This is a fantastic trailer that gets into the impact, severity and politics of ME/CFS. There is also a UK version posted on May 14, 2011.
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The Cancer Treatment So Successful - Traditional Doctors SHUT it Down Posted By Dr. Mercola | April 23 2011 | 74,760 views Download Interview Transcript Visit the Mercola Video Library Dr. Nick Gonzalez is a physician focused on alternative cancer treatment using a three-pronged nutritional approach. Located in New York City, he’s had remarkable success treating patients with some of the most lethal forms of cancer that conventional medicine cannot effectively address. Sources: Video Transcript Dr. Mercola's Comments: Alternative cancer treatments are a kind of "forbidden area" in medicine, but Dr. Gonzalez chose to go that route anyway, and has some remarkable success stories to show for his pioneering work. He didn't set out to treat cancer at ficrst however, let alone treat patients. His originalal plan was to be a basic science researcher at Sloan-Kettering; a teaching hospital for Cornell Medical College. He had a chance meeting with William Kelley, a controversial dentist who was one of the founders of nutritional typing. Dr. Kelley had been practicing alternative- and nutritional approaches for over two decades at the time, led him to begin a student project investigation of Kelley's work, in the summer of 1981. "I started going through his records and even though I was just a second year medical student, I could see right away there were cases that were extraordinary," he says. "Patients with appropriately diagnosed pancreatic cancer, metastatic breast cancer in the bone, metastatic colorectal cancer… who were alive 5, 10, 15 years later under Kelley's care with a nutritional approach." This preliminary review led to a formal research study, which Dr. Gonzalez completed while doing his fellowship in cancer, immunology and bone marrow transplantation. The "Impossible" Recoveries of Dr. Kelley's Cancer Patients After going through thousands of Kelley's records, Dr. Gonzalez put together a monograph, divided into three sections:
The average survival for that group was about 60 days. A second group of seven patients who did the therapy partially and incompletely (again, dissuaded by well-intentioned but misguided family members or doctors), had an average survival of 300 days. The third group consisting of five patients, who were appropriately diagnosed with advanced pancreatic cancer and who completed the full program, had an average survival of eight and a half years! In Dr. Gonzalez' words, this was "just unheard of in medicine." One of those patients included a woman diagnosed by the Mayo Clinic with stage four pancreatic cancer who had been given six months to live. She'd learned about Kelley's program through a local health food store. She completed his treatment and is still alive today, 29 years later. The Truth about Medical Journals: Why Gonzalez's Book Was Never Published However, despite—or rather because of—the remarkable success of the treatment, Gonzalez couldn't get his findings published. "We tried to publish case reports in the medical journals; the whole book, parts of the book, individual case reports—with no success," he says. This is an important point that many fail to realize. Those of us who practice natural medicine are frequently criticized for not publishing our findings. My justification for that is that it's not going to be published anyway, and Dr. Gonzalez' anecdotal story confirms this view. His mentor and supporter, Dr. Good, was one of the most published authors in the scientific literature at that point, with over 2,000 scientific articles to his name. He'd been nominated for the Nobel Prize three times, and yet he was refused because the findings were "too controversial," and flew in the face of conventional medical doctrine. If the cream of the crop is refused, how does a general primary care physician get an article published? He doesn't… "Robert Good was at the top of his profession: President of Sloan-Kettering, father of modern immunology, and did the first bone marrow transplant in history. Yet, he couldn't get it published," Gonzalez says. "He couldn't even get a single case report published. In fact, I have a letter from one of the editors, dated 1987, who wrote a blistering letter to Good saying "You've been boondoggled by a crazy quack guy. Don't you see this is all a fraud?" It was just the most extraordinary, irrational letter... [Because] the patients' names were there, the copies of their pertinent medical records were there… Any of them could have called these patients, like Arlene Van Straten who, 29 years later, will talk to anyone… But no one cared. They wouldn't do it; they didn't believe it. They couldn't believe it. It was very disturbing to me because I say, "It is what it is." I come out of a very conventional research orientation, and it was astonishing to me—I had assistance; I had the president of Sloane-Kettering who couldn't get this thing published because it disagreed with the philosophy that was being promoted in medicine; that only chemotherapy, radiation, or immunotherapy can successfully treat cancer, even though the success rate was abysmal. The idea that medical journals are these objective and unbiased repositories of the truths about science is total nonsense. Most of them are owned by the drug companies. They won't publish anything that disagrees with their philosophy." By the end of 1987, it was clear that the work would never get published, and since Dr. Good had retired from Sloan-Kettering, they no longer had the power-base to conduct clinical trials. Dr. Kelley, realizing his work would never be accepted, let alone get published, "went off the deep end," in Dr. Gonzalez' words, and stopped seeing patients altogether. "When I last spoke to him in the summer of 1987, he accused me of being part of a CIA plot to steal his work, and I knew that I had to move on," Dr. Gonzalez says. "To this day, of course, I give him credit for his brilliant innovation. It's kind of like Semmelweis, who ended up going crazy during the 19th century after showing doctors should wash their hands before delivering babies and no one accepted that. Semmelweis just went off the deep end, and that's what kind of what happened to Kelley, I say with great sadness." Starting the Alternative Cancer Treatment Practice Dr. Gonzalez set up a practice in New York together with his associate, Dr. Linda Isaacs, and started seeing patients using Kelley's three-pronged approach. The results were impressive. One of his remarkable success stories includes a woman diagnosed with inflammatory breast cancer, which is the most aggressive form. She'd been given a death sentence. Today, over 23 years later, she's still alive and well, and cancer free. "Here's a woman that was given six months to a year to live AND developed metastases while getting aggressive multi-agent chemotherapy, yet 23 and a half years later, she's alive and well, enjoying her life and just doing so well. We could see that Kelley's approach really worked and when I report these cases I'm giving Kelley the credit because he developed this treatment," Dr. Gonzalez says. Recognition from the National Cancer Institute In 1993, as part of a legitimate effort to reach out to alternative practitioners, the National Cancer Institute (NCI) invited Dr. Gonzalez to present 25 of his cases in a closed-door, invitation-only session. On the basis of that presentation, the NCI suggested he conduct a pilot study with patients diagnosed with advanced pancreatic cancer, which in conventional medicine is known to be an untreatable, highly lethal form of cancer. Interestingly, Nestle stepped in to finance this pilot study. It may seem an odd choice, but the business motivation was the same then as it is today—making junk food appear healthier is a good business move, even if it's only in theory. Supervised directly by Dr. Ernst Wynder, a premier cancer researcher, the study was completed in early 1999 and published in June that year. According to Dr. Gonzalez: "It showed the best results for the treatment of pancreatic cancer in the history of medicine." Chemo Therapy vs. the Kelley Treatment To put his results in perspective, the chemo drug, Gemzar, approved for pancreatic cancer dates back to 1997, and the major study that led to its approval had 126 patients. Of those, 18 percent lived one year. Not a single patient out of the 126 lived beyond 19 months. Dr. Gonzalez' study had 11 participants, of which:
