controls (without using DeFreitas’s protocol).  Tangling with the U.S. government proves costly to the researcher’s career, which scares off likeminded ME/CFS scientists for nearly 20 years.

1994: Dr. Stephen Straus, then head of CFS research at the NIH, launches a CFS workshop with a slide of a Victorian woodcut of a woman recumbent on a couch with her hand clasping her forehead, as chronicled by Hillary Johnson in Osler's Web. 
1996:  In 1996, Primetime Live television correspondent Dr. Nancy Snyderman interviews Dr. Philip Lee, then Assistant Secretary of Health.  The exchange, emphasis added:

NS:  Do you believe in clusters [of CFS]?

PL: Do we have clusters of cases?  Oh yes, I do.

NS: Dr. Reeves [then head of CFS research at the CDC] told the producer for this piece that in fact the Lake Tahoe "cluster"didn't exist and the people living there are hysterical.

PL: Well again, that's his view.

NS: But he's a scientist at the CDC; he's responsible for investigating these kinds of things.

PL: The CDC did investigate that. They reached certain conclusions, which many people disagree with.

NS: Do you believe it's a virus?

PL: I really don't know, I mean….

NS: If you had to take….

PL: Well I would guess….

NS: An academic hunch….

PL: Well I would say it would be a retrovirus or a virus, I would think so. 

NS: Lee says the government is making progress.  But Hillary Johnson, whose book [Osler’s Web, the exploration of the ME/CFS epidemic and the government’s apparent disinterest in dealing with it] is being released today, remains unconvinced:

HJ: I think it's one of the most incredible medical stories of our century and it's going to be very, very hard for the government to change its position on this disease. I mean to have to sort of call up the American public and say, hey, you know that disease that we've been calling chronic fatigue syndrome for the last ten years, well guess what, it's really something far more serious and it's transmissible and we made a mistake in [Lake] Tahoe and we've been making a mistake ever since.

Primetime from Barborka on Vimeo.
1999:  Dr. Kenny de Meirleir of Brussels, Belgium, finds that 4.5 percent of 752 ME/CFS patients develop their disease a few days to a week after a blood transfusion, pointing to a possible transmissible cause in this group of patients. De Meirleir notes that another eight patients became ill two months after transfusion; those cases de Meirleir does not include, as the connection isn’t entirely clear.  De Meirleir advises CFS patients against blood donation.

2006:  A group of American researchers at the Cleveland Clinic discovers a new human retrovirus in men with a virulent form of prostate cancer.  They christen the retrovirus XMRV, which stands for xenotropic murine leukemia virus-related virus.  There are only two other known human retroviruses:  HIV and HTLV.  XMRV is closely related to a mouse retrovirus.  The last retrovirus to jump species was HIV—from monkeys to humans. 

2008:  German researchers fail to find XMRV in prostate-cancer patients.

October 2009:  Led by principal investigator Dr. Judy Mikovits, a group of American researchers from the Whittemore-Peterson Institute, the National Cancer Institute and the Cleveland Clinic publishes a study in October in Science that identifies:
  • The retrovirus XMRV in 67 percent of 101 patients.
  • The study also finds XMRV in 3.7 percent of apparently healthy controls, which would translate to 10 million  Americans.  In contrast, 1 million Americans live with HIV/AIDS.

More sophisticated testing later shows that 98 percent of ME/CFS patients are infected.  It’s not known if the retrovirus discovered by Wistar’s DeFreitas and XMRV are the same retrovirus.  Twenty years ago, it was not possible to sequence the entire retrovirus, as it is today.

October 2009:  Another set of German researchers fails to find XMRV in prostate-cancer patients.

2009:  The U.S. government stops short of blood-donation prohibition for people with ME/CFS, but the National Cancer Institute advises ME/CFS patients against blood donation in 2009 due to concerns about XMRV.  “Given that the virus has been detected in white blood cells, blood-borne transmission is a possibility,” the NCI states.  “More research is needed before guidelines can be established, but it might be prudent for potentially infected individuals to refrain from donating blood.”

December 2009:  The Japanese Red Cross issues a disturbing report that XMRV has been detected in nearly 2 percent of Japan’s blood supply. 

