Wednesday, July 22, 2009
More on Patient Advocacy
Not enough can be written in regards to defining the job of Patient Advocacy. This job is not for everyone – and the pay is lousy. A Patient Advocate can be a friend or family member. The Patient Advocate must keep the patient’s best interest in mind at all times, and attempt to represent what they know to be the patients opinions or attitudes. The Patient Advocate has to both deal with the reality at hand, and keep an eye down the road. Health decisions are complex and the PA has to rely on his wits to try to make the best ones. The PA cannot get discouraged by anything, but must be able to maintain balance and equilibrium (objectivity). The job of a Patient Advocate is often without rewards. It is not a rewards based job. Oftentimes the PA gets neither sense of purpose nor no sense of accomplishment. Any sense of worth has to be provided by the PA from his own resources. Discipline is a necessary trait for a PA. It allows him to build his own structure and to set his own pacing in the face of uncertain progress. In trying to define the tasks, obligations and reality of being a Patient Advocate, this PA will divide the material into categories. Some specific suggestions are made, some personal accounts are given. Both are necessary. This is not a personal journal. It is a guide established by one PA. Finally the PA has to think about money because fighting this disease is an expensive operation.
Thyroid
One of the first and most important things to consider in CFS is the functioning of the thyroid. Many people with CFS have a compromised thyroid function. It helps to have a doctor who is alert to this possibility. There are many books (see Reading) and sites on the internet discussing this phenomenon. The Patient Advocate does not learn about thyroid overnight. It takes time, sometimes longer than one would want. Certain doctors are more alert to the complexities of thyroid functioning. It is important that the Patient Advocate concerns himself with this issue, not as a doctor, but as an advocate. The thyroid has to be fixed first. According to Dr Ridha Arem (The Thyroid Solution), a smooth functioning thyroid in necessary to recovery.
Testing for thyroid function includes blood tests for TSH, free t3, free t4, TPO antibodies, ferritin and a few other things. Treatment will depend on the results of these tests - and on symptoms. It is important to get a good doctor.
While many CFS patients have an underactive thyroid, others can have an autoimmune disease called Hashimoto’s thyroiditis. Hashimoto’s mimics CFS in many symptoms: fatigue, brain fog, light sensitivity, and weight gain. The diagnosis of Hashimoto’s is primarily through elevated TPO antibodies, indicating that the body is attacking itself.
My patient has Hashimoto’s thyroiditis. My patient was diagnosed with HAIT by an endocrinologist in NYC in 2003. This endocrinologist decided to do nothing. The consequence of this decision is not known, although the Patient Advocate can speculate that this was “not good”. Subsequently, as symptoms - weight gain, light sensitivity, brain fog, goiter and TPO antibodies - worsened, my patient began taking Armour thyroid. A year and a half later we are still working to get it right.
There is a great amount of information available about diagnoses and treatment for hypothyroidism and Hashimoto’s thyroiditis on the internet. Various message boards and websites such as stopthethyroidmadness.com and realthyroidhelp.com can be very helpful in learning the language about the diagnosis and treatment of thyroid problems.
Problems with thyroid regulation can be complex and ongoing, and most patients will say that it takes some doing, over time, to successfully deal with them. In certain cases, most of the CFS symptoms will recede when the thyroid is normalized, but that is in a minority of cases. In most cases, some benefit is derived from treatment - so it is worth the effort.
A prudent Patient Advocate would attend to thyroid at the very beginning of the illness, and try to determine where and how it might be involved in the particular fatigue situation. Hashimoto’s, or hypothyroidism, is one of the few areas of the CFS picture that is clearly delineated. This dysregulation can be treated. For emphasis, I will repeat this: Hypothyroidism is the one very specific physical observation in this pathology that can be identified and treated. Hashimoto’s thyroiditis (myxedema) has been around for a long time, as has the treatment of thyroid hormone (Armour thyroid). People have been successfully taking desiccated thyroid for over 100 years.
Testing for thyroid function includes blood tests for TSH, free t3, free t4, TPO antibodies, ferritin and a few other things. Treatment will depend on the results of these tests - and on symptoms. It is important to get a good doctor.
While many CFS patients have an underactive thyroid, others can have an autoimmune disease called Hashimoto’s thyroiditis. Hashimoto’s mimics CFS in many symptoms: fatigue, brain fog, light sensitivity, and weight gain. The diagnosis of Hashimoto’s is primarily through elevated TPO antibodies, indicating that the body is attacking itself.
My patient has Hashimoto’s thyroiditis. My patient was diagnosed with HAIT by an endocrinologist in NYC in 2003. This endocrinologist decided to do nothing. The consequence of this decision is not known, although the Patient Advocate can speculate that this was “not good”. Subsequently, as symptoms - weight gain, light sensitivity, brain fog, goiter and TPO antibodies - worsened, my patient began taking Armour thyroid. A year and a half later we are still working to get it right.
There is a great amount of information available about diagnoses and treatment for hypothyroidism and Hashimoto’s thyroiditis on the internet. Various message boards and websites such as stopthethyroidmadness.com and realthyroidhelp.com can be very helpful in learning the language about the diagnosis and treatment of thyroid problems.
Problems with thyroid regulation can be complex and ongoing, and most patients will say that it takes some doing, over time, to successfully deal with them. In certain cases, most of the CFS symptoms will recede when the thyroid is normalized, but that is in a minority of cases. In most cases, some benefit is derived from treatment - so it is worth the effort.
A prudent Patient Advocate would attend to thyroid at the very beginning of the illness, and try to determine where and how it might be involved in the particular fatigue situation. Hashimoto’s, or hypothyroidism, is one of the few areas of the CFS picture that is clearly delineated. This dysregulation can be treated. For emphasis, I will repeat this: Hypothyroidism is the one very specific physical observation in this pathology that can be identified and treated. Hashimoto’s thyroiditis (myxedema) has been around for a long time, as has the treatment of thyroid hormone (Armour thyroid). People have been successfully taking desiccated thyroid for over 100 years.
Tuesday, July 21, 2009
Supplements
Various tasks will automatically fall upon the Patient Advocate's shoulders. Foremost among these will be learning about supplements. This entails spending large amounts of time in health food stores or stores such as Vitamin Shoppe, GNA and Inhealth. The PA learns these stores like the back of his hand and, in time, the PA will feel qualified to work in such a store. The PA will learn all the ins and outs of various supplements and various brand names. The PA will come to recognize the better brand names - Solgar or Thorne, or Douglas Labs. It is a competitive field and some products are better than others. Much of this work is hands-on -taking items off the shelf and reading the labels carefully. In this way the PA learns about the various makers of supplements and their reputations.
For instance, there was a time when the PA would frequent the health food store on 6th Avenue and 8th Sts, NYC, or the Vitamin Shoppe on West 4th St, the Vitamin Shoppe or Arrowroot in Bryn Mawr, PA, Whole Foods in St. Paul or the Wedge in Minneapolis. After a few years, the PA mastered this field and does not have to frequent these stores quite as often. But there are other places that he can go and other things that he can learn.
This work in health food stores will be repeated on the internet. Much needs to be read about supplements, their effects and their dosage. Shopping for the best prices is important, as are setting up accounts for reordering. Certain items, correcting a deficiency, might be regularly supplemented for some time. An example might be carnitine, which can be supplemented either by a prescription drug or by an OTC product. Carnitine levels can be measured in the blood and often CFS patients are low in carnitine. B12, magnesium, iron, ferritin and many things can be tested for blood levels. Supplements can correct deficiencies. Whether they bring betterment is another matter and is a case by case situation.
Certain products must be ordered on the internet. For instance if you are looking for probiotics, you might want to order VSL #3 from the internet. VSL #3 is seen as a broad spectrum powerful probiotic, recommended by Dr. Kenny de Meirleir. Others might suggest Culturelle, or Align or Mutaflor, available from Germany. Each has a slightly different twist and usage. Research on the internet together with diagnostic stool testing can narrow in on the product or products that might be most useful.
Another internet item is transfer factor, ordered directly from several sites and sometimes shipped overnight. Transfer factors are advocated by Dr. Joseph Brewer and others and help regulate the immune system. In the case of transfer factor, there is little specific testing that will validates its usefulness. A doctor usually gives guidance on the use of transfer factors.
Certain supplements are generally recommended for CFS patients. These can include b12, magnesium, carnitine, and iron and many other items. Decisions on what supplements to use on a particular basis will be decided by the patient and her doctor.
In the process of discovery, the PA will learn about Isoprinosine, X-cell anti-aging live cell, magnesium injections, transfer factors, glutathione depletion/methylation supplements, low dose naltrexone, certain “energetics” to support the mitochondria, and a host of other items. Gaining knowledge of these supplements takes a great deal of research and working with a sympathetic doctor. Use of supplements is heavily individualized and the benefits are determined often through trial and error. There is no clear roadmap.
For instance, there was a time when the PA would frequent the health food store on 6th Avenue and 8th Sts, NYC, or the Vitamin Shoppe on West 4th St, the Vitamin Shoppe or Arrowroot in Bryn Mawr, PA, Whole Foods in St. Paul or the Wedge in Minneapolis. After a few years, the PA mastered this field and does not have to frequent these stores quite as often. But there are other places that he can go and other things that he can learn.
This work in health food stores will be repeated on the internet. Much needs to be read about supplements, their effects and their dosage. Shopping for the best prices is important, as are setting up accounts for reordering. Certain items, correcting a deficiency, might be regularly supplemented for some time. An example might be carnitine, which can be supplemented either by a prescription drug or by an OTC product. Carnitine levels can be measured in the blood and often CFS patients are low in carnitine. B12, magnesium, iron, ferritin and many things can be tested for blood levels. Supplements can correct deficiencies. Whether they bring betterment is another matter and is a case by case situation.
Certain products must be ordered on the internet. For instance if you are looking for probiotics, you might want to order VSL #3 from the internet. VSL #3 is seen as a broad spectrum powerful probiotic, recommended by Dr. Kenny de Meirleir. Others might suggest Culturelle, or Align or Mutaflor, available from Germany. Each has a slightly different twist and usage. Research on the internet together with diagnostic stool testing can narrow in on the product or products that might be most useful.
Another internet item is transfer factor, ordered directly from several sites and sometimes shipped overnight. Transfer factors are advocated by Dr. Joseph Brewer and others and help regulate the immune system. In the case of transfer factor, there is little specific testing that will validates its usefulness. A doctor usually gives guidance on the use of transfer factors.
Certain supplements are generally recommended for CFS patients. These can include b12, magnesium, carnitine, and iron and many other items. Decisions on what supplements to use on a particular basis will be decided by the patient and her doctor.
In the process of discovery, the PA will learn about Isoprinosine, X-cell anti-aging live cell, magnesium injections, transfer factors, glutathione depletion/methylation supplements, low dose naltrexone, certain “energetics” to support the mitochondria, and a host of other items. Gaining knowledge of these supplements takes a great deal of research and working with a sympathetic doctor. Use of supplements is heavily individualized and the benefits are determined often through trial and error. There is no clear roadmap.
Wednesday, July 15, 2009
Diet
Right off the bat, there are a number of items where the Patient Advocate can be very helpful to the patient. One of these items is diet. Surprisingly very few doctors talk about diet as a treatment modality for CFS/ME. Those that do are often driven by their own prejudices about food. Perhaps the reason that doctors do not talk about diet is that they are ignorant on the subject? Perhaps it is because patients are so non-compliant in the area of diet? A few doctors, like Dr. de Meirleir or Dr Rae, have dieticians connected with their practice.
The fact is that diet can make a difference in fighting this disease. The important point is that care has to be taken to restrict what goes into the mouth of the patient. It takes hard work to insure that the patient eats only beneficial and supportive food. It is up to the PA to help the patient recognize this.
Different people – patients, doctors, researchers – say different things about diet. It is a very confusing subject. The PA and the patient are going to have to individualize the dietary part of their recovery, drawing from various sources. Regardless of the way that it develops, the effort brings betterment. Some people think that a vegetarian diet is healthier for CFS patients. Others feel the opposite - that the patient should eat a moderate protein animal diet, high in vegetables with a low carbohydrate intake. This is known as the Paleo diet or the Stone Age diet. I have spoken elsewhere of the strict dietary recommendation given by the patient MATN on the Prohealth discussion board. Other references were made to Dr. Sarah Myhill and her dietary recommendations. Dr. Myhill goes so far as to say that a vegetarian cannot recover from the disease. And then there is woman who wrote the SCD book.
The patient can be tested for allergies to dairy and wheat and gluten and the diet adjusted accordingly. Food allergy testing can be done through Genovas laboratory. Foods can be avoided or antigen drops can be taken for particular allergies in order to build tolerance.
Most diets for CFS involve restraint and moderation. The name of the game is cutting back and cutting out. Often the dietary restrictions, as developed, can be quite extensive. At times it looks as if everything that is pleasing to eat should be avoided. Many people cannot embrace such restrictions, no matter how sick they are. The CFS patient should avoid alcohol, tobacco, caffeine, high carbohydrate foods, sugar, white flour, and perhaps dairy, gluten, grains, and wheat. This is a forbidding task and it is not surprising that there is not a whole lot of discussion of diet on message boards or in the presentations of doctors. A PA can listen to an entire three-hour lecture by Dr. Paul Cheney and hear not one word about diet.
Often the patient will have special dietary needs. These might be unfolding and changing over times. Often a patient will only eat organic foods or foods that are not processed. With this in mind, the PA will scour the shelves of the Whole Foods or Kowalski’s or The Wedge to find the most beneficial foods for a particular diet, or the PA might ask questions of the staff about the ingredients of various prepared special foods. At a store like WF, the PA will learn that certain especially prepared foods are not available except on Tuesdays. The PA must get to know well the shelves of various food stores. As a sidelight the PA will learn much about diet that is advantageous to himself (and his friends).
Water, too, needs to be given fair consideration. Tap water includes too many variables and impurities - and needs to be avoided. In its place can be substituted various mineral waters, distilled water or reverse osmosis water from health coops or Whole Foods. It is a good idea to rotate water and not drink from plastic bottles. Glass containers are preferred.
This PA has done some research on water filters, eventually talking to a fellow in Maryland, recommended by Dr. Jacob Teitelbaum. This fellow, Brent, “knew all about them” Consequently the PA spent $200 on a water filtration system for his patient. This water filter is installed on the kitchen sink and needs a new filter every year. All water fro cooking goes through this filter. This advanced water filter does not screen out fluoride. This is a big problem, and points to the idea that a better filter is necessary. Fluoride is seen as a problem for CFSers, depending to whom you talk.
Care also has to be given to cookware. If the patient has a problem with nickel, all stainless steel cookware needs to be discarded and a nickel free brand of cookware should be substituted. Nickel-free cookware is not cheap.
Each patient must try to determine the most optimum dietary rules for themselves. What goes into the body is important in terms of bringing the necessary nutrients to a depleted system. This endeavor needs continuous attention and it can be an expensive enterprise as bottled water, non-antibiotic meats, and organic vegetables can be expensive.
The fact is that diet can make a difference in fighting this disease. The important point is that care has to be taken to restrict what goes into the mouth of the patient. It takes hard work to insure that the patient eats only beneficial and supportive food. It is up to the PA to help the patient recognize this.
Different people – patients, doctors, researchers – say different things about diet. It is a very confusing subject. The PA and the patient are going to have to individualize the dietary part of their recovery, drawing from various sources. Regardless of the way that it develops, the effort brings betterment. Some people think that a vegetarian diet is healthier for CFS patients. Others feel the opposite - that the patient should eat a moderate protein animal diet, high in vegetables with a low carbohydrate intake. This is known as the Paleo diet or the Stone Age diet. I have spoken elsewhere of the strict dietary recommendation given by the patient MATN on the Prohealth discussion board. Other references were made to Dr. Sarah Myhill and her dietary recommendations. Dr. Myhill goes so far as to say that a vegetarian cannot recover from the disease. And then there is woman who wrote the SCD book.
The patient can be tested for allergies to dairy and wheat and gluten and the diet adjusted accordingly. Food allergy testing can be done through Genovas laboratory. Foods can be avoided or antigen drops can be taken for particular allergies in order to build tolerance.
Most diets for CFS involve restraint and moderation. The name of the game is cutting back and cutting out. Often the dietary restrictions, as developed, can be quite extensive. At times it looks as if everything that is pleasing to eat should be avoided. Many people cannot embrace such restrictions, no matter how sick they are. The CFS patient should avoid alcohol, tobacco, caffeine, high carbohydrate foods, sugar, white flour, and perhaps dairy, gluten, grains, and wheat. This is a forbidding task and it is not surprising that there is not a whole lot of discussion of diet on message boards or in the presentations of doctors. A PA can listen to an entire three-hour lecture by Dr. Paul Cheney and hear not one word about diet.
Often the patient will have special dietary needs. These might be unfolding and changing over times. Often a patient will only eat organic foods or foods that are not processed. With this in mind, the PA will scour the shelves of the Whole Foods or Kowalski’s or The Wedge to find the most beneficial foods for a particular diet, or the PA might ask questions of the staff about the ingredients of various prepared special foods. At a store like WF, the PA will learn that certain especially prepared foods are not available except on Tuesdays. The PA must get to know well the shelves of various food stores. As a sidelight the PA will learn much about diet that is advantageous to himself (and his friends).
Water, too, needs to be given fair consideration. Tap water includes too many variables and impurities - and needs to be avoided. In its place can be substituted various mineral waters, distilled water or reverse osmosis water from health coops or Whole Foods. It is a good idea to rotate water and not drink from plastic bottles. Glass containers are preferred.
This PA has done some research on water filters, eventually talking to a fellow in Maryland, recommended by Dr. Jacob Teitelbaum. This fellow, Brent, “knew all about them” Consequently the PA spent $200 on a water filtration system for his patient. This water filter is installed on the kitchen sink and needs a new filter every year. All water fro cooking goes through this filter. This advanced water filter does not screen out fluoride. This is a big problem, and points to the idea that a better filter is necessary. Fluoride is seen as a problem for CFSers, depending to whom you talk.
Care also has to be given to cookware. If the patient has a problem with nickel, all stainless steel cookware needs to be discarded and a nickel free brand of cookware should be substituted. Nickel-free cookware is not cheap.
Each patient must try to determine the most optimum dietary rules for themselves. What goes into the body is important in terms of bringing the necessary nutrients to a depleted system. This endeavor needs continuous attention and it can be an expensive enterprise as bottled water, non-antibiotic meats, and organic vegetables can be expensive.
Thursday, July 9, 2009
The Internet
The second amazing resource for the Patient Advocate is the internet. An astonishing amount of information is available to the reader. The job of the PA is to sort through it, and to try to make some sense of it. CFS research can be divided into several categories: research of CFS doctors/researchers, and research of patient reports.
Each day the PA reads various websites that deal with CFS/ME. The message boards supply a great deal of information. This information is of course unfiltered. Over time the PA will develop means of filtering messages.
Various CFS/ME doctors have their own websites. Jacob Teitelbaum maintains his own website, as does A. Martin Lerner, Paul Cheney, Larry Sharp, Dale Guyer, Karen Vrchota, Ken Holtorf, David S. Bell, and Sarah Myhill. You can look them up. A number of these sites are very informative. A. Martin Lerner’s site is full of antiviral trial results, and Sarah Myhill has a free online CFS treatment book.
Patient forums are even better for learning about CFS/ME. Here is where you get the unvarnished truth. These forums are the real trenches of this struggle, and they are a goldmine of information. Unfortunately this information does not reveal itself instantly. Instead it takes daily reading for weeks, and months to get a sense of the most relevant and useful information (and posters).
Two of the oldest CFS/ME websites are prohealth.com and co-cure.org Rick Carson runs the Prohealth website, which has a forum and also sells many supplements. Rick himself has CFS, and is on the way to recovery. Additionally the Patient Advocate can join a number of Yahoo groups. A few of the major chat boards are CFSFMExperimental, drmyhillcare, LDNforCFS, lowdosenaltrexone, naturalthyroidhormones, CFS_Yasko, and naturalthyroidhormoneAdrenals. There are others and you can find them by snooping around.
In this PA’s estimation two websites stand out above the others. The first is aboutmecfs.org which is run by a quite amazing fellow, Cort Johnson. Cort’s website contains a raft of information and links on all aspects of the disease, ranging from the latest research of the Whittemore-Peterson Institute to his blog experience of Ashoka Gupta’s Amygdala retraining program. Cort reports on conferences, cutting edge treatments, interviews patients and doctors, and covers the entire emerging and established CFS/ME field. He does all the writing himself, with an easy and enviable writing style. Cort’s website consolidates in a very readable format the top minds and emerging theories in the field. It is entirely mind-bending that this site is the product of one individual; and it appears to be run on a shoestring. (Having seen Cort at various conferences I can attest that he does not travel “first class”.) Recently Cort has reformatted his website and added a blog called aboutmecfs.org/blog which includes the most challenging and focused presentations, interviews and conversations available on the internet.
The second site that this PA admires is BeatCFSandFMs.org. This site is run by an anonymous individual or two. This PA read this website at the beginning of his task as a Patient Advocate – and he still reads it. The PA quickly adopted the attitude presented by this person or persons, which is to be aggressive, be self-reliant, find doctors to work with and , and be prepared to spend money. The site includes a long list of subdivisions, the usual culprits, and how to pick them apart and attack them. It includes a raft of test strategies. It has remained unclear to me who established this site and whether it is currently being maintained. It gives the impression of being about ten years old. However, it remains curiously immediate -prescient might be the word. Take for instance the site’s identification of Hydrogen Sulfide as a serious problem in gut ecology. Just recently this idea has resurfaced as a major player in this disease with a theory advanced by Marian Dix Lemle (and partially confirmed by Kenny de Meirleir). This is the missing link says de Meirleir. And yet here it is sitting on BeatCFSandFMS.org seemingly for years– very surprising.
Every day the PA prints up material for further reading. This activity can result in immense piles of printed matter - articles and message board posts. The PA finds himself buried in paper. Most of the information is registered in the PA’s head for future use. Isn’t there a library where all of this is available? Certainly there must be knowledgeable people standing ready to help? How about the local University library? Don’t count on it.
Every day, the Patient Advocate will carefully goes through a number of key message boards. The PA will read both noteworthy and obscure posted items. Sometimes it is a fairly quick read. At other times, subjects emerge that lead to other matters, and the reading can become quite time-consuming. This is a daily effort and has been followed for years.
Much of it is of repetitious, but some ideas need repeating. A small amount of it is serious scientific work as science is missing in this disease. (The PA wishes that he had knowledge of biochemistry.) The rest is anecdotal evidence presented first or second hand. It is the PA’s responsibility to try to sort this out.
It is important for a PA to be open to suggestions. Most of these suggestions come from other patients. These message boards are an important part of the daily research of the PA. He spends up to three hours per day tracking down the important contributions of others. Entries have to be sifted through day after day. In this way, the PA gains confidence as to which posts and which posters are more creditable. The disease, this CFS, has a logic of its own. The PA is required, if he is a good PA, to follow all the treads, all the time and all the way.
Many posters are proactive and make tremendous suggestions. Over time, a reader can identify posters who are can really focus. It was very early on that this PA took notice of the posts of a certain MATN. This woman was curing herself of her version of CFS by seriously controlling her diet. MATN cut out everything superfluous and suspect – sugar, wheat, all processed foods, gluten, dairy, caffeine, flour and soy. She ate what is known as the Paleo diet, with a low carbohydrate emphasis. In time she recovered and went on her way in life.
MATN’s restrictions became a goal for this PA. It soon became apparent that her ideas were similar to those of Dr. Sarah Myhill (drmyhill.co.uk). Myhill’s belief is that CFSers have to eat a Stone Age diet, and especially lean meat (protein). Additional books on diet (Paleo diet, Eat Right for Your Bloodtype, Gottschalk’s book, and Children with Starving Brains) were borrowed from the library or else purchased. For weeks reading about diet was the daily activity of the PA. The PA was inclined to this idea because “it was something that we could do” - especially with the housebound state of the patient. But diet was something important that we could focus on. This PA want to thank MATN for driving home the message.
This PA’s situation was complicated in that his patient was seriously devoted to a vegetarian diet. Eventually the patient gave this up and started eating chicken and fish. Was this the magic bullet for my patient? The answer is no, but it did help stabilize her hypoglycemia reactions and to control her Candida - essentially through starving them. This was a step in the right direction. Carbohydrate pounding is for the birds.
Eventually, MATN cured herself of CFS and disappeared off the board. Once in a blue moon she revisits it and posts a renewed plea for others to follow her way. MATN’s strictures are not for everyone - as it is a tough road. In our case, the dietary changes have brought some long-term improvements to various metabolites, and a sense of a stronger foundation.
The posts of MATN were a Godsend - as they substantiated the instincts of this Patient Advocate. There have been other posters of note - too many to mention them all . Another important patient poster was Lisapetrison (Slayadragon), also on the old Immunesupport board. Her long and detailed daily posts highlighted the methods and attitudes of her doctor, a doctor whom my patient and Lisa share - one of the best. Lisapetrison documented her long struggle, its ups and downs, and finally chronicled her particular way of escaping the torments of this disease.
More recently, the contributions of Barrowinnovations (Catseye) have been just terrific. Barrowinnovations discovered for herself the benefit of diagnostic testing of the gut. Barrowinnovations wrote of and shared many important aspects of this disease, but it was only recently that she has focused on the testing the ecology of the gut. Her investigations into this and her writing about it have gone a long way towards giving credibility to what this PA and his patient were already doing.
Earlier, Jeffrey Bland also played an important role. There has been a lot of reading about gut dysbiosis, day in day out, for several years. Articles by Leo Galland and others proved essential. The advice of one of our doctors dovetailed precisely with our work up to the point. This doctor’s suggestions to do the Metametrix DNA GI Effects test sharpened our focus on the gut. The “string of discovery” went from knowing nothing about Candida and probiotics, through various doctors in the upper Midwest, to Kenny de Meirleir in Belgium. It goes without saying that this too – treating gut dysbiosis and controlling Candida – were items “that we could do”.
Google daily alerts can be set to pick up on specific subjects. For instance, a Goggle alert can be set for “amygdala” or “valgancyclivor” or “low dose naltrexone” - and a message is sent each time that a story or post appears on that subject. In this way the PA receives the latest news instantly. Results of clinical trials are immediately available worldwide, along those of newly approved drugs. The internet does not discriminate and the most immediate information is available to all.
Each day the PA reads various websites that deal with CFS/ME. The message boards supply a great deal of information. This information is of course unfiltered. Over time the PA will develop means of filtering messages.
Various CFS/ME doctors have their own websites. Jacob Teitelbaum maintains his own website, as does A. Martin Lerner, Paul Cheney, Larry Sharp, Dale Guyer, Karen Vrchota, Ken Holtorf, David S. Bell, and Sarah Myhill. You can look them up. A number of these sites are very informative. A. Martin Lerner’s site is full of antiviral trial results, and Sarah Myhill has a free online CFS treatment book.
Patient forums are even better for learning about CFS/ME. Here is where you get the unvarnished truth. These forums are the real trenches of this struggle, and they are a goldmine of information. Unfortunately this information does not reveal itself instantly. Instead it takes daily reading for weeks, and months to get a sense of the most relevant and useful information (and posters).
Two of the oldest CFS/ME websites are prohealth.com and co-cure.org Rick Carson runs the Prohealth website, which has a forum and also sells many supplements. Rick himself has CFS, and is on the way to recovery. Additionally the Patient Advocate can join a number of Yahoo groups. A few of the major chat boards are CFSFMExperimental, drmyhillcare, LDNforCFS, lowdosenaltrexone, naturalthyroidhormones, CFS_Yasko, and naturalthyroidhormoneAdrenals. There are others and you can find them by snooping around.
In this PA’s estimation two websites stand out above the others. The first is aboutmecfs.org which is run by a quite amazing fellow, Cort Johnson. Cort’s website contains a raft of information and links on all aspects of the disease, ranging from the latest research of the Whittemore-Peterson Institute to his blog experience of Ashoka Gupta’s Amygdala retraining program. Cort reports on conferences, cutting edge treatments, interviews patients and doctors, and covers the entire emerging and established CFS/ME field. He does all the writing himself, with an easy and enviable writing style. Cort’s website consolidates in a very readable format the top minds and emerging theories in the field. It is entirely mind-bending that this site is the product of one individual; and it appears to be run on a shoestring. (Having seen Cort at various conferences I can attest that he does not travel “first class”.) Recently Cort has reformatted his website and added a blog called aboutmecfs.org/blog which includes the most challenging and focused presentations, interviews and conversations available on the internet.
The second site that this PA admires is BeatCFSandFMs.org. This site is run by an anonymous individual or two. This PA read this website at the beginning of his task as a Patient Advocate – and he still reads it. The PA quickly adopted the attitude presented by this person or persons, which is to be aggressive, be self-reliant, find doctors to work with and , and be prepared to spend money. The site includes a long list of subdivisions, the usual culprits, and how to pick them apart and attack them. It includes a raft of test strategies. It has remained unclear to me who established this site and whether it is currently being maintained. It gives the impression of being about ten years old. However, it remains curiously immediate -prescient might be the word. Take for instance the site’s identification of Hydrogen Sulfide as a serious problem in gut ecology. Just recently this idea has resurfaced as a major player in this disease with a theory advanced by Marian Dix Lemle (and partially confirmed by Kenny de Meirleir). This is the missing link says de Meirleir. And yet here it is sitting on BeatCFSandFMS.org seemingly for years– very surprising.
Every day the PA prints up material for further reading. This activity can result in immense piles of printed matter - articles and message board posts. The PA finds himself buried in paper. Most of the information is registered in the PA’s head for future use. Isn’t there a library where all of this is available? Certainly there must be knowledgeable people standing ready to help? How about the local University library? Don’t count on it.
Every day, the Patient Advocate will carefully goes through a number of key message boards. The PA will read both noteworthy and obscure posted items. Sometimes it is a fairly quick read. At other times, subjects emerge that lead to other matters, and the reading can become quite time-consuming. This is a daily effort and has been followed for years.
Much of it is of repetitious, but some ideas need repeating. A small amount of it is serious scientific work as science is missing in this disease. (The PA wishes that he had knowledge of biochemistry.) The rest is anecdotal evidence presented first or second hand. It is the PA’s responsibility to try to sort this out.
It is important for a PA to be open to suggestions. Most of these suggestions come from other patients. These message boards are an important part of the daily research of the PA. He spends up to three hours per day tracking down the important contributions of others. Entries have to be sifted through day after day. In this way, the PA gains confidence as to which posts and which posters are more creditable. The disease, this CFS, has a logic of its own. The PA is required, if he is a good PA, to follow all the treads, all the time and all the way.
Many posters are proactive and make tremendous suggestions. Over time, a reader can identify posters who are can really focus. It was very early on that this PA took notice of the posts of a certain MATN. This woman was curing herself of her version of CFS by seriously controlling her diet. MATN cut out everything superfluous and suspect – sugar, wheat, all processed foods, gluten, dairy, caffeine, flour and soy. She ate what is known as the Paleo diet, with a low carbohydrate emphasis. In time she recovered and went on her way in life.
MATN’s restrictions became a goal for this PA. It soon became apparent that her ideas were similar to those of Dr. Sarah Myhill (drmyhill.co.uk). Myhill’s belief is that CFSers have to eat a Stone Age diet, and especially lean meat (protein). Additional books on diet (Paleo diet, Eat Right for Your Bloodtype, Gottschalk’s book, and Children with Starving Brains) were borrowed from the library or else purchased. For weeks reading about diet was the daily activity of the PA. The PA was inclined to this idea because “it was something that we could do” - especially with the housebound state of the patient. But diet was something important that we could focus on. This PA want to thank MATN for driving home the message.
This PA’s situation was complicated in that his patient was seriously devoted to a vegetarian diet. Eventually the patient gave this up and started eating chicken and fish. Was this the magic bullet for my patient? The answer is no, but it did help stabilize her hypoglycemia reactions and to control her Candida - essentially through starving them. This was a step in the right direction. Carbohydrate pounding is for the birds.
Eventually, MATN cured herself of CFS and disappeared off the board. Once in a blue moon she revisits it and posts a renewed plea for others to follow her way. MATN’s strictures are not for everyone - as it is a tough road. In our case, the dietary changes have brought some long-term improvements to various metabolites, and a sense of a stronger foundation.
The posts of MATN were a Godsend - as they substantiated the instincts of this Patient Advocate. There have been other posters of note - too many to mention them all . Another important patient poster was Lisapetrison (Slayadragon), also on the old Immunesupport board. Her long and detailed daily posts highlighted the methods and attitudes of her doctor, a doctor whom my patient and Lisa share - one of the best. Lisapetrison documented her long struggle, its ups and downs, and finally chronicled her particular way of escaping the torments of this disease.
More recently, the contributions of Barrowinnovations (Catseye) have been just terrific. Barrowinnovations discovered for herself the benefit of diagnostic testing of the gut. Barrowinnovations wrote of and shared many important aspects of this disease, but it was only recently that she has focused on the testing the ecology of the gut. Her investigations into this and her writing about it have gone a long way towards giving credibility to what this PA and his patient were already doing.
Earlier, Jeffrey Bland also played an important role. There has been a lot of reading about gut dysbiosis, day in day out, for several years. Articles by Leo Galland and others proved essential. The advice of one of our doctors dovetailed precisely with our work up to the point. This doctor’s suggestions to do the Metametrix DNA GI Effects test sharpened our focus on the gut. The “string of discovery” went from knowing nothing about Candida and probiotics, through various doctors in the upper Midwest, to Kenny de Meirleir in Belgium. It goes without saying that this too – treating gut dysbiosis and controlling Candida – were items “that we could do”.
Google daily alerts can be set to pick up on specific subjects. For instance, a Goggle alert can be set for “amygdala” or “valgancyclivor” or “low dose naltrexone” - and a message is sent each time that a story or post appears on that subject. In this way the PA receives the latest news instantly. