Dear Dr. Hochman:
I read your article in the March 2009 issue of Practical Pain management. I learned a new word.
Iatrogenic.... nice.
I used to be a chronic pain patient this is my story:
1. 1996 Hodgkins IIIB. 16 chemos in 12 weeks, 4 weeks of radiation.
2. Severe neuropathy ensued.
3. Oncologist throws me under a bus labelling me "drug-seeking". All I wanted was
relief. His words: "there is no pathological basis for me to treat your pain".
4. Stanford pain clinic took me in as a legitimate patient - all they needed was a look at my
medical records. I was in - in two days!
5. They titrate me up to 100mcg/hr duragesic q48h. Fantastic pain relief with no issues for 4 years.
6. I wanted to see if my nerves had recovered. Not after 4 years.....
7. They did recover after 6 years. Took six months to titrate down from Duragesic +
occassional Actiq for BT pain.
8. Was almost pain-free when I got off opioids - that was in 2002. Took six months to titrate down.
9 Oncologist retires in 2004. Calls me personally, and tells me [with tears] that he broke his hippocratic oath many times - with me being the most egregious.
10. I forgave him on the spot. Life goes on.
I am highly educated - Masters out of UCLA can design chips [integrated circuits]. I sought medicine [took more than prescribed, but told my doctor why, and sought another prescriber, though I knew it was illegal] - when my pain was not treated by my oncologist. Simple.
I rarely share this story with anyone. You seemed the most appropriate.
Sincrely,
B M
-------------------------------------------------
Your case is an excellent teaching case. What stands out as unusual, however, is your recovery from the neuropathic pain. That is very unusual, in my experience. With your permission I would like to cite your case, without identifying you personally. OK?
Dr. Hochman
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Thursday, October 22, 2009
Monday, October 19, 2009
Does this help you understand what's going on?
Source:
Open Secrets.org
Title: “Washington Lobbying Grew to $3.2 Billion Last Year, Despite Economy”
Authors: Center for Responsive Politics
Student Researchers: Alan Grady and Leora Johnson
Faculty Evaluator: John Kramer, PhD
Sonoma State University
According to a study by The Center for Responsive Politics, special interests paid Washington lobbyists $3.2 billion in 2008—more than any other year on record. This was a 13.7 percent increase from 2007 (which broke the record by 7.7 percent over 2006).
The Center calculates that interest groups spent $17.4 million on lobbying for every day Congress was in session in 2008, or $32,523 per legislator per day. Center director Sheila Krumholz says, “The federal government is handing out billions of dollars by the day, and that translates into job security for lobbyists who can help companies and industries get a piece of the payout.”
Health interests spent more on Federal lobbying than any other economic sector. Their $478.5 million guaranteed the crown for the third year, with the finance, insurance, real estate sector a runner up, spending $453.5 million. The pharmaceutical/health products industry contributed $230.9 million, raising their last eleven-year total to over $1.6 billion. The second-biggest spender among industries in 2008 was electric utilities, which spent $156.7 million on lobbying, followed by insurance, which spent $153.2 million, and oil and gas, which paid lobbyists $133.2 million. Pro-Israel groups, food processing companies, and the oil and gas industry increased their lobbying expenditures the most (as a percentage) between 2007 and 2008.
Finance, insurance and real estate companies have been competing to get a piece of the $700 billion bailout package Congress approved late last year. The companies that reduced lobbying the most are those that declared bankruptcy or were taken over by the federal government and stopped their lobbying operations all together. “Even though some financial, insurance and real estate interests pulled back last year, they still managed to spend more than $450 million as a sector to lobby policymakers. That can buy a lot of influence, and it’s a fraction of what the financial sector is reaping in return through the government’s bailout program,” Krumholz said.
Business and real estate associations and coalitions were among the organizations that ramped up their lobbying expenditures the most last year. The National Association of Realtors increased spending by 25 percent, from $13.9 million to $17.3 million. The American Bankers Association spent $9.1 million in 2008, a 47 percent increase from 2007. Other industry groups that spent more in 2008 include the Private Equity Council, the Mortgage Bankers Association of America and the Financial Services Roundtable.
The US Chamber of Commerce remained the number one spender on lobbying in 2008, spending nearly $92 million—more than $350,000 every weekday, and a 73 percent increase over 2007—to advocate for its members’ interests. Pro-business associations as a whole increased their lobbying 47 percent between 2007 and 2008.