January 2010: British psychiatrist Simon Wessely and two of his colleagues in the psychiatry department at King’s College London, along with retrovirologist Dr. Myra McClure and other virologists at Imperial College London, conduct the first British XMRV study.  Published in January, the study doesn’t find XMRV in any patients.  Wessely’s psychiatry unit supplies the blood samples.  Critics question the patient group for two reasons:  First, the psychiatrist bills CFS as a biosocial disorder, in which a person’s negative “illness beliefs” cause physical symptoms.  And second, his studies often lump CFS in with “chronic fatigue,” “fatigue" and, most recently,  “burnout,” which are entirely different entities.  The British study doesn’t include controls because, explains McClure to CFS Central, “If we had found one positive, we would have had to go for controls.  It was because we didn’t find any that there was no need.”  To which Dr. Judy Mikovits, principal investigator of the Science study, responds:  “That is unscientific and not worthy of comment.”

February 2010: A second British CFS study published in Retrovirology in February doesn’t find any firm evidence of XMRV.  Like the first British study, the second is not a replication of the Science study.

February 2010:  A week after the second British study comes out, researchers at Emory University’s primate lab inject XMRV into macaques and report that even when the virus is undetectable in the blood, it thrives in the reproductive organs as well as the spleen, gut, bladder, lung, liver and lymph nodes.  It’s possible the British studies couldn’t find XMRV in the blood because it’s not where the retrovirus likes to hang out.

February 2010: A February 25 editorial in the British Medical Journal by Drs. Simon Wessely and Myra McClure categorize the research community as “underwhelmed” by the XMRV link to CFS. 

February 2010.  A small Dutch study doesn’t find XMRV in any of its 32 patient blood samples frozen in 1991 and 1992.  Two of the study’s scientists are psychiatric CFS proponents and have co-authored more than 50 papers on the disease, including the 2008 “Guided self-instructions for people with Chronic Fatigue Syndrome,” which combined cognitive therapy with “email contact.”

April 2010:  Dr. Judy Mikovits of the Whittemore Peterson Institute whose October 2009 study found XMRV in CFS patients states that XMRV has probably entered the U.S. blood supply system, but she's unsure whether the retrovirus would be susceptible to the same heat treatments that successfully kill off the HIV virus in blood products.

Spring 2010:  Concerned that the retrovirus may contaminate the blood supply, health officials in Canada, New Zealand and Australia announce new policies in the spring that ban patients with a current or past CFS diagnosis from giving blood. 

June 2010:  German researchers examine respiratory secretions and find XMRV in 2 to 3 percent of 168 healthy controls and 10 percent of 161 immunocompromised patients.

June 2010:  The Food and Drug Administration and the National Institutes of Health conduct an XMRV study that reportedly finds XMRV in 80 percent of patients with ME/CFS—up from the 67 percent found in the October 2009 Science study.  In addition the FDA/NIH study reportedly finds 3 to 7 percent of apparently healthy controls are XMRV positive as well, raising concerns about the safety of the blood supply.  

CFS Central sources say that the paper had been accepted and in galleys at Proceedings of the National Academy of Sciences, when NIH higher-ups alerted to the paper by the CDC suddenly put the paper on hold. The CDC, meanwhile, has conducted its own XMRV study without finding the retrovirus. The Wall Street Journal reports that the papers will be held up until either a consensus can be reached among the three agencies or until it can be determined why one federal agency can’t find the retrovirus when two others can.  The CDC’s study, however, is published the following month, while the FDA/NIH paper is still on hold.

June 2010:  On June 18, the American Association of Blood Banks (AABB) recommends actively discouraging potential donors who’ve been diagnosed by a physician as having CFS from donating blood or blood components.  One million people have CFS in the U.S. and 17 million worldwide.

July 2010:  On July 1, the CDC releases its XMRV study, which doesn’t find the retrovirus in any of its patients or controls.  One of the authors is Dr. William Reeves, who told the New York Times in October 2009 after the Science paper was published:  “We and others are looking at our own specimens and trying to confirm it.  If we validate it, great.  My expectation is that we will not.”  During his two-decade tenure as the chief of CFS research until he was transferred in February, Reeves focused on psychiatric research into CFS, including his 2006 paper on CFS coping styles, which found patients guilty of “maladaptive coping” and “escape-avoiding behavior.”

CFS Central conducts an interview with two CDC scientists about the paper, asking them if they tested the confirmed positive samples Dr. Judy Mikovits and other labs sent to the CDC, and if so what were the results?  The XMRV principal investigator Bill Switzer MPH sidesteps the question with this reply:  “As reported in Retrovirology, this study used and tested samples that were collected in CDC-sponsored studies of CFS, as well a set of healthy blood donors.  Continued efforts are underway to learn more about XMRV, including work with other HHS [Health and Human Services] agencies and non-governmental organizations to standardize testing methods across all XMRV studies.”

Ongoing:  A United States federal consortium is now working to determine the prevalence of XMRV in the blood supply and the reliability of different detection methods.  Currently there are 12 tests used to prevent infectious pathogens from entering the U.S. blood supply, including screens for HIV I and II, hepatitis B and C, syphilis, and the parasitic disease Chagas.  Blood banks have screened for HIV since 1992.  There are 1 million people living with HIV/AIDS in the U.S.  There are 1 million people living with ME/CFS in the U.S.  If the FDA/NIH study numbers hold, up to 7 percent of U.S. residents are positive for XMRV but as of yet have no symptoms.  That translates to 20 million people.  If 20 million Americans are infected with XMRV and don’t know it, and XMRV proves to be the cause or major player in ME/CFS or prostate cancer, how safe, then, is the blood supply? 

This article, “A Commotion in the Blood,” is copyright CFS Central 2010.  All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central.  You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue.  Instead, refer readers to this blog to read the article.

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Wednesday, July 14, 2010


Highly Active Antiretroviral Therapy &
Immune Reconstitution Inflammatory Syndrome

After Science published Dr. Judy Mikovits’s paper linking XMRV to ME/CFS in October 2009, some patients began investigating antiretroviral therapy.  A few have already begun. The FDA/NIH study has also found XMRV in the majority of ME/CFS patients, and when the paper's published, no doubt more patients will be looking into antiretroviral drugs.  No one yet knows, however, whether XMRV is the cause, collateral damage, or even a major player in Chronic Fatigue Syndrome.  That said, several readers have asked for information on antiretroviral treatment; hence this post.

HIV drugs and IRIS
During HAART, which stands for Highly Active Anti-Retroviral Therapy, infectious-disease doctors prescribe a three-drug cocktail (or sometimes more) to treat HIV.  The drugs work synergistically to keep HIV levels low, which keeps the patient healthy and helps prevent the mutations that lead to drug resistance.  AZT, tenofovir and raltegravir are the only three FDA-approved antiretroviral drugs with efficacy against XMRV, in the test tube. 

One of the problems with using antiretrovirals in HIV is a well-known phenomenon called IRIS, which stands for immune reconstitution inflammatory syndrome.  It occurs in some patients soon after beginning drug therapy.  Suddenly, the patients’ viral-load counts plummet and the restored immune system, which had been too immobilized to mount an effective immune defense to any number of viral, bacterial and fungal infections—from herpes viruses to tuberculosis to pneumocystis pneumonia to cryptococcal meningitis—goes into overdrive to beat down those infections. 

Unmasking versus paradoxical
The result can be unbridled inflammation, which is potentially more destructive than the HIV infection itself and can even be deadly.  There are two kinds of IRIS:  unmasking and paradoxical. In the former, the patient has an undocumented infection that becomes apparent when the immune system starts to recover and attempts to take down the invader, leading to inflammation.  Targeted treatment for the particular infection usually resolves the problem. 

In paradoxical IRIS, the symptoms of an infection that’s already resolved reappears, sometimes due to a stubborn infection or drug resistance, but often cultures are sterile, which means there’s no active infection.  Instead the body is railing against the persisting antigen or dead pathogen.  Usually paradoxical IRIS resolves on its own.

IRIS shouldn’t be confused with a Herxheimer reaction, another inflammatory reaction.  In a herx, which occurs early in the treatment for syphilis and Lyme disease, rapidly killing off spirochetes releases toxins and causes inflammation that make the patient ill. 

Predictably, IRIS usually strikes the sickest AIDS patients—those with CD4 (also known as T4 or, colloquially, T-cell) counts below 100.  Normal CD4 counts range from 500 to 1,200; HIV officially morphs into AIDS when CD4 counts dip below 200.

The sickest patients tend not only to have lower CD4-cell counts, they usually have higher HIV levels as well.  The patients with the strongest and most rapid response to HAART are ironically those most likely to experience IRIS.  In HIV, older patients and African Americans are also more at risk.  As with most medical phenomena, genetics play a role. About a third of HIV patients with low CD4 counts experience IRIS.

Viral-load tests
In HIV patients, IRIS usually begins between week one to week 12 of antiviral treatment and continues for a few weeks, and occasionally much longer.  Retroviral load testing is the most reliable way to determine if the patient who feels worse than he did before treatment actually has IRIS.  If the viral load drops precipitously and the patient’s symptoms worsen, it usually indicates IRIS.  If the viral load hasn’t budged or has increased, then most likely it's not IRIS and could mean that the disease itself is progressing.

