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There was good medical news yesterday.

Let's take a walk through ME/CFS, XMRV and MS, CCSVI...


In 1995, Paolo Zamboni, an Italian surgeon, did not accept common medical answers when his wife was diagnosed with multiple sclerosis. He reviewed the literature instead of relying on current rote guidelines and found promising, yet abandoned theories. One involved iron accumulation in the central nervous system. Zamboni, who specializes in vascular problems, realized that obstruction of blood flow away from the brain could be causing the iron issue. After radiological imaging showed obstruction in his wife’s jugular vein he performed balloon angioplasty—a simple, well-understood procedure— with remarkable results. Her MS symptoms rapidly resolved and did not return.

The promise for MS sufferers did not go unnoticed. Chronic cerebrospinal venous insufficiency (CCSVI) appears to be an important, sometimes primary, cause of MS symptoms. Clinics providing surgical correction to CCSVI are being opened in medical tourism sites worldwide.


In October, 2009, researchers published a paper demonstrating a correlation between xenotropic murine leukemia virus-related virus (XMRV) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). They found 67% of ME/CFS suffers were positive for XMRV and only 4% of healthy subjects were positive.


Government agencies, particularly the Centers for Disease Control, would be expected greet news like these reports with their full support and resources. But something much different happens—almost invariably.


Current estimates of the number Americans with MS are about 400,000. Estimates of U.S. prevalence of ME/CFS are about four million. Both of these diseases can rapidly become disabling and persist for years or decades. Any plausible suggestion of a pathway to cure or remission should obviously be investigated to its fullest by our best and most insightful researchers. But this rarely happens. Usually, government/academic/corporate machinery kicks into gear to smother the most innovative, perceptive research.


We can guess at reasons why, but in a secretive and manipulative system it gets hard to determine true causes.


It could be as simple as an agency, medical specialty, or corporation unwilling to admit they have been embarrassingly wrong for a long time. It could be the unwillingness of the medical doctor culture to deviate from their medical textbooks or professional group guidelines.


More cynically, it could be that medical resistance to new ideas comes from entrenched investment by drug companies, medical device manufacturers, and medical specialities profiting substantially from the status quo.


Health insurers could be the real cause of the problem. They like predictability. They would rather have a disease classified as incurable with predictable costs than have it be curable with unpredictable costs. This is particularly true if the innovation has a one-time, fairly substantial cost that does not entirely guarantee immediate payback in reduced insurance company payouts. Insurers only want to pay for things they build into the premiums they charged the previous three years.


As Ludwig Fleck explained in Genesis and Development of a Scientific Fact the medical profession is filled with uncertainties. When doctors encounter a new medical phenomenon there is a period of chaos where all sorts of explanations and recommendations are suggested. Then, at some point, a version of the phenomena is included in a vade mecum (handbook) that becomes the reality doctors use. (Yes, this is similar to points raised in Thomas Kuhn’s The Structure of a Scientific Revolutions. Kuhn acknowledged reading Fleck, but did not feel significantly influenced by his writings.)


Regardless of motivation, there is a pattern of behavior among our government backed researchers that is not good.


We see it in recent government-academic-corporate handling of CCSVI.


Zamboni published his first paper on CCSVI and MS in April,2009 (web availability December, 2008). Without the efforts of patient advocates, the news might have gone unnoticed. In February, 2010 Canadian news media picked up the story and in June, 2010 The New York Times published a fairly balanced article.


From the article:

“In my view the evidence is quite scanty and the biological plausibility is low,” said Dr. Stephen L. Hauser, the chairman of neurology at the University of California, San Francisco. Many neurologists agree. Dr. Hauser said there was much stronger evidence that the disease arose from genetic variations affecting the immune system.


Neurology specialists want to own MS. They prescribe expensive, injectable drugs that generally make patients feel worse and only produce improved symptoms about a third of the time. Science has little to do with this. Their popular theory of genetic differences in the immune system causing MS, were recently refuted in an extremely rigorous study in identical twins. There was no indication of genetic causation, nor has there ever been, but that does not change neurologists’ minds.


In a National Post article, in January, 2010, Dr. Mark Freedman states “I think there are going to be millions of dollars spent now to follow a hoax…. If I thought for one instant there was substance to this, I’d be all over it,”. Freedman is head of U. of Ottawa’s MS program.


Dr. Zamboni has always presented his observations with the great caution, saying only that we need to find out more. The vitriol directed at him is unwarranted, almost spectacular, and, depending on the career strategy of the journalist, either reported reasonably, or as vitriol confirmation.


With CCSVI, U.S. government agencies have yet to join the discussion. The CDC is, at its heart, primarily an infectious disease agency and does not look that closely at therapies not involving acute infections. The CDC has historically discounted infection as a possible cause of MS. 


But what about CDC response to a new possible cause and treatment for ME/CFS? The CDC has been actively trying to suppress evidence of infectious causes of ME/CFS since the mid-1980s. In October, 2009, Dr. Judy Mikovits reported in Science that her research group found evidence of XMRV in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) in healthy controls. The CDC immediately began research to show Mikovits wrong and show themselves right, advancing their advocacy of CFS as a psychological condition, just as they had for the last 25 years. And, the CDC’s study saw nothing, absolutely nothing. Their study tested 51 persons with CFS and 56 healthy persons. All had completely negative tests. 


But outside the CDC, researchers just weren’t with the CDC’s program of XMRV suppression. A National Institutes of Health/Food and Drug Administration (NIH/FDA) study showed a significant correlation between ME/CFS and the XMRV retrovirus.


Both papers were approved for publication, but once word got out there was a disagreement, both sides agreed to put their papers on hold. Right here, we have a problem. If researchers were doing real science, data should be a data and any observations, if legitimate, should published as soon as possible.


Despite the detente agreement, the CDC paper, denying a correlation between XMRV and ME/CFS was published July 1, 2010. The NIH/FDA paper confirming the correlation was put on hold. 


But this week there is news. On August 24, 2010, the NIH/FDA paper was released. Not only does it give remarkably good evidence for a correlation between XMRV-like viruses and ME/CFS, but it explains how the XMRV denialists might have produced their negative results.


Clinical medical research has become something much different from real scientific research motivated by desire to understand our world. It is mostly a propaganda tool using the whitewash of prestigious universities, institutes and agencies to give it credibility.


Marcia Angell resigned as editor of the New England Journal of Medicine in June, 2000. In 2009, in The New York Review of Books she says:

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

 


Sharon Begley recently wrote in Newsweek of how little useful comes from NIH sponsored medical research despite the $31B a year it costs taxpayers. This is a really bad thing. But what is worse is the sizable portion spent to stifle possible innovations that could help disabled and dying citizens. As with virtually everything political in the U.S. these days, everyday citizens end up financing corporate malfeasance. We pay for it in insurance premiums, drug prices, and taxes.


Maybe we don’t need to speculate on why this is going on. Maybe we just need to stop doing it. We can sort through which senators and reps support this medical cartel and get them to change or get them out of office. XMRV and CCSVI are just recent examples coming to light. How many other medical problems are waiting for unbiased research and solutions?

Originally posted to Joel Spinhirne on Wed Aug 25, 2010 at 12:09 AM PDT.

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Comment Preferences

  •  Interesting. (8+ / 0-)

    I went to Wiki to learn more.  I was surprised to learn that on June 18, 2010, the American Association of Blood Banks recommended actively discouraging potential donors who have been diagnosed as having CFS by a physician from donating blood or blood components.

    It also appears that Canada, New Zealand and Australia have similar policies in place.

  •  As a scientist that follow MS research... (12+ / 0-)

    and a person who's father died from MS, I welcome a complete study by Dr. Zamboni.

    To date, his data is limited and he does not have definitive proof that angioplasty is an effective treatment for MS.

    I hope he does a 3-500 patient trial that is a multicenter randomized blinded (even though it is nearly impossible to have a placebo for an invasive angioplasty) study that is open for review of the results.

    Somehow, I doubt the results would show anything substantial.  

    What we do know is that new oral medications like figolimod are reducing the relapses that people suffer and reducing the brain lesions that result from the disease.  Zamboni has not shown anything like that.

    •  Those with an MS diagnosis don't have time... (9+ / 0-)

      Very little in medicine has been validated by a double-blind randomized controlled trial (DBRCT). When an insurance company does not want to pay for something, they demand a DBRCT. When there is a money-maker for a medical specialty and the insurance companies have it built into their rates, no DBRCT is needed.

      As you point out, a DBRCT would be nearly impossible for CCSVI: probably unethical, very expensive, very lengthy. Who needs it? Who wants to pay for it?

      If I had MS, I would be more-than-happy with accurately reported treatment trials.

      There is no reliable test for MS. Its symptoms can be identical to Lyme borreliosis. Taking an immunosupressant like figolimod could be a huge mistake. The typical drugs used today to treat MS are some of the most dangerous big pharma offers. They offer only limited relief from symptoms. We can probably do better.

      Every citizen needs to make their own choices. We should be getting accurate information. Limiting considered treatments to those offered by drug companies and those validated by double-blind trials just isn't good enough for a progressing condition like MS. Smart people look at the big picture.

      •  I have extremely strong correlation with MS (5+ / 0-)

        symptoms, so have been sent for head CTs about four times in the past three years, by a few different doctors.

        This journey started with symptoms, then led to a Lyme/babesia finding in my blood, a history which shows increasing symptoms over six prior years (from a likely bite event that I can recall) and is continuing.

        I find the possibility here interesting and would also like to see more research and/or practical studies of Dr. Zamboni's initial work.

        "So, please stay where you are. Don't move and don't panic. Don't take off your shoes! Jobs is on the way."

        by wader on Wed Aug 25, 2010 at 02:24:47 PM PDT

        [ Parent ]

  •  Food and Drug Aministration (6+ / 0-)

    The FDA is usually the go-to for definitive drug information.  As with other government agencies, the competent people have either quit in disgust or have been driven out by cronyism.

    Lately, there has been a change for the better, though.

    Don't look back, something may be gaining on you. - L. "Satchel" Paige

    by arlene on Wed Aug 25, 2010 at 05:03:41 AM PDT

    •  My hope for this administration... (6+ / 0-)

      holds special interest that the FDA and USDA will be reformed, as quickly as possible. Agree about the loss of competent people in the agencies. The Bush administration did incalculable damage with their slashing of budgets, closing of testing labs, and other homage to the giant food corps.

      Interestingly, the FDA issued a release yesterday about a company's "voluntary recall" of its NeuroBalloon Catheter (Integra LifeSciences Corp, NJ). Link.

      •  The federal government does not (2+ / 0-)
        Recommended by:
        wader, IreGyre

        have power to make recalls. They have to be voluntary — tho sometimes after a lot of pressure.

        They are trying to get more power for the FDA to make recalls.

        I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

        by samddobermann on Wed Aug 25, 2010 at 02:16:02 PM PDT

        [ Parent ]

  •  90% of the Statistics Are Wrong (7+ / 0-)

    The other 90% are also wrong. :-)

    Between the monopolies of Big Pharma and the liberal attacks on innovation, new ideas fight a very tenuous battle for survival while kookdom thrives through desperation.

    This is a very good diary IMO I think in addressing a terrific problem.

    You don't need conspiracy to diagnose the problem.  Simple inertia does fine.

    The dictatorship of the Statistician is symptomatic.  Statistics is an enormously valuable tool but it often overrules science with hidebound obeisance to custom rather than math or science.

    Finally, finally after decades of research, clinical trials, a cancer vaccine has been approved that should have been approved years ago.  From the little knowledge I have, Provenge is not a great therapy but the cost is enormous and must be under our broken system.

    I would love to believe that the old-fashioned science is replacing political science at the FDA but I see little evidence.

    The solution is rather obvious IMO.  Competent management at the FDA is mandatory but instead all we usually get is more abominable nomen.

    Best,  Terry

    •  Science advances (6+ / 0-)

      one funeral at a time--a famous quote which I've heard attributed to various physicists (Feinman? Einstein? who knows.) But in any case, it's true. Once the entrenched die off, the newer ideas can find a space to move in to the mainstream. Otherwise they are kept carefully outside.

      Partly this is human nature (we don't want to admit we were wrong, and we don't want to lose status) but I do think there is some institutional funny business going on too...it all has to do with money, of course.

      "Grab a mop!" --the President.

      by sillia on Wed Aug 25, 2010 at 07:30:01 AM PDT

      [ Parent ]

      •  I had a professor, a wonderful storyteller, who (6+ / 0-)

        loved to repeat the maxim that the old guys had to die off before new ideas could advance.

        And no one ever was a better example than he was himself.

        I do think there is some institutional funny business going on too...it all has to do with money, of course.

        I wish it were just money.  Corruption is far easier to deal with than true believers.

        Every clinical trial is flawed in some way.  The volunteers are not digits.  They are real people with individual differences.  The biostatistician must make things fit that don't.  They construct an argument that is little different from that of a lawyer in a court of law.  And then they call it Truth.

        For those who want to deny, there will always be evidence that anyone with even a nodding acquaintance with statistics can ferret out.

        Why with all the advances in just the last few years in deciphering the genome is there so little new available?

        The conventional wisdom has it that it is all so much more complicated than we thought.

        When was science ever different that way?

        And is it not likely that acceptance of what is most likely true is hard for those grounded in the past?

        That's my true belief and I will stick with it because that's my liberal bias I will hold until I am gone. :-)

        Best,  Terry

        •  We want magic bullets, (4+ / 0-)

          or nothing! apparently. Good comment.

          And, yes, keep holding your ground. :-)

          I wish Carl Sagan were still with us. His book, A Demon-Haunted World, is very relevant to today.

          "Grab a mop!" --the President.

          by sillia on Wed Aug 25, 2010 at 10:46:53 AM PDT

          [ Parent ]

        •  Terry, this is a great comment. (4+ / 0-)
          Recommended by:
          wader, sillia, IreGyre, MsGrin

          Paul Ewald, an evolutionary microbiologist, says that he is looking at microbes as a cause of many diseases.  They mutate quickly and can be quite latent.  My comment is from memory, but he said something like 80% of research dollars is in genetics these days, and very little on microbes. He would like to see the pyramid reversed.

          The book for most of us is "Plague Time".

          Thanks.

          "Never, desist till we ... extinguish this bloody traffic, of which our posterity, will scarce believe that it suffered a disgrace and dishonor to this country.

          by Regina in a Sears Kit House on Wed Aug 25, 2010 at 11:01:06 AM PDT

          [ Parent ]

          •  much of the money is on research (2+ / 0-)

            into the genetics of microbes. He may be pissed that he hasn't been funded.

            I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

            by samddobermann on Wed Aug 25, 2010 at 02:21:33 PM PDT

            [ Parent ]

            •  That would be, uh, no. He is (3+ / 0-)
              Recommended by:
              kaliope, IreGyre, Joel Spinhirne

              at the top of the heap in evolutionary microbiology.

              Dr. Barry Marshall, an Australian, who eventually was

              awarded the Nobel Prize in Physiology or Medicine to Dr. Marshall and his long-time collaborator Dr. Warren "for their discovery of the bacterium Helicobacter pylori and its role in gastritis and peptic ulcer disease

              struggled mightily to gain acceptance of his bacterial theory as a cause for ulcers.

              Finally, he

              in 1984, Marshall drank a petri-dish of the bacteria and soon developed gastritis with achlorhydria

              from Wiki.

              He was well aware that

              German Researchers early during the century did publish several studies that alluded to a bacterial infection as being the principal cause of stomach ulcers but failed to attract wider interest or demonstrate an acceptable proof

              from Wiki

              Contrary to popular belief, a single prominent researcher or influential specialist can derail promising research and probable treatments.  The very first published information about bacteria causing gastroenteritis goes back to the 1870's.

              But this timeline will do for now.  Notice that the Greek government fined Dr. Lycoudis for treating patients with antibiotics for Peptic Ulcer Disease (PUD)>

              1950–1970

              1951
              J. Allende publishes a book describing the treatment of gastric ulcers with penicillin.[2]
              1953
              Dintzis and Hastings are able to stop urease production in mice with antibiotics, suggesting a relationship between urease and a bacterial infection.[18]

              1954
              Palmer publishes a study which finds no bacteria in the human stomach. He concludes earlier discoveries were a result of contamination. Unfortunately, he chooses not to use a silver staining method, which will be later used to reveal H. pylori by Warren and Marshall.[19]
              1955
              Tarnopolskaya observes that penicillin seems to cure some peptic ulcers.[13]
              Moutier and Cornet suggest treating gastritis with antibiotics.[13]
              Kornberg and Davies observe that antibiotics reduce urease in cats.[20]

              Ammonia
              1957
              Charles Lieber and Andre Lefèvre discover that antibiotics reduce gastric urea to ammonia conversion.[21]
              1958
              Gordon observes that penicillin cures some peptic ulcers.[13]
              John Lykoudis successfully treats his own gastroenteritis with antibiotics.[22]
              Lieber and Lefèvre present their results at the World Congress of Gastroenterology in Washington. It is not well received because of the widespread belief that bacteria cannot survive in the human stomach, due to Palmer.[23]
              1959
              Lieber and Lefèvre publish a follow-up study demonstrating that antibiotics prevent the conversion of urea to ammonia in the human stomach.[24]
              Conway et al. call into question the extent of urease produced by bacteria in mice, as an argument against the bacterial theory of PUD.[25]

              Campylobacter fetus
              1960
              Vital and Orrego observe campylobacter-like organisms in the stomachs of cats and dogs.[26]
              Lykoudis is awarded a Greek patent (#22,453) for his antibiotic treatment of PUD.[22]
              1962
              Susser and Stein publish a paper identifying a cohort phenomenon of PUD in England. This is taken as evidence for stress causing PUD.[27]
              1964
              Lykoudis presents his antibiotic treatment for PUD at a meeting of the Medico-Surgical Society in Greece. He is largely shunned by the medical establishment.[22]
              1966
              Lykoudis' manuscript is rejected by the Journal of the American Medical Association.[22]
              1967
              Susumu Ito describes campylobacter-like organisms attached to a gastric epithelial cell.[28]
              1968
              Lykoudis is fined 4,000 drachmas for treating PUD patients with his treatment, which includes antibiotics.

              "Never, desist till we ... extinguish this bloody traffic, of which our posterity, will scarce believe that it suffered a disgrace and dishonor to this country.

              by Regina in a Sears Kit House on Wed Aug 25, 2010 at 04:35:01 PM PDT

              [ Parent ]

          •  bacteria vastly underappreciated (3+ / 0-)

            they can form biofilms which are highly resistant to both anitbiotics and phagocytes

            they can lose their cell walls and hide out inside cells (L-forms)

            •  Yes, see Lynn Margulis. (2+ / 0-)
              Recommended by:
              42, kaliope

              "Never, desist till we ... extinguish this bloody traffic, of which our posterity, will scarce believe that it suffered a disgrace and dishonor to this country.

              by Regina in a Sears Kit House on Wed Aug 25, 2010 at 10:32:58 PM PDT

              [ Parent ]

            •  Yes... over and over a pathogen is found (3+ / 0-)

              to be at the root of many conditions after many years of looking elsewhere... genetic and immunological complications and other interactions and mechanisms can all mask it and medicine spend years in a dead end in a medical hall of mirrors elaborating complex explanations and treatments and deep down they know that they are missing something...

              Whether an initiator that is the first cause and immune system problems then take over or it is a chronic condition with viruses or bacteria dormant or masked by their bio-films or evolved immune system "invisibility" factors... and persisting as the actual cause... they may still be the true causes... whether it is atherosclerosis caused by bacteria related to tooth and gum disease or the suspicions that some extreme obesity is due to a bacteria mediated change to fat cells and the list goes on. It stands to reason that in a world full of microorganisms that our complex immune system is there for more than the common cold or wound healing... It does things and reacts and adapts day in and day out with most of its activity unknown or misunderstood...

              Even a lot of aging is probably due to incremental damage from bacteria and viruses and our immune system fighting them off... and less than perfect repair jobs after winning the "war" or the latest battle against our microscopic neighbors... We do have an uneasy alliance with all the "friendly bacteria" we co-exist with and have to constantly keep a balance of our immune system and our local environments for an optimally stable existence... We don't really have a way to identify and quantify the Viral load of suppressed and or neutralized remnants that infest our bodies over the years... Damage from other environmental factors and just internal oxidation and accumulation of AGE compounds can impair repair functions or allow dormant viruses etc. to re-emerge.

              It may be that in years to come that inexpensive automated, multi-parallel ultra sensitive testing will catch markers for many of these undetected viral and bacterial challenges that may subtly/indirectly degrade our health & lives without becoming clinically obvious right away.

              Our medicine is an interventionist not a prevention based "health maintenance" system. And mainly because we still do not know enough to do that reliably beyond... eat right, get exercise and rest... Instead we have to operate within the limits of what we know and wait till there is something obvious to treat... put out specific types of diagnosed "fires" with approved methods... and it is as if the types of fires are often misunderstood and the wrong substances/methods are often misapplied to put them out.... and fire prevention is good only for some types of "fire"... the rest are outside of the officially understood and administered mind set...

              Our definitions of optimal health are rudimentary and we do not have inexpensive and comprehensive ways to  monitor or understand our full baseline physical operation on a daily basis it is just not cost effective and knowledge gaps are still unclear and the technology not ready (sort of minimally invasive personal monitoring in the internet age)... we feel sick or we feel good. And doctors can test for other things that may asymptomatic that are on the usual age appropriate/risk group list... beyond that is a huge unknown... like the deep ocean... we know so little we can pretend there is not much more to find out or understand and yet every new look yields tantalizing glimpses of the magnitude of our ignorance.

              Pogo & Murphy's Law, every time. Also "Trust but verify" - St. Ronnie (hah...)

              by IreGyre on Thu Aug 26, 2010 at 04:04:05 AM PDT

              [ Parent ]

        •  most protocols start out as mavericks (2+ / 0-)

          A physician treating CCSVI in Buffalo - Dr. Scalfani, has noted "I was once called the "lunatic fringe from Brooklyn" at a national meeting of trauma surgeons because I was suggesting that not all patients with injured spleens needed to have them taken out. Now saving the spleen is the standard of care ....who got the last laugh!"

    •  hi Terry, I also have seen where the statistics (5+ / 0-)
      Recommended by:
      wader, kaliope, sillia, terryhallinan, MsGrin

      were captured, but the researchers, would not publish anything outside their pre-established construct.  Someone recently said, I paraphrase, statistics don't lie, people do.

      All that said, medicine by check box is way too much the norm.  Medicine is a lot art and empathy and some really good background.

      Thank you.

      "Never, desist till we ... extinguish this bloody traffic, of which our posterity, will scarce believe that it suffered a disgrace and dishonor to this country.

      by Regina in a Sears Kit House on Wed Aug 25, 2010 at 09:45:22 AM PDT

      [ Parent ]

  •  Borrelia bacteria, aka lyme disease (7+ / 0-)

    has also been found at autopsy in brains of MS, Parkinson's and Alzheimer's victims. A borrelia infection can 'mimic' these conditions, or you could say they can cause them, depending on how cause and effect is teased apart.

    So I think there may be MULTIPLE causes of MS. Perhaps the XMRV virus, perhaps also others, perhaps also borrelia or other bacteria, perhaps the constriction problem too, as part of or one of the underlying causes. I have always found Dr. Swank's research on MS very exciting--he achieved complete remission in most of his patients (especially when starting early in their diagnosis) with dietary change. Low fat, whole foods, etc.--of course strict adherence to this diet would give you better blood flow (it's the same approach as Dr. Ornish's heart disease diet) so Swank's results would fit in very nicely with the constriction hypothesis. Say some or most MS patients have constriction (physical and/or sluggish blood or plaque buildup in arteries)--if so, then a surgical PLUS a dietary approach would make a lot of sense. If there is also an infectious agent (virus, bacteria) perhaps better blood flow to the brain allows the body to better fight off the infection on its own. Or, if treatment was needed the antibiotic or antiviral would do its job much better if blood flow to the brain was unconstricted.

    I like how all these theories can work together. I'm not a doctor, I'm just a lyme patient who reads a lot, so I'm babbling, but I find it all very interesting.

    "Grab a mop!" --the President.

    by sillia on Wed Aug 25, 2010 at 07:40:55 AM PDT

    •  "It is not going to be doctors that fix this." (11+ / 0-)

      That quote came from an MD I talked to years ago. He said patients were going to have to demand changes to get our medical mess fixed.

      MDs are run out of business just for not conforming. So how many changes can we expect to come from them? Lyme borreliosis treatment, which our nonprofit initially focused on, is just one of the more egregious examples. There has been a 25-year campaign to vilify doctors who responsibly treat the disease. It really has nothing to do with science. What is positioned as science is just another propaganda tool.

      •  This is true (6+ / 0-)

        "Good" science is ignored. To use my dietary approach example again, 50 years of good science shows that heart disease is 99% preventable with dietary change alone. The evidence for this keeps accumulating. Yet, do doctors ever mention this to patients? It's always prescriptions for statins (no evidence these prevent heart disease in most people), stents for clogged arteries (a lot of evidence this is not helping and even harmful) and bypass surgeries that often injure your brain. It looks like a giant bandwagon of expensive medical care that they toss patients onto, with no regard (in the overview) for how this is helping the individual or the population to get healthier.

        Our whole society, all the institutions, are promoting this expensive and useless way of dealing with disease. Who does it benefit? The healthcare industrial complex? Drug companies? Insurance companies??

        Meanwhile responsible doctors who treat patients successfully with diet (Ornish, Esselstyn, Barnard, McDougall, others) are labeled as kooks on Quackwatch.

        "Grab a mop!" --the President.

        by sillia on Wed Aug 25, 2010 at 08:35:08 AM PDT

        [ Parent ]

      •  "There has been a 25-year campaign... (5+ / 0-)

        to vilify doctors who responsibly treat the disease."

        I learned about lyme disease on DK when some diarists wrote a great deal about it during 'Lyme Disease Month.'

        Soon after I found a tick bite, which I'd had for a couple of days. Went to my doctor who knew nothing about the disease, and who offered to give me a test that was recommended by whoever managed her practice. (Treatment info came up on her Blackberry!) When I asked for more information, she fired me as a patient!

      •  meanwhile (3+ / 0-)

        patients should get their antibiotics from international or veterinary sources so the docs can avoid surveillance for prescribing them. considerably cheaper in many cases.

    •  About blood flow (6+ / 0-)

      A stray thought - Lyme caused my dysautonomia which had the effect of very low blood pressure for me.  For awhile it was averaging in the 80s and 90s over 50s and 60s.  It looked as if my kidneys were failing when that was the case, seemingly because the low blood pressure meant that my kidneys weren't having sufficient blood travel through them to get the filtering done.  We improved my BP and my kidney function perked up.

      I am supposing that low blood pressure might amplify the sluggishness you are commenting about.

      "Now that I have a disease that doesn't exist, nothing surprises me." --John commenting on LymePolicyWonk 8/4/10

      by MsGrin on Wed Aug 25, 2010 at 12:13:58 PM PDT

      [ Parent ]

      •  sounds right to me (3+ / 0-)

        I wonder if people can get low blood pressure along with hypercoagulation (high fibrin/too much clotting)? I never thought about it that way but I know Lyme (and presumably other illnesses) can cause hypercoagulation which would indeed reduce your blood flow and create all kinds of problems, like the kidney function as you say, and lack of oxygen. Would that condition also bring about low bp, or would the two conditions be connected in some way? Just thinking aloud here, but in both cases even if unconnected, it seems to me brain function and immune function would be affected.

        "Grab a mop!" --the President.

        by sillia on Wed Aug 25, 2010 at 02:12:24 PM PDT

        [ Parent ]

    •  YES... multiple causes for a lot of ills (2+ / 0-)

      complicate the research... double blind with one variable... the common ground may be specific mechanisms in the body and metabolism/genetics BUT multiple vectors can and do interfere in similar ways but need somewhat different treatments at different times and different interventions and preventions... and it stands to reason that some cures or treatments may be helpful for one cause but useless or catastrophic for others...

      "first do no harm"... but harm is done through ignorance or error all the time...

      Pogo & Murphy's Law, every time. Also "Trust but verify" - St. Ronnie (hah...)

      by IreGyre on Thu Aug 26, 2010 at 04:10:55 AM PDT

      [ Parent ]

  •  Joel, will you write to me, please? (2+ / 0-)
    I actually need a diarist for Chronic Tonic tomorrow night - would be interested if you'd allow me to repost this...

    Thank you for considering it.

    "Now that I have a disease that doesn't exist, nothing surprises me." --John commenting on LymePolicyWonk 8/4/10

    by MsGrin on Wed Aug 25, 2010 at 11:28:08 AM PDT

  •  Latrile! Cured cancer, driven out of the country (0+ / 0-)

    thank goodness.

    Yes much in medical practice hasn't been put through DB clinical trials. That is why the new emphasis on evidence backed medicine is so important. It is hard to get many doctors to change what they have been doing for years and they are convinced it helps.

    Even studies that show no effects compared to no treatment are ignored or brushed off. Doctors do not understand statistics and how they are used.

    Neither do a lot of people here. Statics do not prove any "scientific fact;"  they can be used to disprove assertions and hypotheses.

    Frankly this 'cure" sounds like a whole lot of things that have come before. Sometimes these treatments kill the patient. Many treatments can cause death or damage. That is why controlled studies are important. Most of the times these brilliant different paradigms die a deserved death.

    Sometimes there are innovations that turn "accepted practice" on its head and of course there is resistance. But if the discoverer's research is good, he will be able to get at least one other iconoclast to run another study. And another. And it will be accepted.

    Such is what happened when The Doctor (I can;t recall his name) showed that ulcers resulted from a bacteria and that the current treatment was not just ineffective but harmful. He showed it by several different experimental modalities. It absolutely shocked the establishment. But not too many years later it was accepted and the whole practice changed.

    Pasteur had a lot of opposition to his new fangled germ theory but it was accepted piecemeal then by virtually all.

    Your idea about insurance corps clinging to an expensive course of treatment because they calculated the cost rather that a significantly cheaper treatment is bosh. but first it needs to be proven to be of value.

    I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

    by samddobermann on Wed Aug 25, 2010 at 02:51:25 PM PDT

    •  look upthread (1+ / 0-)
      Recommended by:
      Regina in a Sears Kit House

      at the actual time it took to get a bacterial cause of ulcers recognized - almost a century

      •  nonsense, It was really quicker. (0+ / 0-)

        i developed an ulcer in the early 80s which is why I researched it.

        I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

        by samddobermann on Thu Aug 26, 2010 at 01:53:27 PM PDT

        [ Parent ]

    •  Bosh? not so, treatments vs. lawsuits (1+ / 0-)
      Recommended by:
      Regina in a Sears Kit House

      and the quarterly bottom line? Established practice is the safe zone... and having treatments/medications accurately factored into the expense projections is fundamental to the health insurers business model. They are not happy about fast/erratic destabilizing changes unapproved alternate therapies that are outside their plans and forecasts... too many variables...
      too much danger of cutting into profits in several ways or just destabilizing things... everything kept in narrowly defined prescribed format is the comfort zone financially speaking... unknowns kept to a minimum and easily defined areas for denial and cost saving... the payouts for medication goes to allied corporations and synchronized industries with carefully agreed rates for ones that may or may not be optimum for treatment but are optimum for the bottom line where possible... delay changes, choose some variations for economic not medical reasons... but still supported by enough paid for experts to be supportable.

      Pogo & Murphy's Law, every time. Also "Trust but verify" - St. Ronnie (hah...)

      by IreGyre on Thu Aug 26, 2010 at 04:26:50 AM PDT

      [ Parent ]

  •  Good doctors reject evidence-based medicine (4+ / 0-)

    There is a myth about science and medicine. Translate "evidence-based medicine" into "insurance-based medicine" and you are not far from the truth.

    A major force in medicine is for MDs to collaborate with insurance to maintain a monopoly. Clinical trials pose as science, but serve primarily to enforce propaganda.

    As with Marcia Angell, quoted in the original diary, I took a long time to come to this conclusion.

    What passes as medical science is often embarrassingly bad. Rarely are medical researchers called out on their bad science.

    Better doctors, meaning ones who do a good job treating patients rather than working to impress their doctor friends, reject the evidence-based medicine paradigm. Sure, it is one piece of the big picture, but a piece usually driven by corrupt motivations. Good doctors know this.

    All this rhetoric, samddoberman, driven by the propaganda. No one involved with CCSVI or XMRV claims a "cure". That's your word. I don't know if your "iconoclast" who steps up to verify the work of the innovator is supposed to be another innovator or a traditionalist, but it rarely if ever happens that way.

    As for Marshall and H. pylori, as Regina above states, MDs had to be drug kicking and screaming into the new view. They had stuck to their "stress causes ulcers" theory to the point of absurdity. And with no science, by the way. Antibiotics were observed to be effective for ulcers in the 1950s. Now, history gets rewritten and H. pylori is supposed to be an example of how efficiently medical science works. Don't buy it.

    I never said insurance companies would dismiss a cost effective treatment. I said they will reject a short-duration high dollar payout treatment, not factored into their rates, even if it makes the most sense long-term.  They aren't forward thinkers. They should not be managing medicine anyway. They really don't care how much medical care costs. They will gladly pay for expensive drugs and operations as long as there are no deviations from their underwrightlng assumptions and they get to add their profit percentage on top.

    •  And don't use the word "proven" (2+ / 0-)

      As someone above said, nothing is "proven" in science. We make some observations, do some experiments, and decide what seems most reasonable. Some things look almost certain, others, not so much. Nothing gets proved.

      •  no, things get disproved all the time. (0+ / 0-)

        nothing is proved but the weight of evidence becomes more clear.

        I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

        by samddobermann on Thu Aug 26, 2010 at 01:41:51 PM PDT

        [ Parent ]

    •  It is like they are Forensic labs in a corrupt (2+ / 0-)

      criminal justice system... they provide evidence on demand for their employers... the same mind set... could be fake results to support something they think is real... and it helps them and their industry... just like doctored DNA results can put away bad guys... that we "know" are bad but don't have the evidence for..

      Theory first... made to order studies/tests to support it afterwords... since it has to be right or it pays better if it is right... lots of fudging and tweaking for a "good cause"... the money someone is getting... it is amazing how easy it is to believe a different reality when your own success and well being are on the line...

      It is difficult to get a man to understand something when his salary depends upon his not understanding it. - Upton Sinclair

      "Our rulers deliver favors to their clients...For in a predatory regime, nothing is done for public reasons. Indeed, the men in charge do not recognize that "public purposes" exist. They have friends, and enemies, and as for the rest—we’re the prey."
        - James K. Galbraith

      Pogo & Murphy's Law, every time. Also "Trust but verify" - St. Ronnie (hah...)

      by IreGyre on Thu Aug 26, 2010 at 04:50:25 AM PDT

      [ Parent ]

    •  Your response a familiar one (0+ / 0-)

      with a new twist re "there are no deviations from their underwrightlng assumptions "

      You are convinced that everything and everyone is a conspiracy against your position on this new wonder treatment.

      No the ulcer tx is an example of big change being resisted until more doctors were convinced to run their own tests/studies.

      Yes, it was just the corrupt system that turned on that poor guy who discovered the secret cause of Autism. A lot of folks got rich off of that "brave doctor."

      I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

      by samddobermann on Thu Aug 26, 2010 at 01:40:17 PM PDT

      [ Parent ]

  •  Tipped, recc'd, bookmarked for community edu. (1+ / 0-)
    Recommended by:
    Regina in a Sears Kit House
  •  CCSVI (2+ / 0-)

    There are a lot of unknowns re: CCSVI and MS. No one knows if it's a correlative or causative relationship, and in either case, what to do about it long term.

    But it's pretty clear that available data results can be said to demonstrate a link between the vascular abnormalities known as CCSVI and Multiple Sclerosis.

    The CCSVI Imaging Study by the University at Buffalo  (Feb 2010) had 500 subjects, each had Doppler  ultrasound of head, neck + an MRV.  Results confirmed the reduction of blood flow: 56.4% of MS patients demonstrating narrowing of their extracranial veins (CCSVI), 22.4%  non-MS test subjects demonstrating narrowing.

    I take a bit of an exception to your assertion
    "Clinics providing surgical correction to CCSVI are being opened in medical tourism sites worldwide."  Treatment is available worldwide, but all of the places that I know - and I am an executive with an international hospital - are well-established, and have not 'sprung up' in some sort of venal and opportunistic fashion.  I don't think this article meant to imply that, but there is no shortage of anti-CCSVI theorists who will take the implications inherent in the "clinics springing up" verbiage to buttress their argument that diagnosis for and treatment of CCSVI is medically unsavory.

    Hospital Angeles in Tijuana is part of the largest private hospital network in Mexico - they have treated hundreds. It's a state-of-the-art hospital and the medical team treating CCSVI  includes a Stanford Fellow.   Star Medica in Merida Mexico was the hospital of record in the event of an emergency when Pres. George Bush was traveling in Mexico in 2004 - they are providing treatment, as is American-founded Amerimed Hospital in Cabo San Lucas Mexico.

    The other main providers are in Bulgaria and Poland - again, major hospitals.

    Nice article!

    •  You are right, no disparagement of Intl treatment (1+ / 0-)
      Recommended by:
      Regina in a Sears Kit House

      Thank you. You are correct, my choice of words was not the best. I did not intend to imply that international treatment centers were being opened to capitalize on a financial opportunity, and, certainly I do not want the impression that the international centers are doing anything wrong. I was trying to reinforce, in a short article, that many patients have made the choice to try catheterization for treatment of CCSVI.

      I would be interested in references to comparisons of U.S. insurance-paid medical treatment vs. international patient-paid services.

      MS is a progressive condition. The U.S. medical system moves incredibly slowly. Each person needs to make their own choices. We need the best information possible.

      •  thanks for your reply! (1+ / 0-)
        Recommended by:
        Regina in a Sears Kit House

        in this age of taking a sound bite and running with it, I thought it important to point out the possibility of presuming a nuance to your word choice that you clearly did not intend.  

        There are no US insurance-paid medical treatment comparisons available as yet - while angioplasty is a known procedure, its application to CCSVI for treatment of MS (technically, venoplasty) is a new application and is not FDA approved.  
        Interventional radiologists are not able to provide the treatment in the US and Canada until clinical trials are complete.  

        International treatment costs are around $10K. They vary - lower for clinics in Europe (but then you have to add in the cost of hotel stay and travel), higher for major hospitals that are all-inclusive in their pricing (including all hospital stay, associated medical costs etc).  

  •  I am following the XMRV studies (2+ / 0-)

    but there have been many hopeful leads in CF/MFS/FM, and I'd rather have slow progress but solid.

    My own case I think is due to infection; I had a massive case of that year's flu, while immunocompromised (pregnancy; the child is autistic) and "never got over the pregnancy" physically. I personally think I have lasting CNS damage from it. But I personally think that once we do start isolating causes we will discover a lot of different things under the umbrella of CF/MFS/FM.

  •  excellent diary (3+ / 0-)

    Well-written, sourced, and provocative. My daughter has cystic fibrosis. I've always thought that the small number of CF patients is a net minus, but perhaps it's a plus. "We" have pretty much total control of research because no one else gives a good goddamn. The Cystic Fibrosis Foundation is amazingly innovative and effective, probably as a result of having little interest from the big drug companies. It's the small pharmaceutical companies and lesser-known research universities that are making amazing discoveries in CF. Every so often, somebody has a miracle cure, but they've always been, I think, sufficiently debunked. That said, there is always the possibility of anecdotal improvement that really doesn't pan out for the larger CF community. As different as cases of MS can be from each other, I'm guessing this is true of treatments for MS as well.

    Keep on keeping us informed!

    •  Each perspective is interesting (1+ / 0-)
      Recommended by:
      Regina in a Sears Kit House

      Thanks for another perspective. Medical stuff is always most important at the individual level. The major problems needing fixes are at the macro level. Everything gets executed somewhere in the middle: by insurance claims clerks, medical schools, drug company business plans, medical review boards, academic/government alliances, etc.

      Chipping away at the middle will not fix things. We need fundamental changes oriented toward giving people the best, most efficient medical care possible.

    •  the CF foundation and its research (0+ / 0-)

      and support for those with CF is truly amazing. In fact their work was one of the things that impelled a lot of the thinking concerning evidence based medicine.

      It was their accumulating of data and study that led the way for better Tx and a better understanding of what pooled data can do.

      Most kids with CF died by their teens.  A friend of mine had a son that died at 12 after He refused another surgery. No they live to what may be normal life expectancy. it is a bear to live with though.

      I'm asking you to believe. Not in my ability to bring about real change in Washington ... I'm asking you to believe in yours. Barack Obama

      by samddobermann on Thu Aug 26, 2010 at 01:51:33 PM PDT

      [ Parent ]

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