"My friends say "Why did you get involved with something like this? How could you trust the NCI?" Well, the NCI had been very fair, up to that point, and the then-director, Richard Klausner, in face-to-face meetings with him said he thought I was doing something really interesting and needed to be properly supported," Dr. Gonzalez says. But that goodwill soon disappeared. How to Sabotage a Clinical Study 101 About a year after the study was approved, Klausner left the NCI and was replaced by new management with a wholly different attitude. "[F]rom our first meeting, we knew something has changed significantly," Dr. Gonzalez says, "and all the people that had initially been assigned to the study, who were supportive and believed we were doing something useful, were taken off it. In fact one of them couldn't even talk to me. She said she'd be fired if she talked to me; if she took my phone call. I was told by another person who had supported me at the NIH that I shouldn't call him at his office; that he was afraid his line was tapped, and I should only call him at home. That's how insane the politics over this clinical study got. I couldn't believe it! I thought this was just something you'd read about or see on TV, or that some paranoid or crazy person would make up. But here I was living it. Coming out of Robert Good's group, I don't say that to impress people, but my background is so pure and conventional! It was unbelievable to see that the profession I respected and wanted to join could behave like this." Unfortunately, the study was, in the end, sabotaged. "Turned out the principal investigator at Columbia, who's supposed to be completely neutral, had helped develop a chemo regimen that was being used against us—a conflict of interest that was never declared," Dr. Gonzalez explains. "[T]here are specific requirements for entry into a clinical study. Ours is a nutritional program, and when the first protocol version was written, we had a list of specified criteria… They have to be able to eat…Ours is a nutritional program, so patients have to be able to eat. If they can't eat, they can't do the therapy. They have to be able to take care of themselves… This is a program the patients have to follow at home. … Initially, the patients could do it and responded to the treatment. Then, there was a sudden change, around 2000-2001, when the Columbia group took total control of the entry of patients in the study. We were excluded from that process, except during the initial months. The thinking was that if we were involved in the admission process, we'd enter the dreaded bias, whereas if conventional doctors were in control, they couldn't possibly be biased. Of course, the chief investigator helped develop the chemo regimen used in the study. That's virtually the definition of a 'potential bias'! He started sending us patients that couldn't eat. We had patients that were so sick we would never have accepted them into our private practice. That were so sick, they died before they got the treatment. Whether it was a trick to the protocol or not, the Columbia team, the NCI, and the NHI insisted that we had an "intent to treat provision into protocol". This means that the minute a patient is accepted into the trial, they're considered treated, even if they never do the therapy. So the chief of the study at Columbia would enter patients that were so sick, several died before they could pursue their treatment. But because of this intent to treat provision into protocol, they were considered treatment failures. Ultimately, 39 patients were entered for treatment. Maybe at best, being kind and optimistic, maybe five or six actually did it, the great majority were so sick they couldn't do it." As a result, the chemo treatment appeared to be a clear winner in this head-to-head evaluation of treatments against incurable pancreatic cancer. In 2006, Dr. Gonzalez and his partner filed a complaint with the Office of the Human Research Protection (OHRP), which is a group responsible for making sure federal-funded clinical trials are run properly. After a two-year investigation, the OHRP determined that 42 out of 62 patients had been admitted inappropriately. Unfortunately, this never made it to the media, and the Columbia team was able to publish the research findings without mentioning the results of the OHRP review. "So the study was a total boondoggle; a waste of $1.4 million," Dr. Gonzalez says. "Even though I won the grant, all the money went to Columbia. It's all gone. The data, as far as I'm concerned, is worthless, and the NIH and NCI are using it to show that my therapy doesn't work. So that's how this long journey of 30 years, from when I first met Kelley, has gone. "I tell people now regarding the National Center for Complementary and Alternative Medicine (NCCAM), I wouldn't send a dog to that group. They're not there to help you objectively investigate alternative therapies; they're there to undermine them. It gives the illusion that the government's interested in alternative therapies, when in fact that office is being used, as it was in my case, to help undermine promising useful alternative therapies." Gonzalez's Three-Pronged Approach to Cancer Treatment Although most of the studies done on this approach were done on pancreatic cancer, Dr. Gonzalez uses it to treat ALL cancers, from brain cancer to leukemia. His treatment, which is based on Kelley's work, consists of three protocols: diet, supplements and enzymes, and detoxification. The Dietary Protocol: The cornerstone of the treatment is a personalized diet based on your nutritional- or metabolic type. Dr. Kelley originally had 10 basic diets and 90 variations that ranged from pure vegetarian and raw food, to heavy-protein meals that included red meat three times a day. "In terms of diet, Kelley… found that patients diagnosed with the typical solid tumors: tumors of the breast, lungs, stomach, pancreas, liver, colon, uterus, ovaries, and prostate needed a more vegetarian diet," Dr. Gonzalez explains. "But he had all gradations of a vegetarian diet; one that was 80 percent raw, one that was 80 percent cooked. So even on the vegetarian side, there were all different variations. Some had minimal animal protein, some had fish, some had also red meat. A patient with immune cancer (leukemia, lymphoma, myeloma, and sarcomas,( which are connective tissue cancers that are related to immune cancers) tended to do best on a high-fat, high meat diet. … Then there are balanced people that do well with a variety of foods, both plant foods and animal products, but they don't tend to get cancer. Cancer tends to occur on the extremes, in the extreme vegetarians—those that tend to be too meat—or in the extreme meat eaters, who tend to be too alkaline. Balanced people don't tend to get cancer too much. So we continued the individualized approach, as did Kelley." Individualized Supplementation and Enzyme Protocol: The second component is an individualized supplement protocol, designed for your particular metabolism. "For example, our vegetarian patients need completely different supplements from our meat eaters. The vegetarians do very well with most of the B vitamins, while the meat eaters don't. The vegetarians don't do well with vitamin A, but the meat eaters do. The vegetarians do well with vitamin D; the meat eaters not so well with large doses, and so on," Dr. Gonzalez explains. "The meat eaters do well with calcium ascorbate as a vitamin C source, while the vegetarians do well with large doses of ascorbic acid. So the supplement protocols are very individualized and very precisely engineered." Omega-3 fats are also prescribed, but even here Dr. Gonzalez prescribes different types of omega-3's depending on the patient's nutritional type. In his experience, vegetarians, or carbohydrate types, tend to fare better on flaxseed oil, which contains alpha linoleic acid (ALA) – a plant-based omega 3. "It is thought that the conversion of the plant-based ALA into the fish-oil based eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) is not that efficient," he says, "But we find that our vegetarian patients actually do it very well and don't use the fish oil or animal-based omega-3 fatty acids as effectively." Chia and hemp seed oils can also be used. Protein types, on the other hand, appear to need the EPA and the DHA and do better on animal-based omega-3 such as krill oil. "They don't do well with flaxseed," he says. "Those are the people who can't make the conversion." In addition to vitamins, minerals and trace elements, he also prescribes large doses of pancreatic enzymes. "The essence of Kelley's work was based on the work of Dr. Beard, which goes back to the turn of the last century, about 110 years ago. Beard was a professor at the University of Edinburg, an embryologist actually, not a medical researcher, who first proposed that pancreatic proteolytic enzymes are the main defense against cancer in the body and are useful as a cancer treatment," he explains. When treating cancer, however, he found it's important to take the right ratio of active and inactive enzymes. The inactive precursors are particularly active against cancer. They also have far longer shelf life, and are more stable. "That would be my advice – get an enzyme that isn't completely activated," Dr. Gonzalez says. "More active isn't better when it comes to pancreatic enzymes, just like more and more D isn't better than getting the right dosage. You want the right proportions of activated and inactive—most of it as an inactive precursor." His proprietary enzyme formula is manufactured by NutriCology. According to Dr. Gonzalez, pancreatic enzymes are not only useful as treatment for active cancer but are also one of the best preventive measures. Antioxidants, such as astaxanthin, are also very helpful, both in the prevention and treatment of cancer. The Detoxification Protocol: The third component is a detoxification routine. Coffee enemas are used to help your liver and kidneys to mobilize and eliminate dead cancer cells that have been broken down by the pancreatic enzymes. Coffee enemas, although often scoffed