With record spending on lobbying, some industries face serious cut backs and have put the brakes on spending, but have not discontinued the practice. Automotive companies decreased the amount they paid lobbyists by 7.6 percent, from $70.9 million to $65.5 million. This is a big change from prior years; auto manufacturers and dealers increased lobbying spending by 21 percent between 2006 and 2007. Between 2007 and 2008 the Alliance of Automobile Manufacturers, which testified before Congress with Detroit’s Big Three last year, decreased its reported lobbying by 43 percent, from $12.8 million to $7.3 million. Of the Big Three, only one company, Ford, increased its efforts, though not by much: it went from $7.1 million to $7.7 million, an 8 percent increase.
Among Washington lobbing firms, Patton Boggs reported the highest revenues from registered lobbying for the fifth year in a row: 41.9 million dollars, an increase over 2006 of more than 20 percent. The firm’s most lucrative clients included private equity firm Cerberus Capital Management, confection and pet food maker Mars, communication provider Verizon, pharmaceutical manufacturers Bristol-Myers Squibb and Roche, and the American Association for Justice (formerly the Association of Trial Lawyers of America).
Update by Lindsay Renick Mayer
It seems like this should be a classified ad: “Laid off and looking for work? The lobbying industry wants you!” Since we posted this story on OpenSecrets.org in January, the lobbying industry has only continued to grow, even as industries across the board have continued to shrink, forcing hundreds of thousands of Americans out of work. This growth could be attributed in part to the economy itself—many executives are looking for some help from the government to keep their businesses afloat. Others are simply taking advantage of the opportunities that a spate of government handouts has presented. But as long as there’s a federal government calling the shots, lobbyists will be paid more and more each year to hold their clients’ fire to lawmakers’ feet.
Year after year we see increases in lobbying expenditures—in fact, 100 percent over the last decade—and the flurry of activity during the first three months of 2009 indicates that the trend won’t come to an end any time soon. Based on records from the Senate Office of Public Records, the nonpartisan Center for Responsive Politics found that from January through March, lobbying increased slightly compared to the same period of time last year, by at least $2.4 million. Unions, organizations and companies spent at least $799.7 million so far this year on sending influence peddlers to Capitol Hill, compared to $797.2 million during the same time in 2008. That might seem like a small increase compared to the billions spent each year on this activity, but in a time of economic turmoil, that’s a hefty revenue stream for a single industry.
That said, the industries that have made the most headlines for the help they’ve asked for or received from the federal government actually decreased the amount they spent on lobbying in the first three months of 2009 compared to 2008. Recipients of cash from the federal government’s Troubled Asset Relief Program (TARP) handed out less money to lobbyists than they had in any quarter of 2008, in part, perhaps, because they faced new rules restricting their lobbying contact with officials in connection with the bailout program. CRP found that TARP recipients have spent $13.9 million on lobbying so far this year, compared to $20.2 million in January through March of last year and $17.8 million in the last three months of 2008. With the government doling out billions of dollars, these sums pale in comparison to the benefit the companies are reaping.
To read more about how lobbying and influence peddling are shaping legislation, keep up with CRP’s blog at http://www.opensecrets.org/news/.
Open Secrets.org
Title: “Washington Lobbying Grew to $3.2 Billion Last Year, Despite Economy”
Authors: Center for Responsive Politics
Student Researchers: Alan Grady and Leora Johnson
Faculty Evaluator: John Kramer, PhD
Sonoma State University
According to a study by The Center for Responsive Politics, special interests paid Washington lobbyists $3.2 billion in 2008—more than any other year on record. This was a 13.7 percent increase from 2007 (which broke the record by 7.7 percent over 2006).
The Center calculates that interest groups spent $17.4 million on lobbying for every day Congress was in session in 2008, or $32,523 per legislator per day. Center director Sheila Krumholz says, “The federal government is handing out billions of dollars by the day, and that translates into job security for lobbyists who can help companies and industries get a piece of the payout.”
Health interests spent more on Federal lobbying than any other economic sector. Their $478.5 million guaranteed the crown for the third year, with the finance, insurance, real estate sector a runner up, spending $453.5 million. The pharmaceutical/health products industry contributed $230.9 million, raising their last eleven-year total to over $1.6 billion. The second-biggest spender among industries in 2008 was electric utilities, which spent $156.7 million on lobbying, followed by insurance, which spent $153.2 million, and oil and gas, which paid lobbyists $133.2 million. Pro-Israel groups, food processing companies, and the oil and gas industry increased their lobbying expenditures the most (as a percentage) between 2007 and 2008.
Finance, insurance and real estate companies have been competing to get a piece of the $700 billion bailout package Congress approved late last year. The companies that reduced lobbying the most are those that declared bankruptcy or were taken over by the federal government and stopped their lobbying operations all together. “Even though some financial, insurance and real estate interests pulled back last year, they still managed to spend more than $450 million as a sector to lobby policymakers. That can buy a lot of influence, and it’s a fraction of what the financial sector is reaping in return through the government’s bailout program,” Krumholz said.