Unlike HIV, there are no viral-load tests yet for XMRV, so anyone on or contemplating anti-retroviral therapy for XMRV is at a disadvantage here. 

Whether ME/CFS patients on antiretrovirals will experience IRIS isn’t known. While both HIV/AIDS patients and ME/CFS patients have damaged immune systems, they’re damaged in different ways:  ME/CFS patients have more defects in natural killer cells and B cells; HIV patients, in CD4 cells.  In addition, ME/CFS patients tend to have fewer opportunistic infections than AIDS patients.  On the flip side, many ME/CFS patients are exquisitely drug-sensitive and sometimes mount what appears to be an autoimmune response—the body attacking itself. 

The AIDS patients I interviewed about the experimental HIV and ME/CFS drug Ampligen in the "The AIDS Drug No One Can Have" for Philadelphia magazine didn’t get sick from the drug and improved quickly.  But most of the ME/CFS patients—especially those who had been sick for several years—experienced flu-like symptoms for a couple of months and didn’t begin to improve for three to four months.  Ampligen—a toll-like receptor agonist that stimulates the body to churn out infection-fighting chemicals called interferons—is a different class of drug from any HIV antiretroviral drug, so the jury’s out on how ME/CFS patients will respond. 

Dr. Jamie Deckoff-Jones, a physician with ME/CFS who is XMRV positive, is blogging about her journey on a HAART triple cocktail of AZT, tenofovir and raltegravir—the aforementioned FDA-approved drugs with efficacy against XMRV, at least in the test tube. Her daughter, who also suffers from ME/CFS and is XMRV positive, is taking the same meds.  The side effects for them have been relatively mild in the four months since they started, with Deckoff-Jones reporting a mild flare in her neurological symptoms for the first couple of weeks on each drug.  Her daughter has had an easier time of it.  Both report more functionality and a lessening of their ME/CFS symptoms.

Preventing IRIS
One way to minimize the potential for IRIS in HIV is to pre-treat patients for any known concomitant infections before beginning antiretrovirals. University of California at San Francisco biochemist Dr. Joe DeRisi developed the revolutionary ViroChip, which tests for all known animal and human viruses.  The average ME/CFS patient registers a whopping 30 to 50 or more actively replicating viruses on the chip, including several herpes viruses, so pretreatment would be a tall order.  (The average healthy person, in contrast, has about three or four actively replicating viruses.)  One option for treating patients for paradoxical IRIS is to treat simultaneously with medications that reduce inflammation.  Among them:

Steroids.  Proven effective for treating tuberculosis-associated, pneumonia-associated and herpes zoster (shingles)-associated IRIS, among other infections, the steroid Prednisone is the most prescribed medication to treat IRIS. 

Leukotriene receptor antagonists.  Perhaps the most promising and well-tolerated new treatment for IRIS is the heavily advertised asthma drug Singulair (montelukast). Leukotrienes are fatty molecules that contribute to asthma, hay fever and other allergic symptoms.  One group of British researchers found that three patients with severe IRIS who didn’t respond to steroids responded rapidly and dramatically to Singulair.  The medication blocks leukotrienes D4, LTC4 and LTE4.  

Another leukotriene receptor antagonist and asthma medication is Accolate (zafirlukast), which blocks cysteiny leukotrienes, but whether the drug is effective for patients suffering from IRIS isn’t known.  A third asthma med, Zyflo (zileuton), stops leukotriene synthesis by inhibiting an enzyme called 5-lipoxygenase.  Again, it’s not known if Zyflo prevents or treats IRIS.

Ibuprofen treats pericarditis (inflammation of the heart) caused by IRIS.  However, patients on certain antiretroviral drugs, including tenofovir and AZT, should not use ibuprofen and other NSAIDS regularly, as the pain-reliever can compound the kidney toxicity of the two antiretrovirals.

Hydroxychloroquine (Plaquinel), an old-line malaria drug, has been reported anecdotally to reduce IRIS-associated inflammation. 

Thalidomide (Thalomid) has anecdotally been reported to treat IRIS.  Pregnant women should not take the drug, as it is a well-known teratogen and causes limb deformities.


This post should not be construed as medical advice.  Nor is this post an endorsement of the use of antiretrovirals for ME/CFS patients and an XMRV diagnosis.  I am a science writer, not a physician or a researcher.  Consult your health-care professional before beginning any treatment plan.

