QUIET TIME

I find David Bell's views very interesting.

http://www.davidsbell.com/LynNewsV6N5.htm


Lyndonville News
Information and Support for the ME/CFS/FM CommunityDavid S. Bell MD, FAAP, Editor
Volume 6, Number 5: December 2009
Web site: http://www.davidsbell.com
—————————————————————————————————
I hope that everyone is able to have a good holiday season.
XMRV: Quiet TimeMy thanks to all those who came to the lecture December 6th on XMRV, and to all those who have kindly donated to the research group. None of the research group is paid from these funds, and if we were to stop working the money will be forwarded to some other group working on ME/CFS, probably WPI. In the spirit of full disclosure, pizzas and other relatively inexpensive luxuries do come from these funds, but no vacations in Maui. I had wanted to write back to persons who have donated but that has proven impossible.The December 6th lecture was well attended. The reason I did not tape it or put it on the web is for two reasons. First I do not know how and we are kind of busy and I didn't want to take time to learn. And secondly, I expect that every few weeks the material will change and I want to keep this talk up to date. I expect that six months from now the talk will be completely different.I have had a few requests to give a talk on XMRV, and I am happy to do so, it is one of the joys of being retired. The material I present will be either published, from very credible public sources, or my own personal opinion. I will not share back room gossip, even if it is the stuff that makes my socks roll up and down. My goal is to insist that good science goes into discovering what role, if any, XMRV has in ME/CFS. I will go anywhere in the US if the supporting group covers costs and offers a small honorarium. I think spin off benefits from these talks will be to re-invigorate support groups. Dr. Klimas said in her last talk that now is the time for people to get active and I completely agree.ME/CFS Essay: Nature Abhors a Vacuum I have a patient in my practice by the name of Sandra Cousins (an obviously false name). She developed CFS somewhere around the age of nine, and I can remember her confusion going from doctor to doctor, occasional visits to the psychiatrist and acupuncturist. Over the years she has been diagnosed with Lyme disease, depression, atypical MS, arthritis, migraine, irritable bowel and lupus, but no one knew what she had. Like many patients, she could tell that, when the medical provider attended to the chart and did not look her in the eye while delivering a diagnosis, the provider had absolutely no idea of what was causing her illness. Same old story.Years went by, and after five years of illness she improved enough to deny the existence of any illness. She was getting by. She could not go out drinking with her college friends because it made her very ill and then have to miss a few days of classes. All she could do was classes and organize her study time well enough to pass. But she was "fine."Work after college was a disaster, as was her love life. But she got by, she was "fine." She stopped going to doctors because they had little to offer except medications that made her feel more ill. She resented being told she was resistant to the obvious truth that she was healthy as a horse.About ten years ago, Sandra went through a change. She decided that she was depressed and that the doctors were right. She took low doses of antidepressants which did little good but made her doctor happy. She joined support groups, went to therapy, and committed herself to accepting the truth. Or at least accepting what other people considered true. Lots of things didn't fit, but at least now she wasn't crazy, she had a legitimate diagnosis, she was depressed. Being depressed and making up somatic symptoms (somatisizing) was a lot better than being crazy. She was no longer lost in the never-never land of no-diagnosis. She belonged. She went on social security disability because she was unable to maintain eight hours a day five days a week because of the depression.When Sandra was evaluated for ME/CFS, she was classic. She did not feel despair, in fact, now that she was "depressed" she felt quite good. Except for the pain, sleep problems, exhaustion, abdominal pain, annoying lymph node tenderness and the foggy memory that is.Nature abhors a vacuum; it is much better to have an incorrect diagnosis than no diagnosis at all. Even when the immunology testing, orthostatic testing, and 2 day exercise testing essentially confirmed the diagnosis of ME/CFS, Sandra was reluctant to believe it. Being "depressed" for the past ten years made her more happy than some unknown diagnosis that doctors didn't believe in.XMRV Study Notes:In a recent note by Suzy Chapman on Co-Cure, she quotes Dr Charles Shepherd as writing "...Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material - stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any.This brings up really important issues in interpreting the results of studies that will come out over the next six months. In my practice over the years, I have seen the whole range of patients from kind-of tired to bedridden orthostatic intolerance. Despite what the different criteria attempt to prevent, much of the diagnosis is based upon using the "force". There are some clinicians who diagnose CFS and I have absolutely no idea of what their patients are like. Through years of observation, I do have a concept of what Dan Peterson's patients are like.So is XMRV in really severe ME? CFS? Orthostatic intolerance? CFS plus POTS? Mild fibromalgia? Atypical MS? CFS with or without depression? Chronic Lyme disease? Multiple chemical sensitivities? And what about stored samples? Samples taken in EDTA or heparin? And so on.So what does this mean? It means that if someone can't find XMRV in a study, it is either because it is not in the patients they tested, or their lab could not detect it even if it was there. Or the strain might be different, or they used the wrong tubes, or the diagnosis was wrong. And on and on. Again using the "force", I would not be surprised if some of the quickest replication studies fail to confirm XMRV. But as long as people do not jump to conclusions too quickly, science will win out. Truth will win out. That’s all I am looking for.Changing Standards to Establish Cause of ME/CFSDr. J Silver in a review in Journal Watch said, "XMRV might be a cofactor in another infectious process, or the immunologic problems of CFS patients may increase their susceptibility to XMRV infection. Patients with depression also have impaired immune function; could psychiatric illness predispose to XMRV? The 4% prevalence of XMRV infection in the control group might indicate that XMRV infection is a risk factor for development of CFS."I am amazed how mainstream medicine is so fixed in their biases against ME/CFS that the concept of XMRV actually causing the illness almost doesn't enter their consciousness. Dr. Reeves, head of the CDC project on CFS has made only one comment to my knowledge, that he "doubted" this would turn out. What a comment. Why not "Interesting…" or "we will see…"Hillary Johnson made some interesting observations. First, "Why wasn't everyone demanding dozens of replicative tests on the prostate cancer findings?" Yet when CFS is implicated we will need twenty studies which replicate the first. And if some poor studies do not find XMRV, they will be given preferential weight to studies that actually find it.Her second point was that "HIV was hailed as the cause of AIDS in the U.S. in the spring of 1984, after the NCI found isolates in fewer than fifty patients. A few weeks later, an NCI scientist isolated the virus from the blood of a nurse in Los Angeles who fell ill with AIDS after a blood transfusion and the virus was found in the donor blood. That's all it took." Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor.During the next six months we will know. I am confidant that enough good scientists will try to replicate the WPI study that a bad study here and there will not bury the subject. Meanwhile, what is happening? It is possible that the skepticism is so great that absolutely nothing is happening now. But my hope is that in back rooms across the world scientists are quietly working on this, designing studies to test blood banks, designing treatment studies. Right now is "quiet time"; I hope they are using this quiet time to make some real progress.Question and AnswerQuestion: How does XMRV fit in with slow onset ME?Answer: I have no idea. But in six months to a year we will know. First option is that XMRV has nothing whatsoever to do with ME, it was a fluke, and no one, anywhere, will be able to find it even when they are looking without bias, and in good patients, and with good science. Secondly, XMRV may have either no symptoms, or relatively minor symptoms, and slowly affects NK cells and lymphocytes, permitting reactivation of other viruses over some time.The Australian government and the CDC may have already done the study revealing the answer, the "Dubbo" study (Hickie I, Davenport T, Wakefield D, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ 2006;333.)As you may remember, a small percentage of persons developed ME/CFS after Epstein-Barr virus, Ross River virus or Q fever. They must have saved blood from those who came down with ME/CFS and those who did not. Test the blood for XMRV. If it is in the ones who came down with ME/CFS, but not present in the blood of those people who had regular mononucleosis and quickly recovered, we would have the answer. Ah…if only it were that simple…
<><><><><><><><><><><><><><><><><><><>
To Subscribe: If you wish to either subscribe or unsubscribe to the Lyndonville News, go to http://www.davidsbell.com/DSBJoin.htm and enter your information. The e-mail subscription is free. Disclaimer Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.
<><><><><><><><><><><><><><><><><><><>
—————————————————————————————————© 2009 David S. Bell —————————————————————————————————

ROLE OF BACTERIAL AND VIRAL INFECTIONS VARIOUS ILLNESSES

Role of Chronic Bacterial and Viral Infections in Neurodegenerative, Neurobehavioral, Psychiatric, Autoimmune and Fatiguing Illnesses: Part 1
Garth L. Nicolson and Jörg Haier
Cite this article as: BJMP 2009:2(4) 20-28

http://www.bjmp.org/content/role-chronic-bacterial-and-viral-infections-neurodegenerative-neurobehavioral-psychiatric-au

ABSTRACT
Chronically ill patients with neurodegenerative, neurobehavioral and psychiatric diseases commonly have systemic and central nervous system bacterial and viral infections. In addition, other chronic illnesses where neurological manifestations are routinely found, such as fatiguing and autoimmune diseases, Lyme disease and Gulf War illnesses, also show systemic bacterial and viral infections that could be important in disease inception and progression or in increasing the number and severity of signs and symptoms. Evidence of Mycoplasma species, Chlamydia pneumoniae, Borrelia burgdorferi, human herpesvirus-1, -6 and -7 and other bacterial and viral infections revealed high infection rates in the above illnesses that were not found in controls. Although the specific roles of chronic infections in various diseases and their pathogeneses have not been carefully determined, the data suggest that chronic bacterial and/or viral infections are common features of progressive chronic diseases.

Introduction
Chronic infections appear to be common features of various diseases, including neurodegenerative, psychiatric and neurobehavioral diseases, autoimmune diseases, fatiguing illnesses and other conditions.1-4 Neurodegenerative diseases, chronic degenerative diseases of the central nervous system (CNS) that cause dementia, are mainly diseases of the elderly. In contrast, neurobehavioral diseases are found mainly in younger patients and include autism spectrum disorders (ASD), such as autism, attention deficit disorder, Asperger’s syndrome and other disorders.5 For the most part, the causes of these neurological diseases remain largely unknown.2 Neurodegenerative diseases are characterized by molecular and genetic changes in nerve cells that result in nerve cell degeneration and ultimately nerve cell dysfunction and death, resulting in neurological signs and symptoms and dementia.2,3 On the other hand, neurobehavioral diseases are related to fetal brain development but are less well characterized at the cellular level and involve both genetic and environmental factors.6, 7 Even less well characterized at the cellular and genetic level are the psychiatric disorders, such as schizophrenia, paranoia, bipolar disorders, depression and obsessive-compulsive disorders.

Genetic linkages have been found in neurodegenerative and neurobehavioral diseases, but the genetic changes that occur and the changes in gene expression that have been found are complex and usually not directly related to simple genetic alterations.2, 6-8 In addition, it is thought that nutritional deficiencies, environmental toxins, heavy metals, chronic bacterial and viral infections, autoimmune immunological responses, vascular diseases, head trauma and accumulation of fluid in the brain, changes in neurotransmitter concentrations, among others, are involved in the pathogenesis of various neurodegenerative and neurobehavioral diseases.2, 3, 5-16 One of the biochemical changes found in essentially all neurological, neurodegenerative and neurobehavioral diseases is the over-expression of oxidative free radical compounds (oxidative stress) that cause lipid, protein and genetic structural changes.9-11 Such oxidative stress can be caused by a variety of environmental toxic insults, and when combined with genetic factors could result in pathogenic changes.14

In the British Jounal of Medical Practitioners well worth accessing the link above and reading the full article.

TIGECYCLINE AGAINST PERSISTENT BORRELIA BURGDORFERI

"Ineffectiveness of Tigecycline against Persistent Borrelia burgdorferi”.
Dr. Stephen Barthold and Dr. Ben Luft

I was rather dissappointed at first when I read the details of the above study.
I remember Pam Weintraube mentioning in her book Cure Unknown that Tigecycline was a new antibiotic that was found to be more effective than others in treating Lyme. Somewhere else I read that it was thought to be 100x more effective than other antibiotics but can't for the life of me remember where. I recently read the latest Brorson research, not widely available and again Tigecycline was considered to be very effective in treating Lyme.

So initially I was dissappointed to read about this above research but then I thought if nothing else it does add to the growing evidence that Borrelia can persistent even after what is considered to be an effective antibiotic treatment.

Then Phyllis Mervine (the founder of CALDA) kindly pointed me to Lorraine Johnson's post and as usual Lorraine puts things so much more clearly. Recognizing the problem is the first step—Persistence

UNDER THE EIGHTBALL

Andalusian Dogs Presents Film:
"Under The Eightball"

This film documentary investigates the human and animal experiments in 1951 at Fort Detrick, Maryland under a hollow metal sphere nicknamed the "Eight Ball". Fort Detrick was the center for the United States biological weapons program from 1943 thru 1969. Is it possible that some diseases of today are a result of uncontrolled experiments gone wrong? From Andalusian Dogs' press releases

The independent film examines heartbreak and corruption in the often misunderstood world of Lyme disease. Under the Eightball chronicles author Lori Hall-Steele's battle with the devastating illness and delves into the alarming origin of the disease and its roots in the US Government's Bio-warfare Program. In their search for answers the filmmakers interviewed top experts in the field including micro-biologist, physicist, M.D.s and P.H.D.s The film includes live footage, historical documents, original animation and archival military footage.

Grey and Russell have included never-before released information gathered throughout the eighteen month production. The soundtrack includes music from The Faint and Orenda Fink, of Azure Ray, both on Saddle Creek Records. The original score was written and recorded by Grey.

Under The Eightball was produced by Michigan based film company Andalusian Dogs and was written, directed and edited by Timothy Grey and Breanne Russell. Executive producers are Justin Blake and Rasheed Ali of Traverse City and New York City.

http://www.ctlymedisease.org/

Through the above link you can click on the trailer to this shocking revelation in this documentary film.

However remember that ticks and Lyme Disease have been around since soon after the Ice Age according to some sources and there are ticks with DNA for Lyme disease found dating back to 1900 in the Natural History Museum.

Could this type of experimentation have contributed to increased incidence as the film suggests but more importantly could it be another reason for the denial seen amongst our Government Health Departments which hinders diagnosis and treatment when so much evidence supports seronegativity and persistent infection.

Under the Eight BallDocumentary
Review by Joseph RobinsonNovember 18, 2009
Every so often a documentary film comes along that is so surprising and inspiring that it has the nagging affect of entering into the deepest hallows of a post-modern cynical mind and acknowledging all that is there. But what ends up so shocking is how in this treatise to expose the evil doing of mankind at its worst is a love so profound as to move your soul despite the horrors of "the truth."Tim Grey and his girlfriend/film partner Breanne Russell direct this documentary tour de force in as a personal of a journey as one can image. This is true documentary story of the bonds of love within a family during the tragic discovery and untimely illness and demise of Mr. Grey's Sister – Lori HallSteele. The tragic illness and unfortunate end is told and filmed as unflinching and honest as one can bear. As witnessed by Grey/Russell' s most telling camera, you travel through an earnest and personal review of her life, the struggle to determine the illness that has its grips on her, and then ultimate journey to the end of her life – and beyond. Grey/Russell and Lori Hall Steele's family are then left in the grief stricken state of asking why?Why indeed.

From this tragic inspiration is born the question of why? Why did this illness occur? What caused the health concerns from the beginning? What was the troubled medical industry responsible for? What role did the environment play? What role did the fact that Lori Hall Steele ran out of insurance play in this tragedy? And finally, what role did pre-communist China, Nazi Germany, the Cold War, and the United States Government have in all this? That's right, from this simple question of a grief stricken "why?" Grey/Russell launch into a line of questions many don't wish to have asked.

In a highly stylized flourish of personal creativity, this documentary art piece dares to take a personal, private, family matter and dig ever so gently and then more aggressively into all that is truth in the manufacture and testing of bioweapons in America.

As told in linear fashion this true-to-life script could easily play out like a courtroom drama in a compressed 2 hour and 4 minute burst of emotional, edge-of-your- seat drama. This line of events is exposed over a period of nearly ten months as the exploration of Lori Hall Steele's illness and what could becausing her to head so fast into unrecoverable sickness. We find out very quickly what ails her is Lyme disease and that this is the reason she is made to struggle so.

From failure to diagnose, to withdrawals of treatment, to refusals to issue known medications that could have prolonged or even saved her life, the tragic first act is rife with head shacking witnessing of just how bad the healthcare system is and what levels of denial we are all willing to accept in the name of capitalism and personal freedom to chose an insurance-based healthcare system.

Then, She dies.

In what has to be the most courageous act of film making I've ever watched, Grey/Russell turns the camera on their own and the family's grief and we are witness to it all. Unflinchingly, we move from hospital to hospice, to final hours as treated by Grey/Russell with a ghostly telling of the time we live with those we love as they live out their end of time. We then are witness to a cinematic requiem in honor of Lori, with a love poem in image to his dear Sister in what is a fantastic musical and ethereal call of a Spirit Home as told through film. In a homage, unsurpassed in recent memory, this scene alone is worth taking the journey, no matter how painful the steps.

As act three unfolds, the tone shifts as Grey/Russell try to get to the bottom of the question of "why." The directors stand on the shoulders of the greatdocumentarians: Michael Moore with Fahrenheit 9/11 and Morgan Spurlock withSuper Size Me, in telling a personal story with an honest and courageous eye while including credible witnesses from a huge cast of supporters. Experts include doctors, professors, medical scientist, government historians, and the like. In the role of character, along side the family and girlfriend Breanne,Tim Grey, filmmaker as partner to the story, uses this modern documentary style to add accessibility and connection to the material. If the audience gets any closer to Tim Grey as filmmaker and the emotional witness in this tragedy, he'd have to adopt us all into his family and hope we brought enough food to pass at his poor sister's memorial reception.

This is all very heavy stuff. It is technical in nature, and at times hard to swallow. But it is worth it. What works with the film is the way the detail is explained in a nicely stylized fashion without patronizing nor "dumbing-down"the material for a "lesser audience." Under the Eight Ball is an intelligent film with a critically important message that could affect us all. If you watch this documentary you won't think of a wood tick, our government, or your family in the same way again.

The climax note to us all involves the town of Lyme, CT. Grey/Russell interview the Mother of two long-ago suffering children of the yet unnamed Lyme disease.

As she explains her children's journey, we are brought full circle to the tragic impact of how fear can kill on and on into the future. The fear we weak humans possess that allowed us to make this nasty germ and unwittingly (or not) unleash it on our own. We learn that her family suffered when the disease was first"discovered. " The facts become ever clear as she tells her story. We realize it is horribly and hauntingly familiar to the one we just watched. And we are all then left with the question: Why is this allowed to happen over and over again?

PSYCHIARTY HELP OR HINDRANCE WITH LYME ,ME/CFS

Do have a look at this blog Life as we know it. This excellent post on Yet more on CBT
"Inappropriate illness beliefs" is itself a type of ideology, a type of belief system. It requires the assumption that if there is no APPROVED objective test for a medical condition, then the condition must belong in the domain of psychiatry. In the history of medicine, the reverse has always been the case. Charcot's hysterics were epileptics and victims of third-stage syphillis. Women with hysterical paralysis turned out to have Multiple Sclerosis. "Cold Mother Syndrome" is now called autism.
http://cfs-facts.blogspot.com/2009/12/yet-more-on-cbt.html

Well worth a read and I find this blog interesting to follow.

I decided to respond :-

Such an excellent and informative post. I like to follow ME/CFS developments as this was my original diagnosis until it was found to be Lyme Disease.
There are so many parallels with these two illnesses and some patients may indeed have both how many of the sickest Lyme patients also have XMRV or visa versa.

However my reason for commenting is that the President of ILADS a psychiatrist presented at the Lyme Disease Action conference last year and what he had to say should be of interest to all Psychiatrists and also ME/CFS as well as Lyme patients. He is not the only Psychiatrist at the forefront of Lyme Disease research and developments. Dr Brian Fallon being another one. What a pity more don't follow their example. Please take time to look at the whole presentations through the following links.
http://www.lymediseaseaction.org.uk/conf2008/bransfieldneuro.pdf

Conclusion
• Chronic infections and immune reactions contribute to causing mental illness.
• Diagnosing and treating Lyme/tick-borne diseases and other infections and immune reactions from them are new treatment opportunities for mental illness.
• Since interaction between infections, the immune and nervous systems can cause mental illness, greater interaction is needed between infectious disease physicians, immunologists and practicing psychiatrists to more effectively treat mental illness.
and
http://www.lymediseaseaction.org.uk/conf2008/bransfieldchronic.pdf

From Controversy to Collaboration
• Psychoimmunologists don’t have to be convinced that infections cause immune dysfunction that in turn causes mental disorders. Some don’t understand brain physiology and need to listen more attentively to psychoimmunologists.
• Since interaction between the immune and nervous systems can cause mental illness, greater interaction is needed between immunologists and practicing psychiatrists.
• It is time to stop fighting each other and direct all our efforts towards fighting these diseases instead

Lyme Disease or Oral Spirochetosis

This is a very interesting U tube presentation.

Many Lyme patients have problems with teeth jaw pain and nerves around that area of the face.

A friend and fellow Lyme Patient being treated by an LLMD having reached a plateau on her current treatment had occasion to need dental treatment which was metronidazole this treatment miraculously lifted her constant head fog, improved her energy and relieved her aching arms and legs. One comment back from her LLMD was one wonders how often dentists are unknowingly treating Lyme symptoms.

QUESTIONS ABOUT ME/CFS

The more I look into the controversy and research available about Lyme Disease the more astounded I am over the mismanagement of the illness by our Health Authorities and organisations responsible for helping us, the patients.

After being diagnosed by a top London Rheumatologist (not ME/CFS specialist) as having ME/CFS I was lucky that my GP and private specialist did not accept his diagnosis and believed my illness to be Lyme Disease. With antibiotics and only antibiotics I have recovered to nearly 100%.

I still take an interest in ME/CFS and have followed the developments recently over XMRV retrovirus with great interest, but also started to look into the politics of the illness and surprise, surprise they are as bad if not worse than they are over Lyme Disease.

Margaret Williams statement of concern is of particular interest.

http://meagenda.wordpress.com/2009/12/12/statements-of-concern-about-cbtget-provided-for-the-high-court-judicial-review-of-february-2009-m-williams/

I never quite understood what was going on over the Judicial Review into the NICE guidelines and probably never will.

However it was good to read these statements from so many good doctors prepared to support the patients cause. What a pity the Judicial Review didn't get to consider them. One day science will no doubt prove what mistakes were made by those writing the NICE guidelines and condemning patients to even worse problems than they had already fighting not just the illness but the denial of a physical condition.

I was even more surprised to read this post about Medical Research Council secret files. Or was I?

http://meagenda.wordpress.com/2009/12/11/the-medical-research-council%e2%80%99s-secret-files-on-mecfs-margaret-williams/

'As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill ill?”'

Was there some big medical cock up? If not then there certainly appears to be now!

Also this report of the APPG (All Party Parliamentary Group on ME) makes you wonder whose working for who.

http://meagenda.wordpress.com/2009/12/14/report-of-meeting-of-the-all-party-parliamentary-group-on-me-by-john-sayer/

So the most important thing I have learned from my experience is to get informed, get to know your symptoms and keep a log and be your own best advocate, guided by our doctors but not blindly following their advice, they are only human after.