Business and real estate associations and coalitions were among the organizations that ramped up their lobbying expenditures the most last year. The National Association of Realtors increased spending by 25 percent, from $13.9 million to $17.3 million. The American Bankers Association spent $9.1 million in 2008, a 47 percent increase from 2007. Other industry groups that spent more in 2008 include the Private Equity Council, the Mortgage Bankers Association of America and the Financial Services Roundtable.
The US Chamber of Commerce remained the number one spender on lobbying in 2008, spending nearly $92 million—more than $350,000 every weekday, and a 73 percent increase over 2007—to advocate for its members’ interests. Pro-business associations as a whole increased their lobbying 47 percent between 2007 and 2008.
With record spending on lobbying, some industries face serious cut backs and have put the brakes on spending, but have not discontinued the practice. Automotive companies decreased the amount they paid lobbyists by 7.6 percent, from $70.9 million to $65.5 million. This is a big change from prior years; auto manufacturers and dealers increased lobbying spending by 21 percent between 2006 and 2007. Between 2007 and 2008 the Alliance of Automobile Manufacturers, which testified before Congress with Detroit’s Big Three last year, decreased its reported lobbying by 43 percent, from $12.8 million to $7.3 million. Of the Big Three, only one company, Ford, increased its efforts, though not by much: it went from $7.1 million to $7.7 million, an 8 percent increase.
Among Washington lobbing firms, Patton Boggs reported the highest revenues from registered lobbying for the fifth year in a row: 41.9 million dollars, an increase over 2006 of more than 20 percent. The firm’s most lucrative clients included private equity firm Cerberus Capital Management, confection and pet food maker Mars, communication provider Verizon, pharmaceutical manufacturers Bristol-Myers Squibb and Roche, and the American Association for Justice (formerly the Association of Trial Lawyers of America).
Update by Lindsay Renick Mayer
It seems like this should be a classified ad: “Laid off and looking for work? The lobbying industry wants you!” Since we posted this story on OpenSecrets.org in January, the lobbying industry has only continued to grow, even as industries across the board have continued to shrink, forcing hundreds of thousands of Americans out of work. This growth could be attributed in part to the economy itself—many executives are looking for some help from the government to keep their businesses afloat. Others are simply taking advantage of the opportunities that a spate of government handouts has presented. But as long as there’s a federal government calling the shots, lobbyists will be paid more and more each year to hold their clients’ fire to lawmakers’ feet.
Year after year we see increases in lobbying expenditures—in fact, 100 percent over the last decade—and the flurry of activity during the first three months of 2009 indicates that the trend won’t come to an end any time soon. Based on records from the Senate Office of Public Records, the nonpartisan Center for Responsive Politics found that from January through March, lobbying increased slightly compared to the same period of time last year, by at least $2.4 million. Unions, organizations and companies spent at least $799.7 million so far this year on sending influence peddlers to Capitol Hill, compared to $797.2 million during the same time in 2008. That might seem like a small increase compared to the billions spent each year on this activity, but in a time of economic turmoil, that’s a hefty revenue stream for a single industry.
That said, the industries that have made the most headlines for the help they’ve asked for or received from the federal government actually decreased the amount they spent on lobbying in the first three months of 2009 compared to 2008. Recipients of cash from the federal government’s Troubled Asset Relief Program (TARP) handed out less money to lobbyists than they had in any quarter of 2008, in part, perhaps, because they faced new rules restricting their lobbying contact with officials in connection with the bailout program. CRP found that TARP recipients have spent $13.9 million on lobbying so far this year, compared to $20.2 million in January through March of last year and $17.8 million in the last three months of 2008. With the government doling out billions of dollars, these sums pale in comparison to the benefit the companies are reaping.
To read more about how lobbying and influence peddling are shaping legislation, keep up with CRP’s blog at http://www.opensecrets.org/news/.
Tuesday, October 13, 2009
Advertising
I have elected to allow Google to place advertising on my blog. Why? Because it generates income. If I can get the traffic up significantly we can use the revenue to fund the Foundation and its legal projects, one of which I am about to launch.
So, as far as the ads are concerned, caveat emptor. I have not vetted anything advertised on this blog. So, if you see an ad that promises to cure your fibromyalgia, increase the length of your penis or extend your orgasm, etc., I take no responsibility.
So, as far as the ads are concerned, caveat emptor. I have not vetted anything advertised on this blog. So, if you see an ad that promises to cure your fibromyalgia, increase the length of your penis or extend your orgasm, etc., I take no responsibility.
Saturday, October 10, 2009
Opiophobia – The War Heats Up
After moving back to Houston following 25 years in Santa Fe, from 1998 to 2006 I practiced effective pain management in peace. I succeeded in helping over 2,000 patients regain the quality of their life. In strict conformance with the standard of care that became formalized recently in the Guidelines of the American Pain Society, published in February of this year, my patients improved their functionality, contained their pain and made often remarkable progress in their physical condition and psychological status. They did this all with no complications, adverse effects, overdoses, any symptom of abuse addiction or diversion. They were universally grateful, secure and committed to their contract of treatment.
Sadly, after all those tranquil years, in 2006 I got my first notice from the Texas Medical Board of a review of my pain management cases. From that date to April of 2009, they reviewed 19 cases. In every instance, to their total frustration, they could find no reviewer to fault my pain management. In September of 2009 they subpoenaed another 9 cases. Yesterday, on October 9, 2009, I attended an “Informal Settlement Conference” with two representatives of the Texas Medical Board, to review those cases.
This time they found two anonymous interventionalist anesthesiologists to allege that my prescription of pain medications involved “massive” and “excessive” doses; that I didn’t perform complete physical examinations on each visit and that my telephone follow-up visits used the wrong billing code (I don’t bill for my services as I accept no insurance assignments).
I responded by providing detailed evidence demonstrating that these allegations were completely baseless, and that the opinions of the Board’s “reviewers” were clearly the product of anachronistic opiophobia, and a complete lack of experience with the treatment of intractable pain. I also presented statements from all nine patients involved in this “investigation”, detailing the complete effectiveness of my care in saving their lives, restoring the quality of their life, and describing their complete satisfaction with my care - and the absence of any complications, adverse effects, abuse, diversion, overdose or the induction or worsening of any addictive disorder. They ignored it all, and it appears didn’t even bother to read the patients’ outcome letters. They knew what “outcome” they were looking for.
So sadly, the “Informal Settlement Conference” was a sham. The “settlement” they offered included 20 hours of Continuing Medical Education in Pain Management (their way), quarterly supervision of my cases for five years by a physician of their choice, submission to supervision of my billing by an external authority and a $10,000 administrative fine. They produced this offer (which is much more complicated than this brief summary) just twelve minutes after concluding their “review” and “deliberations”. It obviously had been prepared before the “conference” – it would have taken them more than twelve minutes just to write it.
A month before, in September, they subpoenaed all my prescriptive records from a pharmacy I use often, and the records of 14 more of my cases – all decent, deserving and successful pain patients whose suffering has been conquered simply by adequate titration of their medications to effectiveness – are being “reviewed”. It appears that they have now located “reviewers” who will do their opiophobic bidding (unlike their frustrations in 2006 and 2007).
I don’t think this will end until an end is enforced upon then. I am turning now to the courts, to restore law into pain management in Texas (I helped write the rules for pain treatment in Texas – now the Texas Medical Board will have to be legally compelled to follow them).
As is detailed in my Brief History of Experience with the Texas Medical Board, Texas, once the leader in the nation in enlightened pain care, has regressed to the dark ages under right-wing politics (thanks George Bush and co-conspirators).
In March of 2006 I gave testimony to the Texas legislature about the problems of pain management under this Medical Board.
http://www.txppr.org/newsletter.cfm?NewsletterID=35&CategoryID=0
I re-iterated my opinions before the “Sunset” Commission of the Texas Legislature in November of 2008. Earlier this year – 2009 - I was actively involved in the unsuccessful effort to get important revisions in the Texas Medical Practices Act. (We’ll be back in the next session of the legislature.)
I also have been very outspoken about pain management on my blog http://jfshmd.blogspot.com/, on the web site of the National Foundation for the Treatment of Pain http://www.paincare.org/about/intro_message.php and in the professional literature, and on the LISTserve of “The Project on Pain and Chemical Dependency”. Further, I founded the Pain Practice Liability Association (www.pplaonline.com) - an organization to bring physicians together to defend themselves against Opiophobia, State Medical Boards, the DEA and other persecutors of pain management.
Given all of this, my current issues with the Board cannot be just a coincidence. I know, also, that several insurance companies have filed complaints about my pain care – growing out of the cost to them of pain medication. Other players are also involved, still hidden behind the “anonymity” practices of the Texas Medical Board.
Further, I am by nature a libertarian, constitutionalist and rational thinker. This doesn’t sit well with bigots, racists, religious crack-pots, greedy corporations and their minions. (I have written often that Opiophobia can only be understood through the psychodynamics of racism.)
So, I am harvesting what I have sown. Although I am now an old warrior, I am not ready to retire from battle. New Mexico was just the first skirmish. There is too much to do and so much that can be accomplished.
I believe that Mr. Obama’s election was a turning point in the history of America. The Nobel Prize just given him is a testament to that. The dark forces that have corrupted our national ideals are vicious and desperate. They sense the sands of time sifting out from under them. So they are in a frenzy of last efforts. The Texas Medical Board is a relic of Medievalism, and it too shall pass. I need only to persevere as I try to be a midwife to its delivery into enlightenment.
There is no guarantee that I will succeed. But regardless of the outcome, I will know that I did the right thing. I’m not the kind of person who can sit passively and watch the trains go by to Auschwitz.
JSH
October 10, 2009
Sadly, after all those tranquil years, in 2006 I got my first notice from the Texas Medical Board of a review of my pain management cases. From that date to April of 2009, they reviewed 19 cases. In every instance, to their total frustration, they could find no reviewer to fault my pain management. In September of 2009 they subpoenaed another 9 cases. Yesterday, on October 9, 2009, I attended an “Informal Settlement Conference” with two representatives of the Texas Medical Board, to review those cases.
This time they found two anonymous interventionalist anesthesiologists to allege that my prescription of pain medications involved “massive” and “excessive” doses; that I didn’t perform complete physical examinations on each visit and that my telephone follow-up visits used the wrong billing code (I don’t bill for my services as I accept no insurance assignments).
I responded by providing detailed evidence demonstrating that these allegations were completely baseless, and that the opinions of the Board’s “reviewers” were clearly the product of anachronistic opiophobia, and a complete lack of experience with the treatment of intractable pain. I also presented statements from all nine patients involved in this “investigation”, detailing the complete effectiveness of my care in saving their lives, restoring the quality of their life, and describing their complete satisfaction with my care - and the absence of any complications, adverse effects, abuse, diversion, overdose or the induction or worsening of any addictive disorder. They ignored it all, and it appears didn’t even bother to read the patients’ outcome letters. They knew what “outcome” they were looking for.
So sadly, the “Informal Settlement Conference” was a sham. The “settlement” they offered included 20 hours of Continuing Medical Education in Pain Management (their way), quarterly supervision of my cases for five years by a physician of their choice, submission to supervision of my billing by an external authority and a $10,000 administrative fine. They produced this offer (which is much more complicated than this brief summary) just twelve minutes after concluding their “review” and “deliberations”. It obviously had been prepared before the “conference” – it would have taken them more than twelve minutes just to write it.
A month before, in September, they subpoenaed all my prescriptive records from a pharmacy I use often, and the records of 14 more of my cases – all decent, deserving and successful pain patients whose suffering has been conquered simply by adequate titration of their medications to effectiveness – are being “reviewed”. It appears that they have now located “reviewers” who will do their opiophobic bidding (unlike their frustrations in 2006 and 2007).
I don’t think this will end until an end is enforced upon then. I am turning now to the courts, to restore law into pain management in Texas (I helped write the rules for pain treatment in Texas – now the Texas Medical Board will have to be legally compelled to follow them).
As is detailed in my Brief History of Experience with the Texas Medical Board, Texas, once the leader in the nation in enlightened pain care, has regressed to the dark ages under right-wing politics (thanks George Bush and co-conspirators).
In March of 2006 I gave testimony to the Texas legislature about the problems of pain management under this Medical Board.
http://www.txppr.org/newsletter.cfm?NewsletterID=35&CategoryID=0
I re-iterated my opinions before the “Sunset” Commission of the Texas Legislature in November of 2008. Earlier this year – 2009 - I was actively involved in the unsuccessful effort to get important revisions in the Texas Medical Practices Act. (We’ll be back in the next session of the legislature.)
I also have been very outspoken about pain management on my blog http://jfshmd.blogspot.com/, on the web site of the National Foundation for the Treatment of Pain http://www.paincare.org/about/intro_message.php and in the professional literature, and on the LISTserve of “The Project on Pain and Chemical Dependency”. Further, I founded the Pain Practice Liability Association (www.pplaonline.com) - an organization to bring physicians together to defend themselves against Opiophobia, State Medical Boards, the DEA and other persecutors of pain management.
Given all of this, my current issues with the Board cannot be just a coincidence. I know, also, that several insurance companies have filed complaints about my pain care – growing out of the cost to them of pain medication. Other players are also involved, still hidden behind the “anonymity” practices of the Texas Medical Board.