at today, were actually used as part of conventional medicine all the way up to the 1960s, and were included in the Merck Manual, which was a handbook for conventional medical treatments into the 1970s. "They fell out of favor not because they didn't work, but because the drug industry took over medicine, so things like coffee enemas were kind of laughed at," Dr. Gonzalez says. "So Kelley learned about coffee enemas from conventional literature and incorporated them into his program and found them extremely helpful." When you drink coffee, it tends to suppress your liver function, but when taken rectally as an enema, the caffeine stimulates nerves in your lower bowels, which causes your liver to release toxins as a reflex. Other detox strategies include colon cleanses and liver flushes developed by Kelley. It's important to realize, however, that conventional coffee should NOT be used for enemas. The coffee MUST be organic, naturally caffeinated coffee, and were you to do this at home, you'd also want to use non-bleached filters to avoid introducing toxins into your colon. "[Organic coffee] is loaded with antioxidants," Dr. Gonzalez says. "In fact, there are recent studies showing that coffee loaded with antioxidants can have an anti-cancer effect and that coffee may actually help suppress cancer. But you have to use organic coffee, it has to have caffeine, and you have to use a coffee maker that doesn't have aluminum, and preferably no plastic." Dr. Gonzalez also relies on sodium alginate as a detoxifying agent. "We have a preparation that we put together and it's very effective... It's an algae and it chelates heavy metals and halides. I never use intravenous chelation; we just use sodium alginate." He recommends taking three capsules three times a day, away from meals, for six weeks to detoxify your body of heavy metals, such as mercury, and halides. Final Thoughts This is one of the most fascinating interviews I've ever done, and it is chock full of information—far more than I can summarize here. So please, I urge you to take the time to listen to the interview in its entirety. In addition to expounding on the subjects mentioned above, Dr. Gonzalez also reviews the benefits of optimizing vitamin D during cancer treatment, and how iodine supplementation can benefit breast cancer—not to mention help protect against thyroid cancer, in light of the current nuclear crisis in Japan. We discuss the benefits of juicing and chiropractic adjustments, and the importance of regular exercise for cancer patients. We also review the dangers of electromagnetic field (EMF) exposure, in terms of how it may aggravate cancer growth and hinder cancer recovery, and the benefits, along with some surprising precautions, of Earthing or grounding. For more information about Dr. Gonzalez and his practice, see www.dr-gonzalez.com. He's also working on a series of books, two of which have already been published and received five-star reviews: The Trophoblast and the Origins of Cancer, and One Man Alone: An Investigation of Nutrition, Cancer, and William Donald Kelley , which is the original monograph of Dr. Kelley's work that he couldn't get published 23 years ago. This written summary is only a small glimpse of the insights that were shared in our interview. If you or anyone you know struggles with cancer I would strongly encourage you to listen to the entire interview Thankfully Dr. Gonzalez is still on the front lines and actively engaged in helping people by helping coach them with natural alternatives to toxic drugs and radiation. His office is in Manhattan and he can be reached at 212-213-3337. Commonwealth Club 11-18-10. Panel II – Martin Blank, PhD from ElectromagneticHealth.org on Vimeo.
Dr. Martin Blank of Columbia University explains how the electromagnetic fields that emanate from your cell phone and other wireless devices affect your cells. Dr. Mercola's Comments: Nikola Tesla once said: "If you wish to understand the secrets of the Universe, think of energy, frequency, and vibration." Energy, frequencies, sounds, and vibrations are all around us, even if you can't hear them, see them or sense them in any way, and they can have a profound impact on your health. I've written a lot about the dangers of electromagnetic fields (EMF) in general, and cell phone radiation specifically, but appreciation for the critical importance of this science for humans as well as the environment is proving slow, with tremendous resistance from industries with potential liability. This will hopefully change in time, thanks to the likes of Martin Blank, PhD, who spoke at the November 18, 2010 Commonwealth Club of California program,"The Health Effects of Electromagnetic Fields", co-sponsred by ElectromagneticHealth.org. This event -the largest yet in the United States on EMF & health- was organized in association with the American Academy of Environmental Medicine, Citizens for Health, the EMF Safety Alliance, the Radiation Research Trust (U.K.) and the International EMF Alliance. I highly recommend you set aside 20 minutes to listen to Dr. Blank's speech in the video. Dr. Blank speaks with deep experience and commanding authority on the impact on cells and DNA from electromagnetic fields, and explains why your DNA is especially vulnerable to electromagnetic fields compared to other tissues. Health-concerned citizens should hear this information and then urge each of your representatives in Congress to view this video as well. It is only when elected officials understand the gravity of the science and the implications for health and the future of the species that steps will be taken to protect public health. Who is Martin Blank, PhD? Dr. Blank, past president of the Bioelectromagnetics Society, has an impressive resume backing up his statements on this topic. He has two PhD's, one from Columbia University in Physical Chemistry, and another from Cambridge University in Colloid Science (biology, physics and chemistry). He's an Associate Professor at Columbia University in the department of physiology and cellular biophysics, and a researcher in bioelectromagnetics. He authoured the section on stress proteins for the Bioinitiative Report, and edited the journal Pathophysiology's special issue on the biological effects of electromagnetic fields. In this talk, Dr. Blank explains the science of EMF: how electromagnetic frequencies impact your cells and DNA. On exposure to electromagnetic fields, he explains, cells respond as if they are in distress. We see this through the cellular stress response. This truly is crucial information, because I'm sure you've heard more than a few people reiterate the now tired, scientifically disproven, and incorrect statement that "non-thermal radiation cannot produce a biological effect." Dr. Blank lays this and other inaccuracies to rest here with compelling and credible evidence. There are a lot of bona fide scientists speaking about this topic, Dr. Blank says, but many of them are speaking without having the prerequisite expertise within the field. This is important. Being a "scientist" is not enough here. Physicists in particular are often introduced as 'experts' to defend the status quo of EMF's being completely harmless (unless there is enough power to heat tissue), but as Dr. Blank warns, "the fact of the matter is they have not read the literature." The Science is Clear: Non-Thermal Radiation DOES Cause Biological Harm Dr. Blank is adamant when he says that there IS evidence of harm, and that the harm can be significant. He also points out that the science showing harmful effects has been peer-reviewed, published, and that the results have been replicated, evaluated and "judged by scientists capable of judging it." Most importantly, researchers now have a fair understanding of the actual mechanisms causing the damage, which I will summarize below. The Spectrum of Frequencies that Surround You When looking at a spectrum chart of frequencies, you'll find that cell phones operate in the middle of the spectrum, in the microwave range, which is a subset of the radiofrequency band. Below microwaves are lower frequency radio frequencies, and at the bottom of the spectrum you have 'extremely low' frequencies known as ELF, which include frequencies from electrical wiring and household appliances, for example. All of these frequencies are within the non-ionizing radiation range, which means they don't have enough heating effect, or power, to separate electrons from atoms. Above that, you enter the ionizing frequency range, which include ultraviolet (UV) rays, gamma rays and x-rays. Some of these frequencies exist in nature while others, such as telecommunications frequencies, are man-made and not something our bodies are adapted to, nor expected to ever adapt to. Just one of the many reasons why we need to thoroughly investigate the biological repercussions of broadcasting a range of these frequencies is that technologies keep transmitting more and denser content, such as audio, video, data, etc., which can create significant biological disruption due to modulation of the signals. Also, higher and higher frequencies are being used, ostensibly because more information can be transmitted at these higher frequencies. While various high frequencies are biologically disruptive, understand that the very low ELF frequencies can also be similarly harmful, such as