That said, getting information on treatment protocolsthe good and the bad, the risk to reward ratiois essential on blogs such as these, since there has been so little viral research into ME/CFS until the past year.  Many patients have been ill for decades, some have died waiting for an effective treatment, and most are hungry for answers and help.  One patient organization keeps tabs on patients’ deaths.

For those who have stumbled upon this blog and aren’t familiar with Chronic Fatigue Syndrome, it does, thanks to its unfortunate name, sound like a trivial disease unworthy of big-gun medications.  But in reality, as more than two thousand studies have documented, ME/CFS is a neuroimmune disease that causes, among other problems: seizures, fevers, vertigo, swollen lymph nodes, immune abnormalities, cancers (particularly lymphomas), autonomic dysfunction, cardiac abnormalities, short-term memory loss, abnormal brain scans, and death.  In short, it’s not a disease about being tired.  Dr. Mark Loveless, a longtime ME/CFS and HIV physician testified before Congress in 1995 that a “Chronic Fatigue Syndrome patient feels effectively the same every day as an AIDS patient feels two months before death.”

Those who feel the need to bully, frighten or lecture those who post questions or comments about antiretrovirals—or any other treatment—consider getting professional help instead.  CFS Central will be a safe forum to exchange information. 

Patients who want to share their own experiences with antiretroviral medications can post on this blog or contact me directly at Mindy Kitei CFS Central, as I’ll be writing more articles on the subject.  I know readers are also interested in posts from patients on antiretrovirals who’ve experienced IRIS—and those who haven’t. 

I’d also like to hear from patients who’ve developed ME/CFS within weeks after a blood transfusion, as I’m going to post on this as well.

This article, “HAART and IRIS” is copyright CFS Central 2010.  All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central.  You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue.  Instead, refer readers to this blog to read the article.

Monday, July 12, 2010


Dr. Randy Schekman, editor-in-chief of the Proceedings of the National Academy of Sciences (PNAS), where the FDA/NIH XMRV ME/CFS paper had been accepted, gave CFS Central an update.  The NIH's Dr. Harvey Alter, one of the authors of the study, told Schekman that he'll be returning the paper to the journal "within weeks."  After that, the PNAS editorial board will consider the paper, which, Schekman says, is "standard procedure."  The FDA/NIH study found the retrovirus XMRV in the majority of ME/CFS patients that it tested.

Friday, July 9, 2010


The Old Guard versus the Crackbrained 
and big news at the end of this post

“When a true genius appears in this world, you may know him by this sign, that the dunces are all in confederacy against him,” wrote Jonathan Swift in 1706.  With that one sentence, Swift deliciously summed up the abuse the gifted suffer at the hands of the ordinary and provided the prophetic title for John Kennedy Toole’s 1980 best-selling novel, A Confederacy of Dunces.  

That manuscript’s first editor wanted the book reworked to make it more marketable, but after much dickering Toole refused, sank into a warren of depression and paranoia, and committed suicide.  Toole’s tormented mother spent a decade fielding rejection notices from publishers before the book was finally published—and won the Pulitzer Prize.

When 17th century British physician William Harvey argued that the heart was not a spiritual entity but rather just a pump that circulated blood, he was dismissed as “crackbrained.”  Harvey’s theory flew in the face of the 1,400-year-old widely held “fact” that blood originated in the liver, snaked through the heart and drained into the tissues.

Change may be inevitable, but it isn’t measured or fair.  It’s bitter and bloody with the old guard on tenterhooks, fighting to the death to stave off its own obsolescence.  “Unrewarded
genius is almost a proverb,” remarked Calvin Coolidge in 1914.  “Yes,” bemoaned playwright Oscar Wilde, “the public is wonderfully tolerant.  It forgives everything except genius.”

Cowardly acts
Institutions—entrenched in the status quo, jealous guardians of their turf—stomp out creativity and color inside the lines.  The result is that throughout history many brilliant, defiant minds have lived haunted lives of ridicule and disaster, while their sheep-like counterparts prosper.  The abuse the gifted suffer from those who are not is, like all cowardly acts, based on fear.

That is why French chemist Louis Pasteur, who had already created in 1885 the first therapeutic vaccine (for rabies) and who would go on to invent pasteurization and prove that microbes caused infectious disease and fermentation, was nonetheless denied admittance to the prestigious Academy of Sciences, in Paris.  According to biographer Patrice Debré, Pasteur wrote a prophetic letter to his wife about it:  “Everyone knows that I am the valid candidate…. But they are afraid (at least many of them are) of chemistry.  They are saying that chemistry wants to take over everything.”  Pasteur was not surprised when the Academy rejected him.

Pasteur’s germ theory built on the work of Hungarian obstetrician Ignaz Semmelweis, who was ridiculed for his seemingly modest request that in the interim between doing autopsies and delivering babies, physicians wash their hands.  Semmelweis reasoned deductively that the high postpartum mortality rate among new mothers following delivery by male physicians, as opposed to the low mortality rate by female midwives, was due to infection from a “poisoned” cadaverous substance, inadvertently passed on by physicians who went directly from autopsy room to delivery room. 

The midwives, however, didn’t conduct autopsies, so their hands were, relatively speaking, clean. Now known as sepsis, in Semmelweis’s time the infection was called childbed or puerperal fever.  But Semmelweis’s theory was dismissed, and his distress over thousands of women needlessly dying landed him in a mental institution, where he spent the remainder of his life.

Now even kindergartners know to wash their hands when they’re dirty.

Emergence versus acceptance
The late physicist and science historian Thomas Kuhn, who authored the groundbreaking book The Structure of Scientific Revolutions in 1962, believed the lag between the emergence and acceptance of new ideas is natural and inevitable.  Change, he postulated, can come about only after long periods of stasis because “frameworks must be lived with and explored before they can be broken.” 

Compounding the inertia, and contrary to popular belief, Kuhn held that most scientists are not objective and independent thinkers.  Rather they are conservatives who do their best to implement exactly what they've been taught.  While Kuhn addressed the scientific process, this rigidity is characteristic of all disciplines and is longstanding.  “Inventions have long since reached their limit, and I see no hope for further development,” claimed a blasé Julius Sextus Fontinus, a Roman engineer, in the first century after Christ. 

Nearly two thousand years later, in 1943, an equally blinkered Thomas Watson, then chairman of IBM, declared:  “I think there’s a world market for maybe five computers."
Abram Hoffer and Linus Pauling
In the 1950s, the great Canadian psychiatrist Abram Hoffer, an early proponent of vitamin therapy, and two of his colleagues discovered that high-dose niacin lowered bad cholesterol and raised good cholesterol. Later, Hoffer joined Nobel laureate Dr. Linus Pauling to test out Pauling’s theory that Vitamin C was an effective adjunct therapy for cancer patients.  The duo found that the vitamin prolonged the length and the quality of life, and in some cases, particularly in lung cancer, effected long remissions. 

In response to both findings, the medical establishment vilified them.  The bruised Pauling was offended that no one would listen.  But the circumspect Hoffer reasoned that it can take two generations—forty years—for new ideas to be accepted.  With all the speed of a glacier melting (in pre-global-warming time), scientific derision morphed into doubt and, finally, acceptance of niacin as a cholesterol remedy.  While vitamin C hasn’t exactly been embraced as a cancer treatment, in the past few years researchers at the NIH and elsewhere have found it to be effective.  
Paul Cheney and Daniel Peterson
In 1984, Dr. Paul Cheney and Dr. Daniel Peterson contacted the CDC about an outbreak of a debilitating illness afflicting the residents of Incline Village, Nevada. As chronicled by Hillary Johnson in her book Osler's Web, epidemiologists Jon Kaplan and Gary Holmes arrived at the tony resort town, saw about 10 ME/CFS patients, then went gambling and skiing.  Twenty-six years later, not much has changed as far as the government response to ME/CFS is concerned.  As a result, many physicians, researchers and citizens still don't understand that it's a grave and sometimes fatal neuroimmune illness. Some continue to debate its existence, as if the disease were a matter of theology, not science. 

Was Abram Hoffer right?  Will it take another 14 years before the government stops shrinking back and dismissing the collection of scientific data, if by their denial they could make fact fiction and alter the grim misadventure this disease has become?  Or, perhaps the fed-up patients will push through and the FDA/NIH XMRV Chronic Fatigue Syndrome study will be published intact in the Proceedings of the National Academy of Sciences, and, like the flip of a switch, the energy changes.
Apparently, at least for today, it's the latter.  The news from the CFIDS Association this morning:  "The [FDA/NIH] researchers have conducted additional experiments as requested by the reviewers, and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.Sources to CFS Central say that the researchers' conclusions have not changed.  PNAS Editor Dr. Randy Schekman is on vacation and could not be reached for comment.

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