Further, I am by nature a libertarian, constitutionalist and rational thinker. This doesn’t sit well with bigots, racists, religious crack-pots, greedy corporations and their minions. (I have written often that Opiophobia can only be understood through the psychodynamics of racism.)
So, I am harvesting what I have sown. Although I am now an old warrior, I am not ready to retire from battle. New Mexico was just the first skirmish. There is too much to do and so much that can be accomplished.
I believe that Mr. Obama’s election was a turning point in the history of America. The Nobel Prize just given him is a testament to that. The dark forces that have corrupted our national ideals are vicious and desperate. They sense the sands of time sifting out from under them. So they are in a frenzy of last efforts. The Texas Medical Board is a relic of Medievalism, and it too shall pass. I need only to persevere as I try to be a midwife to its delivery into enlightenment.
There is no guarantee that I will succeed. But regardless of the outcome, I will know that I did the right thing. I’m not the kind of person who can sit passively and watch the trains go by to Auschwitz.
JSH
October 10, 2009
Friday, October 9, 2009
Chronic fatigue - a pattern in medicine?
From today's Wall Street Journal
By AMY DOCKSER MARCUS
Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.
An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, and the Centers for Disease Control and Prevention puts the U.S. figure at between one million and four million. CFS is characterized by debilitating fatigue and chronic pain, but there are no specific treatments, and the diagnosis is often made by ruling out other diseases. Thus there is disagreement in the medical community as to whether CFS is a distinct disease. A study showing a strong viral association with CFS could change that equation.
[Researchers] Michael Hillerby, Whittemore Peterson Institute.
Researchers Judy Mikovits and Vincent Lombardi work in the lab at Whittemore Peterson Institute.
But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS. Researchers are just as concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV. If larger studies confirm these numbers, it could mean that as many as 10 million people in the U.S. and hundreds of millions of people around the world are infected with a virus that is already strongly associated with at least two diseases.
The study was done by researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., the National Cancer Institute and the Cleveland Clinic.
In September, researchers at the University of Utah and Columbia University Medical Center found XMRV in 27% of the prostate-cancer samples they examined. That study also showed that 6% of the benign prostate samples had XMRV. The chronic-fatigue study is the first to find live XMRV virus in humans.
Neither study conclusively shows that XMRV causes chronic-fatigue syndrome or prostate cancer. But the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. "NCI is responding like it did in the early days of HIV," says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.
Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.
So far, XMRV, known fully as xenotropic murine leukemia virus-related virus, doesn't appear to replicate as quickly as HIV does. Scientists also don't know how XMRV is transmitted, but the infection was found in patients' blood samples, raising the possibility that it could be transmitted through blood or bodily fluids.
Dr. Le Grice of the NCI said the highest priority now was to quickly develop a validated blood test or other assay that could be used in doctors' offices to determine who has XMRV. At the workshop, participants also raised the issue of protecting the nation's blood supply. Dr. Le Grice said there isn't enough evidence yet to suggest that people with XMRV shouldn't be blood donors but that determining how XMRV is transmitted was a critical issue. "A large effort is under way to answer all these questions," he said. "I do not want this to be cause for panic."
Although Thursday's scientific paper doesn't demonstrate conclusively that XMRV is a cause of CFS, additional unpublished data make it a very strong possibility. Dr. Mikovits said that using additional tests, the scientists determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control. "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.
At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer. The link between XMRV and lymphoma is still being investigated, but it raised the possibility that XMRV may be associated with other cancers in addition to prostate cancer. NCI's Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.
The Science study was based on blood samples from a national repository at the Whittemore Peterson Institute collected from doctors in cities where outbreaks of chronic-fatigue syndrome occurred during the 1980s and '90s. One of the key questions that the NCI's Dr. Le Grice says must now be answered is whether XMRV shows up in large numbers of CFS patients all over the country.
Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus." Researchers are already starting to test antiretroviral therapies developed for AIDS to see if they are effective against XMRV.
The work on XMRV in chronic-fatigue patients initially was funded by Annette and Harvey Whittemore and the University of Nevada, Reno. The Whittemores set up the institute in 2006 after watching their daughter Andrea suffer from chronic-fatigue syndrome for most of her life. They spent millions of their own money to pay for administrative services, office space, lab equipment and research operations. They were frustrated by the lack of government funding for scientific research into the disease.
At their home in Reno, Andrea Whittemore-Goad, 31 years old, used oxygen before speaking about the devastating toll CFS has taken on her.
Ms. Whittemore-Goad says she was a regular school girl, playing sports and involved in school activities, until the age of 10, when she became ill with a monolike virus that she couldn't shake. She said doctors first told her parents that the illness was psychological, that she had school phobia and was under stress from her parents. "We kept searching for an answer," says Ms. Whittemore-Goad, who says lymph nodes in her groin were so painful that her brothers and sisters used to have to carry her upstairs. She was diagnosed at age 12 with chronic-fatigue syndrome.
Over the years, doctors have treated her symptoms, like intense headaches and severe pain, but the illness persists. She has had her gallbladder, spleen, and appendix removed because they became infected. She tried an experimental drug that she says gave her relief for years, but she then started experiencing side effects and had to stop taking it. Recently the illness has become worse; she began suffering seizures and can no longer drive.
Sitting on the couch next to her husband, whom she married six months ago, Ms. Whittemore-Goad says the news that she is infected with XMRV "made everything that has happened to me make sense." Brian Goad, her husband, said he felt relieved knowing "now we can find a way to treat and hopefully cure it." For both of them, the discovery of the virus is life-changing. There are more than 10 families in the group where family members also tested positive for XMRV. Members of the Whittemore family are now being tested.
Write to Amy Dockser Marcus at amy.marcus@wsj.com
--------------------------------------------------------------
I think I have detected a pattern in my profession. For far too many physicians, when they encounter something they don't know about they tend to:
1. deny its existence
2. blame it on a psychiatric disorder
3. demonize the patient
There is nothing dumber than a really dumb, really smart, person.
JSH
By AMY DOCKSER MARCUS
Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.
An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, and the Centers for Disease Control and Prevention puts the U.S. figure at between one million and four million. CFS is characterized by debilitating fatigue and chronic pain, but there are no specific treatments, and the diagnosis is often made by ruling out other diseases. Thus there is disagreement in the medical community as to whether CFS is a distinct disease. A study showing a strong viral association with CFS could change that equation.
[Researchers] Michael Hillerby, Whittemore Peterson Institute.
Researchers Judy Mikovits and Vincent Lombardi work in the lab at Whittemore Peterson Institute.
But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS. Researchers are just as concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV. If larger studies confirm these numbers, it could mean that as many as 10 million people in the U.S. and hundreds of millions of people around the world are infected with a virus that is already strongly associated with at least two diseases.
The study was done by researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., the National Cancer Institute and the Cleveland Clinic.
In September, researchers at the University of Utah and Columbia University Medical Center found XMRV in 27% of the prostate-cancer samples they examined. That study also showed that 6% of the benign prostate samples had XMRV. The chronic-fatigue study is the first to find live XMRV virus in humans.
Neither study conclusively shows that XMRV causes chronic-fatigue syndrome or prostate cancer. But the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. "NCI is responding like it did in the early days of HIV," says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.
Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.
So far, XMRV, known fully as xenotropic murine leukemia virus-related virus, doesn't appear to replicate as quickly as HIV does. Scientists also don't know how XMRV is transmitted, but the infection was found in patients' blood samples, raising the possibility that it could be transmitted through blood or bodily fluids.
Dr. Le Grice of the NCI said the highest priority now was to quickly develop a validated blood test or other assay that could be used in doctors' offices to determine who has XMRV. At the workshop, participants also raised the issue of protecting the nation's blood supply. Dr. Le Grice said there isn't enough evidence yet to suggest that people with XMRV shouldn't be blood donors but that determining how XMRV is transmitted was a critical issue. "A large effort is under way to answer all these questions," he said. "I do not want this to be cause for panic."
Although Thursday's scientific paper doesn't demonstrate conclusively that XMRV is a cause of CFS, additional unpublished data make it a very strong possibility. Dr. Mikovits said that using additional tests, the scientists determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control. "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.
At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer. The link between XMRV and lymphoma is still being investigated, but it raised the possibility that XMRV may be associated with other cancers in addition to prostate cancer. NCI's Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.
The Science study was based on blood samples from a national repository at the Whittemore Peterson Institute collected from doctors in cities where outbreaks of chronic-fatigue syndrome occurred during the 1980s and '90s. One of the key questions that the NCI's Dr. Le Grice says must now be answered is whether XMRV shows up in large numbers of CFS patients all over the country.
Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus." Researchers are already starting to test antiretroviral therapies developed for AIDS to see if they are effective against XMRV.
The work on XMRV in chronic-fatigue patients initially was funded by Annette and Harvey Whittemore and the University of Nevada, Reno. The Whittemores set up the institute in 2006 after watching their daughter Andrea suffer from chronic-fatigue syndrome for most of her life. They spent millions of their own money to pay for administrative services, office space, lab equipment and research operations. They were frustrated by the lack of government funding for scientific research into the disease.
At their home in Reno, Andrea Whittemore-Goad, 31 years old, used oxygen before speaking about the devastating toll CFS has taken on her.
Ms. Whittemore-Goad says she was a regular school girl, playing sports and involved in school activities, until the age of 10, when she became ill with a monolike virus that she couldn't shake. She said doctors first told her parents that the illness was psychological, that she had school phobia and was under stress from her parents. "We kept searching for an answer," says Ms. Whittemore-Goad, who says lymph nodes in her groin were so painful that her brothers and sisters used to have to carry her upstairs. She was diagnosed at age 12 with chronic-fatigue syndrome.
Over the years, doctors have treated her symptoms, like intense headaches and severe pain, but the illness persists. She has had her gallbladder, spleen, and appendix removed because they became infected. She tried an experimental drug that she says gave her relief for years, but she then started experiencing side effects and had to stop taking it. Recently the illness has become worse; she began suffering seizures and can no longer drive.
Sitting on the couch next to her husband, whom she married six months ago, Ms. Whittemore-Goad says the news that she is infected with XMRV "made everything that has happened to me make sense." Brian Goad, her husband, said he felt relieved knowing "now we can find a way to treat and hopefully cure it." For both of them, the discovery of the virus is life-changing. There are more than 10 families in the group where family members also tested positive for XMRV. Members of the Whittemore family are now being tested.
Write to Amy Dockser Marcus at amy.marcus@wsj.com
--------------------------------------------------------------
I think I have detected a pattern in my profession. For far too many physicians, when they encounter something they don't know about they tend to:
1. deny its existence
2. blame it on a psychiatric disorder
3. demonize the patient
There is nothing dumber than a really dumb, really smart, person.
JSH
Thursday, October 1, 2009
Letter to the Editor of the NY Times
October 1, 2009
To the Editor
NY Times
Re: Swiss Medical System
The essential point which is not considered in this article is the “overhead” cost of medical health insurance. What is the percentage of “overhead” that the Swiss permit their insurance companies to charge? How does this compare to the “overhead” which American Insurers divert from the total expenditures for health care in the United States? Of that approximately 6% difference between the percentage of the GNP spent on health care in the U.S. and in Switzerland, how much of this difference is derived from insurance company “overhead”? One must wonder if the Swiss permit the CEOs of their insurance companies to pay themselves $100,000,000 per year, or to purchase $55,000,000 corporate jets and spend $400,000 for a week end jaunt to Aruba.
Further, granting insurance companies in the U.S. additional power to control the practice of medicine through “prior authorizations”, “reviews of service”, demands for the demonstration of “medical necessity”, “green letters”, etc., would simply be giving an A-47 to the coyotes already “guarding” the hen house. In the U.S. insurance companies could care less about patient well-being and effective/efficient health care. Proof of this is their refusal to pay for preventative and “life-style” prophylactic medical care. As Michael Moore made abundantly clear in “Sicko”, they care only about making money, and restricting health care is how they do it. There is absolutely no regulation and/or competition in the health care insurance industry. So the suggestion that what the U.S. needs is more powerful insurance companies is outrageous. Do your homework before you jump into the dialogue.
J.S. Hochman MD
Executive Director
The National Foundation for the Treatment of Pain
To the Editor
NY Times
Re: Swiss Medical System
The essential point which is not considered in this article is the “overhead” cost of medical health insurance. What is the percentage of “overhead” that the Swiss permit their insurance companies to charge? How does this compare to the “overhead” which American Insurers divert from the total expenditures for health care in the United States? Of that approximately 6% difference between the percentage of the GNP spent on health care in the U.S. and in Switzerland, how much of this difference is derived from insurance company “overhead”? One must wonder if the Swiss permit the CEOs of their insurance companies to pay themselves $100,000,000 per year, or to purchase $55,000,000 corporate jets and spend $400,000 for a week end jaunt to Aruba.
Further, granting insurance companies in the U.S. additional power to control the practice of medicine through “prior authorizations”, “reviews of service”, demands for the demonstration of “medical necessity”, “green letters”, etc., would simply be giving an A-47 to the coyotes already “guarding” the hen house. In the U.S. insurance companies could care less about patient well-being and effective/efficient health care. Proof of this is their refusal to pay for preventative and “life-style” prophylactic medical care. As Michael Moore made abundantly clear in “Sicko”, they care only about making money, and restricting health care is how they do it. There is absolutely no regulation and/or competition in the health care insurance industry. So the suggestion that what the U.S. needs is more powerful insurance companies is outrageous. Do your homework before you jump into the dialogue.
J.S. Hochman MD
Executive Director
The National Foundation for the Treatment of Pain
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