electric and magnetic fields. One is not better or worse than the other, necessarily, but it is the cumulative load of these exposures and the chronic duration of the exposures that we need to become cognizant of and protect ourselves against. And as we'll see below, DNA is reactive across the entire spectrum. It's quite clear and non-controversial that ionizing radiation causes significant damage to the human body, including cancer, but certain physicists are simply wrong when they claim you cannot get any kind of biological reaction as long as you stay within the non-ionizing range of frequencies. These physicists are thinking about what they know well—heating effects on matter—but it's clear they need to start spending time with the biologists! And they should certainly not be opining on this subject until they have read the science on the biological effects of EMF at non-thermal exposures. It's true that there's an insufficient amount of energy to dislodge an electron, "but boy, you can get a lot of biological reactions in the non-ionizing range!" Dr. Blank says. "And they have been published and repeated so we know that you can get biological reactions in the non-ionizing range." How EMF's Cause Cellular Stress Responses and Biological Damage DNA, as you probably know, is a molecule that contains genetic information. However, this genetic information does more than simply pass traits down to future generations. In fact, this genetic information is constantly being accessed to maintain optimal functioning within your body, in response to your environment. As Dr. Blank explains, your DNA "is constantly at work, making proteins required for the business of life." The ladder-like structures that make up the double helix of your DNA represent the chemicals that tie the two strands together. These structures contain the genetic code, and the sequence of the bases tells you what kind of molecule is required for building protein needed. Some of these proteins are created in response to stress in what's known as the cellular stress response. You may be familiar with the stress response in your body, in which cortisol and adrenaline is produced, for example. But each and every one of your cells has a similar defense mechanism against stress as well. According to Dr. Blank, there are about 20 different stress proteins in nature, called heat shock proteins (HSP), which are used by your cells to counteract harmful stimulus. Whenever a cell is exposed to an unfriendly environment, the DNA separates in certain regions and begins to read the genetic code to produce these stress proteins (HSP). Therefore, the presence of stress proteins is an indication that the cell has come into contact with something that is detrimental to its wellbeing. Essentially, it's your cells' way of saying, "I've encountered something bad." And, Dr. Blank emphatically claims, "There's no question cells react to EMF's as harmful." Research has clearly shown that radiation within the non-ionizing range can cause single- and/or double-DNA-strand breaks, which cells respond to by creating stress proteins. Interestingly, researchers have discovered that your cells do not only react to frequencies in the microwave range, but across the ENTIRE SPECTRUM of frequencies, from low ELF's and up! Your DNA Acts as a Fractal Antenna Dr. Blank compares your DNA to what electrical engineers refer to as a 'fractal antenna.' A fractal antenna is an antenna that can pick up a range of frequencies across the EMF spectrum. Two additional features of your DNA that fulfill the requirements of a fractal antenna are that electrons in DNA conduct electricity, and the fact that the DNA is coiled within the nucleus. In the video, Dr. Blank shows a slide listing the diameter sizes of the coils within the DNA molecule: • Double helix = 1 nm • Chromatin fiber = 10 nm • Solenoid = 30 nm • Hollow tube = 200 nm Each of these different coil sizes respond to a frequency on the EMF spectrum, which explains why your DNA responds to such a wide range of frequencies. In a nutshell, the human body is constructed with a fractal antenna inside each and every cell, which responds to the entire range of frequencies on the EMF spectrum! What this means is that it would be foolish to focus on just one frequency, because we are bombarded with ALL of these frequencies, from low ELF's to microwaves, to ionizing radiation. "And you never know which frequency will do the most damage," Dr. Blank warns. DNA Responsible for EMF Response has Been Identified In the video, Dr. Blank explains that they have now identified the DNA that controls the response to electromagnetic fields. They did this by taking the piece of the DNA molecule responsible for stimulating one specific stress protein (out of the 20 stress proteins produced). This particular stress protein is called HSP70. The long line you see in the screenshot below from Dr. Blank's presentation at the Commonwealth Club is a symbolic representation of the different parts of the DNA that are part of the promoter—this is the part of the DNA that gets activated to start the synthesis process. In his presentation, Dr. Blank explains that the red rectangles are particular configurations of bases (CT-CT). They found that the section known as the EMF domain (shown here as the large red rectangle), controls the response to EMF's. And, by changing that part of the DNA, they were able to effectively eliminate the EMF response. (Source: Slide from Martin Blank's presentation at the Commonwealth Club of California, November 18, 2010.) In addition, a plausible EMF mechanism has also been identified and published in the Journal of Cell Physiology, back in 2008. (Other mechanisms of effect have been complied and recently published in the European Journal of Oncology in collaboration with ICEMS, and the Ramazzini Institute. The report, called "Non-Thermal Effects and Mechanisms of Interaction Between Electromagnetic Fields and Living Matter", can be downloaded at www.ElectromagenticHealth.org.) In short, when you charge a molecule, you can cause that molecule to break apart. For example, researchers have shown that a hemoglobin molecule can be made to break apart by increasing the charge on the molecule. The reason why the DNA molecule can be made to break apart even though the radiation is non-ionizing is because of the electrical conductivity inside the DNA molecule, i.e. the electrons present in the DNA bases can be made to move. And, EMF's have been shown to cause electron transfer in the DNA.So, the idea that non-ionizing radiation cannot create a biological effect has been shown to be completely inaccurate. Health Hazards Linked to Cell Phone Use Scientists have found that microwaves transmitted by cell phones and other wireless devices can:
There's also a strong link between EMF exposure and cancer. A review of 11 long-term epidemiologic studies published in the journal Surgical Neurology two years ago revealed that using a cell phone for 10 or more years approximately doubles the risk of being diagnosed with a brain tumor on the same side of the head where the cell phone is typically held. Professor Mild, lead researcher of that particular study, also cautioned that the danger may be even greater than what they found because cancers need a minimum of 10 years to develop. Since children today are using cell phones at an earlier age than any previous generation, their exposure will be far greater over their lifetimes. Because children have thinner skulls than adults, and their nervous systems are still developing, children are particularly vulnerable to this type of tumor and should not use cell phones at all. Australia has seen an increase in pediatric brain cancers of 21 percent in just one decade. This is consistent with studies showing a 40 percent brain tumor increase across the board in Europe and the U.K. over the last 20 years. Brain cancer has now surpassed leukemia as the number one cancer killer in children.The BioInitiative Report also includes studies showing evidence for exposure to electromagnetic fields brain tumors, acoustic neuromas, and childhood cancers like leukemia. Steps You Can Take to Protect Yourself and Your Family In the end, all the evidence points to the fact that our current safety standards are completely inadequate. Our rapidly expanding wireless technologies must be properly evaluated, first of all, and the precautionary principle must be invoked when new technologies emerge. While you can't completely avoid radiation in today's wireless world, if you're ready to give up your cell phone, you can virtually eliminate that one hazard, at least. If you're not prepared to take that step, you can minimize your exposure by heeding the following advice:
Alternatively you can be very careful with the base station placement as that causes the bulk of the problem since it transmits signals 24/7, even when you aren't talking. So if you can keep the base station at least three rooms away from where you spend most of your time, and especially your bedroom, they may not be as damaging to your health. Ideally it would be helpful to turn off your base station every night before you go to bed. You can find RF meters at www.emfsafetystore.com. But you can pretty much be sure your portable phone is a problem if the technology is DECT, or digitally enhanced cordless technology.
You're bathed in a wide range of frequencies every day, so please, at least take the above precautions to reduce your risk, and the risk to your children, who are even more vulnerable to long-term damage. Dr. Blank ended his remarks emphasizing people must get involved in raising awareness. "... probably the most important part is the public education campaign. That is, people must be made aware of this issue. They must realize that even though they cannot see EMF or feel it, it's having its effect and that these effects are cumulative, many are slow-acting, and that you really can't beat it." February 23, 2011
Analysis of the PLoS ONE paper via the CFIDS Association of America Today, February 23, 2011, in the online journal PLoS ONE, researchers from six institutions published a tantalizing study that uses powerful discovery technology to catalogue proteins in chronic fatigue syndrome (CFS) and neurologic post-treatment Lyme disease (nPTLS) spinal fluid samples. The exciting work is the product of a large team led by Steven Schutzer at the University of Medicine and Dentistry of New Jersey and Thomas Angel and Tao Liu of the Pacific Northwest National Laboratory. In an article titled, “Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease and CFS,” Schutzer and colleagues tested samples collected by lumbar puncture from 43 CFS subjects carefully evaluated using 1994 Fukuda criteria, 25 subjects who met CDC surveillance criteria for Lyme disease and who had completed at least three weeks of intravenous antibiotic therapy at least four months earlier, and 11 healthy controls. The disease comparison groups were chosen because of the overlap of central nervous system (CNS)-related symptoms and lack of medical explanation for either CFS or nPTLS. They write, “Specific abnormalities found in cerebrospinal fluid (CSF) relating to CFS and nPTLS would suggest CNS involvement, and could facilitate mechanistic understanding.” The investigators combined two powerful technologies called mass spectroscopy and liquid chromatography to analyze the CSF samples. Mass spectroscopy is a tool that measures the mass of particles and thus the composition of a sample. Liquid chromatography measures the relative proportions of particles in a mixture. This combination of methods was chosen for its ability to cast a wide “discovery” net in the analysis of complex biological specimens, without having to define in advance what proteins might be present. The group recently established a comprehensive normal “proteome” as a baseline for comparison to disease samples. The term proteome refers to the entire set of proteins found in a biological sample; in this case, cerebrospinal fluid. Proteins are made up of smaller particles called peptides. Using these tests the team was able to generate a comprehensive list of 30,000 peptides in the samples pooled from subjects in each disease group. Of these 30,000 peptides, 738 proteins were found only in CFS subjects (Figure 1). The nPTLS samples had 692 unique proteins and the normal controls had 724 unique proteins. Differences in the amounts of various proteins were detected between groups and CFS and nPTLS had more proteins in common than with the healthy controls. Looking at the biological pathways implicated by the different proteins identified, the team found that proteins in the complement cascade were elevated in abundance in the pooled nPTLS and CFS samples compared to controls, but at different levels for the disease groups. The complement system is a part of the immune system that helps to clear infectious pathogens. Interestingly, in a 2005 proteomics study conducted by James N. Baraniuk and published in BMC Neurology, the complement system proteins were also found in cerebrospinal fluid from CFS patients and differentiated CFS patients from healthy controls. Alterations in the complement cascade pathways have been a relatively consistent abnormality in CFS patients (Sorensen B, et al., 2003 and 2009). This convergence of data implicates biomarkers and pathways that should be prioritized for verification and validation. Proteins involved in the CDK5 signaling pathway were significantly enriched in the CFS samples. Alterations in the CDK5 signaling pathway have been linked to Parkinson’s disease and Alzheimer’s disease. Proteins relevant to specific neurological functions were lower in CFS than nPTLS, and both disease groups had lower levels than the healthy controls. The authors recognized that the clinical significance of the proteins and protein levels identified in the sample groups is “difficult to determine in the discovery phase.” They also examined individual CSF samples (rather than pooled samples) from CFS and nPTLS subjects. In doing so, they identified a set of proteins that distinguished the two disease states (Figure 2A and 2B). By analyzing individual CSF samples, they determined that nPTLS patients are distinct from CFS patients. The ability to distinguish CFS and nPTLS on the basis of these proteins has important diagnostic implications. Because the etiologic agent for Lyme disease is known to be Borrelia burgdorferi, this finding suggests distinct pathophysiologies for these two clinically similar diseases. It also suggests different treatment approaches may be warranted. Some have proposed that nPTLS represents a subset of CFS; however, the authors of this paper conclude that their data does not support that concept. In the final discussion section, the authors state, “CSF proteome analysis may provide important and meaningful insights into the biological processes modulated as a function of disease and facilitate the identification of protein candidates for further investigation...Distinguishing CFS and nPTLS will have etiologic implications which could lead to novel diagnostics and therapeutic interventions.” They suggest that by uncovering these candidates in cerebrospinal fluid, a targeted search in blood for these proteins is now possible. This team of researchers provided the comprehensive list of proteins they identified as part of the open access paper. This will enable these and other investigators to explore and interrogate the data further. This list of proteins can immediately be put in the context of other findings in the CFS literature using cutting-edge computational and text mining tools. It could rapidly accelerate the identification of the most promising proteins and pathways for generating objective diagnostic assays and targeted treatments. The Association’s scientific director, Suzanne D. Vernon, PhD, notes, “I am particularly excited about this study and the new avenues it opens. Pairing this treasure trove list of proteins with the biological and clinical resources in the Association’s SolveCFS BioBank will quicken the pace at which these biomarkers can be verified and validated, hopefully shortening the pipeline from benchside discovery to bedside application. The contributions made by this group to understanding the biology of CFS and nPTLS could not have come at a more timely moment for the field and the patient community.” The firestorm generated by last week’s publication of the U.K.’s injurious PACE Trial and uncertainty about the role of XMRV/MLVs in CFS have taken a toll on patients, advocates and researchers alike. The study is a model for partnership across multiple institutions and funding agencies. It was supported by the National Institutes of Health (National Institute of Allergy and Infectious Diseases, National Institute on Drug Abuse, National Institute of Neurologic Diseases and Stroke and the National Center for Research Resources), the Swedish Research Council, Uppsala Berzelii Technology Center for Neurodiagnostics, SciLifeLab-Uppsala, Time for Lyme, Lyme Disease Association and the Tami Fund. The Pacific Northwest National Laboratory is a national scientific user facility sponsored by the Department of Energy. CFS patients were identified and evaluated by Benjamin Natelson at Albert Einstein School of Medicine. Lyme patients were identified and evaluated by Brian Fallon at Columbia University. Jonas Berquist of Uppsala University in Sweden assisted with data analysis. The collaborative effort, use of new technologies for discovery and willingness to openly share data to advance the field represent an inspiring 21st century research initiative worthy of high hopes. The CFIDS Association of America is committed to advancing research that leads to the early detection, objective diagnosis and effective treatment of CFS. The scientific and medical communities are obligated to understand the biological roots of CFS so that targeted and effective treatments can be made available to the millions of people around the world whose lives have been derailed by CFS. References: Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, Adkins NJ, Camp DG, Holland BK, Bergquist J, Coyle PK, Smith RD, Fallon BA, Natelson BH. (2011) Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287 Baraniuk JN, Casado B, Maibach H, Clauw DJ, Pannell LK, Hess S. (2005) A chronic fatigue syndrome - related proteome in human cerebrospinal fluid. BMC Neurology 2005, 5:22doi:10.1186/1471-2377-5-22 Sorensen B, Streib JE, Strand M, Make B, Giclas PC, Fleshner M, Jones JF. Complement activation in a model of chronic fatigue syndrome. Journal of Allergy and Clinical Immunology. 2003 Aug;112(2):397- 403. Sorensen B, Jones JF, Vernon SD, Rajeevan MS. Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome. Molecular Medicine. 2009 Jan-Feb;15(1-2):34-42. People die from ME/CFS, but not from states of chronic “fatigue” or “CFS/ME” as defined by the Wessely School.
On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28-30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness. In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he was also a Nobel Prize nominee) stated that there is “a greater death rate than normals in the same age range” (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644). This was corroborated 14 years later by Professor Leonard Jason et al, who found that the three most prevalent causes of death in ME/CFS patients were heart failure, suicide and cancer and that the age of death is considerably younger than in the general population (Health Care Women Int 2006:27(2):615-626). Perhaps the most tragic and well-known death from ME/CFS is that of Alison Hunter from Australia, who died in 1996 and whose death certificate stated the cause of death as “Severe progressive ME”. She was just 19 years old. The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel. James Ibister, Head of Haematology at Royal North Shore Hospital, Sydney, said: “To be honest, I felt helpless towards the end. On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me”. Alison, he said, suffered “terrible physical distress compounded by insults and inhumanity” (www.ahmf.org). In 1998, an ME/CFS sufferer wrote: “I’ve had ME for nearly five years, 18 months of which were a living hell. The physical suffering (inability to walk unaided, chew, swallow, breathe properly, hold my head up, hands which became spastic) was bad enough, but the brain symptoms were at times unbearable – my brain exploding with stimulus until I thought I’d gone mad (and) the room spun like I was drunk, making me feel physically sick. The bed felt like it was moving. I had explosions of light before my eyes. Worst of all were the ‘seizures’, which felt like I was having a stroke – pins and needles on my head and face, drooping muscles around my mouth, my head would start to tip backwards, absolutely terrifying. I live alone, yet have been refused home care, disability living allowance or any form of medical advice. The public need to be shocked by seeing the severely affected, those being tube fed, shaking, uncontrollable, paralysis, unable to hold up their head, speak, see, control bowel movements. The myth that ME is never fatal must be dismissed. I know of several people who have died of the complications ME can bring” (Perspectives, September 1998:26). UK Coroners are now providing incontrovertible evidence that ME/CFS can lead to death. This is something that the ME/CFS community has known for many years. The UK authorities keep no statistics, so the actual number of deaths from ME/CFS remains unknown. In 1992, a 30 year old woman in the UK who had suffered from ME/CFS for five years committed suicide; the post-mortem study (using polymerase chain reaction) showed enteroviral sequences in samples from her muscle, heart, the hypothalamus and the brain stem. No enteroviral sequences were detected in any of the control tissues. The researchers stated: “The findings further support the possibility that hypothalamic dysfunction exists in the pathogenesis of (ME)CFS (and) they suggest that the chronic fatigue syndrome may be mediated by enterovirus infection and that persistent symptoms may reflect persistence in affected organs” (McGarry et al. Ann Intern Med: 1994:120:11: 972-3). On 18th June 1995, Consultant Radiologist Dr Eric Booth died from ME/CFS aged 48 years, having had ME/CFS for 16 years. Four years before he died, Booth wrote: “I have been very seriously ill for the last five years, being totally bedridden (but) am unable to convey this to my medical colleagues. I have come to believe that physicians suffer from compassion fatigue” (BMJ 28 October 1995:311). The autopsy findings were disturbing but were suppressed; Booth’s next of kin was warned by the Official Solicitor that action would be taken against her if she divulged the post-mortem findings, to the extent that she was reduced to a state of chronic fear. In 1998, there was the well-reported case of Joanna Butler, a young woman aged 24 from Leamington Spa, Warwickshire, who was severely affected by and died from ME/CFS. She was nursed at home by her parents and was bed-bound for the last two years of her life and required tube-feeding. Although she died of ME/CFS, her parents were suspected of having caused her death by administering too high a dose of a medically-prescribed morphine-related compound, and the local paper (Courier) reported that the Warwickshire County Coroner (Michael Coker) ordered a police investigation. This investigation cleared them of blame but they were hounded to such an extent that they were forced to move away from the area (see the press reports in The Observer, 19th March 1998: “Tragic death of young ME victim” and the reports in the local paper, including the Courier, which carried a report on the ‘many who die each year’ of ME). In January 2003 the wife of Richard Senior died of ME/CFS; the North Wales Coroner entered CFS as the cause of death on the death certificate. On 4th July 2005 Casey Fero died of ME/CFS at the age of 23 in the US. The autopsy showed viral infection of the heart muscle. The pathologist was shocked at the state of Casey’s heart, which showed fibrosis indicating the presence of a long-standing infection. In November 2005 Sophia Mirza died of ME/CFS in the UK and the death certificate of 19th June 2006 gives CFS as the cause of death, with acute renal failure. Another UK death from ME/CFS occurred in May 2008 when a severely affected and courageous woman died in the North of England; her death certificate gives “Myalgic encephalomyelitis” as the cause of death. Evidence from autopsies of people who have died from ME/CFS is chilling. In Sophia Mirza’s case (a 32 year old woman sectioned by psychiatrists who alleged that she was suffering from a mental disorder so she was kept in a locked ward and, according to her mother’s evidence, denied basic care), there was evidence of severe inflammation throughout 75% of her spinal cord. This was one of three such autopsies spoken about by Dr Abhijit Chaudhuri at the Royal Society of Medicine meeting on 11th July 2009 (see below). A 2005 autopsy in the US showed oedema of the lower limbs; the alveolar spaces of the lungs were filled with inflammatory cells and there were small emboli scattered throughout the arteries; there was marked congestion of the liver and spleen; the bowel was ischaemic; there was mild inflammation of the kidneys; there was also evidence of rhabdomyolysis (the breakdown of muscle fibres resulting in the release of muscle fibre contents into the circulation, some of which are toxic to the kidney); the bladder showed a hyperplastic epithelium; the thyroid showed colloid filled follicles, with scattered dystrophic calcifications and calcification of the small arterial walls; the right occipital lobe of the brain showed areas of degeneration and degenerated astrocytes, and the white matter surrounding this defect appeared puckered. The Medical Director of The National CFIDS Foundation (chronic fatigue immune dysfunction, a commonly-used US term for ME/CFS), Dr Alan Cocchetto, commented: “Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients” (http://www.ncf-net.org/forum/Autopsy.htm). The Wessely School, however, including the three PACE Trial Principal Investigators and the Director of the Clinical Trial Unit, continue to believe that ME/CFS is an “aberrant illness belief” and they assume that all patients – including those with ME/CFS -- suffering from what they deem to be “medically unexplained symptoms” (which they refer to as MUS) or from “medically unexplained physical symptoms” (which they refer to as MUPS) are really suffering from the same mental illness, ie. somatisation, and as such their symptoms will never be medically explained, therefore there is no point in wasting health service resources in seeking a biomedical explanation. The Wessely School claim that they are reacting against Cartesian dualism – the long-held belief in Western medicine that an illness is either “organic” or “psychiatric”. However, as Dr Mary Schweitzer (a US ME/CFS sufferer and patient advocate) points out, the Wessely School has simply turned Cartesian dualism on its head. Disorders such as schizophrenia used to be regarded as “mental”, but advances in understanding now show that the psychiatric disturbances that present in schizophrenia are manifestations of underlying organic pathology. In their own interpretation, the Wessely School has reversed this in relation to ME/CFS, claiming that the physical is psychological which hardly accords with 21st century medicine (http://www.hhs.gov/advcomcfs/meetings/presentations/schweitzer_0509.pdf ). For sample pages of the report go to http://bit.ly/i9GSD6
WEBSITE: http://www.patient-view.com A 400-page report, What do patients think of doctors ?, published in early-March 2011 by UK research organization PatientView, finds that over half (53%) of the 2,500 respondent patient groups think patients believe doctors are standing in the way of their receipt of the correct diagnosis, treatment and and/or support—and are making patients ‘fight the system’ to obtain the care they need. The situation is at its worst in five countries—Canada, Germany, Italy, New Zealand and the UK—where 60% or more of patient groups say that health professionals need to improve their relationships with patients by not making patients fight the system for their medical needs. 70% of patient groups representing the interests of patients with gastrointestinal problems, 60% representing the interests of patients with multiple sclerosis, and 60% rare diseases, feel that health professionals need to stop forcing patients to ‘fight the system’ to get the care they need. Poor doctor-patient relationships have a negative effect on patient health. ‘What do patients think of doctors?’ focuses on the current state of doctor-patient relationships, and offers numerous insights into how they can be improved. The report finds that less than a third of groups representing patients believe GPs and consultants remain traditional and patriarchal in their attitudes to patients. On the other hand, only 15% believe that doctors treat patients as equals (and act on that belief)—the rest believe that the situation varies from doctor to doctor, or that doctors may intend to take a partnering role, but fail to live up to it. Relationships between doctors and patients are undoubtedly in need of considerable improvement, especially in some of the less well-performing countries [see charts in sample pages at web-link above]. The state of doctor-patient relations has an important bearing on how well patients respond to treatment. In the report, patient groups are quoted as saying that poor doctor-patient relationships prevent patients from coming forward for medical treatment and care—even when treatment and care is needed. Doctors need to listen more to the patient When asked what single intervention would most improve doctor-patient relationships, the groups cite “enhancing the communication-and-understanding skills of the healthcare professional” as their main choice, second only to “the provision of treatment and care that improves quality of life”. In Australia, Italy, New Zealand and the UK, improving doctors’ communication-and-understanding skills is ranked first, as the most important way of improving doctor-patient relations. Groups representing the interests of patients with cancer and HIV/AIDS also see such a development as the favoured way of improving doctor-patient relations among the patients in their disease specialties. About the survey ‘What do patients think of doctors?’ is based on the results of a November 2010 PatientView survey of 2,500 patient groups from around the world. The survey asked the respondent groups what they think of current doctor-patient relationships, and how they believe those relationships might be improved. The report covers most subject areas in which patients would like doctor-patient relations to be improved, including:
Doctor-patient relations are also analyzed for the following 12 specialties: cancer [160]; diabetes [55]; gastrointestinal [40]; heart and circulatory conditions [70]; HIV/AIDS [72]; mental health [170]; multiple sclerosis [35]; neurological [195]; Parkinson’s disease [30]; rare diseases [70]; respiratory [35]; and rheumatological conditions Lydia E. Neilson, M.S.M., Founder and Chief Executive Officer NATIONAL ME/FM ACTION NETWORK 512 - 33 Banner Road Nepean, ON K2H 8V7 Canada Tel. 613.829.6667 Fax 613.829.8518 Email: [email protected] www.mefmaction.net April 18, 2011
Thanks to Matthew Smith for his guest post, who blogs at samedifference as Indigo Jo. One Last Goodbye is Kay Gilderdale’s account of her life with her daughter Lynn, who suffered from very severe ME from mid-1992 (after initially falling ill in November 1991) until her death in December 2008. ME has been described by Leonard Jason, an American doctor who suffers (more mildly) from the condition, known in that country as Chronic Fatigue Syndrome, as “more debilitating than just about any other medical problem in the world”, and Lynn had one of the worst ever cases of it. For all but the first few months of her illness, she was totally bedridden, unable to speak or swallow, in constant, terrible pain, and experienced what she described as “permanent nausea/vomiting” along with numerous complications including adrenal and ovarian failure; in her last couple of years, hardly any part of her body was unaffected. After a prologue describing waiting for the verdict in her trial in January 2010, Kay moves to describing, in two chapters, her upbringing in Dublin, where her father was a successful businessman although he fell on hard times around the time of the author’s birth, and where her elder brother sustained an injury in a car accident, leading to brain damage and lifelong disability. As a trainee nurse in London, she met and fell in love with Richard Gilderdale, a policeman; the two married and moved to East Sussex, with her husband becoming a village policeman and the couple settling in Stonegate. Lynn was born in September 1977; they named her Lynette, but she later insisted on being called Lynn. Kay describes her as well-motivated, sporty, fond of music but not in an academic sense, and fun-loving, and notes that she took it for granted that she would get married and have children. When she became ill after her BCG vaccination in 1991, it initially seemed like any other bug, but her condition took in repeated infections that “seemed to have total and free access to her body”. She began to be sensitive to light and sound, and when her mother took her shopping before Christmas, naively imagining that “she could override [Lynn's] noise and light sensitivity with a spot of retail therapy”, Lynn begged to be taken home. She began falling over at home, having spasms and fits, and increasingly lost her memory, not knowing what things were or who people were. When the Gilderdales sought help, they encountered hostility from everyone except their local GP, Dr Jane Woodgate. A consultant at Kent and Sussex Hospital in Tunbridge Wells angrily demanded to know why Lynn had missed so much school; the paediatrician Lynn was referred to diagnosed her with ME, saying he had seen many young people like her and they all got better; he told her she was lucky to have a “fashionable” disease. When Lynn was almost at rock bottom and could no longer swallow, they got her admitted to a clinic in north London that supposedly specialised in ME, but at which she encountered terrible cruelty (she later alleged that she had been sexually assaulted there, although this book does not mention that). A consultant performed a “psychological experiment” by putting Lynn in a dark room with heavy curtains and removing her clock, and finding himself unable to explain the severity of Lynn’s condition, he referred her to a psychiatrist. In her next hospital, Lynn overheard nurses talking about her and saying that her father had “obviously” sexually abused her, while in a psychiatric unit at Guy’s Hospital in London, she was put in a windowless room where children were able to throw things at her. By the end of her time there, she had lost the ability to speak. At every point, the Gilderdales were lied to, assured that the doctors regarded ME as a physical illness rather than a mental one and that they had a treatment plan, but the plans never materialised and it rapidly appeared that they did not in fact accept that her illness was physical. Time after time, Kay and Richard Gilderdale had to intervene when Lynn was put into unsuitable accommodation (such as a room with building works outside) or treated cruelly or disrespectfully; if it were not for their daily visits, her situation could have been even worse than it was. During a later admission, one doctor frankly told Kay Gilderdale that “ME does not exist”, and that Lynn’s condition was “Lynn Gilderdale syndrome”. It was clear that none of them had ever seen a case of ME that severe before, and did not recognise it as the same thing even if they could see that Lynn was dreadfully ill. From my admittedly limited research, it seems as if there was a rash of cases of severe ME in adolescent girls dating from that time, and all the victims are still severely affected, but nobody knew that in 1992. The book Osler’s Web by Hillary Johnson, which tells the story of ME in the USA in the 1980s and early 1990s, mentions no case anything like it. Still, that does not excuse the outrageous cruelty they subjected Lynn to, nor the contemptuous attitude they displayed when they failed to identify Lynn’s illness with their tests, particularly as subsequent tests showed very serious abnormalities, as has been the case for many other sufferers. Lynn’s illness was shocking in its severity, even compared to most of the other well-known severe cases (except, perhaps, Sophia Mirza). Fellow sufferer Vikki George (known for founding the charity Post Pals, which arranges for gifts to be sent to sick children, which she runs from her bed in a dark room in Bookham, Surrey), said in an appearance on ITV Meridian news last year that her case was “certainly the worst for the longest period”. What was most distinctive about it is the level of physical disability it visited on her which was seemingly permanent; she was effectively paraplegic, unable to feel or move her legs, unable to speak or swallow, and entirely bedridden, unable even to raise her head, consistently from mid-1992 until her death. It is quite common for people with severe ME to temporarily lose their speech, or to be tube-fed because of difficulties swallowing or severe nausea which means they cannot bring themselves to eat, but losing these faculties for so long is quite unusual, and raises the possibility of whether she would ever have regained them if her general condition had improved. Normally, a bedridden ME sufferer can get on a commode or make it to the toilet and back; Lynn would pass out if someone raised her. Her ordeal in hospital in 1992 was not to be her last; over the years, she would suffer a punctured lung, resulting in needing life support, be accused of inducing a skin rash that actually originated with her cat (while in hospital for treatment for an adverse reaction to her liquid feed), have her back broken while being lifted, was awake during an operation to fit a PEG tube (that is not in this book, but you can read Lynn’s account of it here: http://chronic-health.livejournal.com/305565.html, towards the bottom of the page), and be made to stay on an open ward during her final stay, during which she contracted four separate bugs which persisted after her discharge. Small wonder that she decided never to be admitted again, whatever the circumstances. From about 2004 onwards, Lynn’s memory and cognitive abilities began to improve, and judging by this book they improved very rapidly; unless the chronology is a bit out (and it does say that Lynn missed the fall of the Berlin Wall and Nelson Mandela’s release, which happened before Lynn fell ill, in 1989 and 1990 respectively), Lynn first recognised a written word aged 27, the age she reached in September 2004; her early online communications were assisted by Kay, to whom she signed what she wanted to write, and she then wrote them down so that Lynn could type them. Eventually, she was able to type unaided and made Kay promise that she would not read her diaries, a promise Kay kept even after her death. With the exception of the famous “DNR” posting from 2008 which has previously appeared in the press and which was read out in court, this book contains no material sourced from Lynn’s private blogs. Curiously, the name Jessie Oliver, which Lynn adopted for her online activities, never appears in the book. Unsurprisingly, the last third, or so, of this book deals with the events which come after the punctured lung incident in October 2005. After that ordeal, Lynn began to lose hope in ever getting better, increasingly insisting that she was “too broken”. She drew up an advanced directive (i.e. a living will), which specified that she was not to be treated for anything that left her unconscious, although if she was suffering and conscious, she did want to be treated. “If I get a nasty lump (wots that ilnes kalled), I do NOT wont treatment 4 this,” she wrote. Most adamantly, “NO 1 SHOULD BE ABLE 2 PUT ME IN A MENTAL HOME”. Kay was quite surprised by discovering Lynn’s final suicide attempt; Lynn had promised not to attempt suicide behind her parents’ backs again after an earlier attempt and had been making plans for Christmas, but insisted that she could not go on another day. Kay notes that Lynn’s demeanour in her last few months had generally been happy (in between bouts of sickness and hours on the bed-pan), and that she had continued talking to her friends online and listening to music; this is not unusual in people who have resolved to kill themselves and are certain that their ordeal will soon be over. I should declare an interest at some point: although I never knew Lynn Gilderdale under any name and have never met Kay, I do know some of Lynn’s friends including one who has been in contact with the author. I’ve come across some of Lynn’s online writing (although none of the friends-only stuff) and formed a very positive impression of her personality. She was certainly very caring, very appreciative of others’ concern for her welfare, and often took pains to avoid causing them any irritating by warning them of her abbreviated writing style or her long blog posts about her health (which, she said, was most of its content as her illnesses totally dominated her life) and sometimes played down health crises which had in fact been devastating for her, when conversing with severely disabled and sick friends (none of them quite as sick as she was). This book increased my respect for both the author and for Lynn. It showed Lynn to be a mature woman, understanding of others’ needs and eager to help them in any way she could. Of course, that is her mother writing, but it certainly fits with what I gathered from her own writing. There are passages about Kay’s feelings during the process of Lynn’s death and afterwards, such as thinking of Lynn in her “cell-like room” at Guy’s when she was 14 while confined in a police cell. There are no doubt those who will be sceptical and call it self-justification, but it fits with what those I know who have met her say about her, and what Lynn wrote about her. This book is a powerfully-written memoir, which shows the depth of Kay’s love and respect for Lynn. She expresses no regret for assisting in Lynn’s suicide, but clearly feels a lot of grief at losing her (again, something mutual friends confirm). What this is not is any kind of investigation as to how widespread the kinds of abuses Lynn suffered were, or are, and such a book is sorely needed and Lynn’s story would no doubt feature heavily in it. There have been countless stories since of people with ME, including severe ME, suffering because of the disbelief of doctors who insisted that their illness was being “encouraged” or was the result of abuse, leading to children being removed from their families or threatened with such action. Sufferers admitted to hospital still find that the environment makes their symptoms worse as it does not accommodate their sensitivity to noise, light, smells and chemicals; only this past weekend I learned of a woman with severe ME being admitted to hospital in an emergency, and coming out worse than she went in. One would hope, however, that this book would open people’s eyes (including the medical profession’s) to how damaging their current practice can be, so that nobody else suffers a major relapse or is so traumatised that they give up on life. It’s a very much needed wake-up call. |
AuthorI have lived with ME/CFS for fourteen years, nine of them totally bed-bound. I post about ME/CFS and related health and advocacy issues such as vaccination, EMFs, radiation and GM foods from the perspective of a holistic practitioner interested in healing our bodies, relationships, societies and mother Earth. My approach integrates science and spirit and includes the best of alternative and allopathc healing modalities and research. Archives
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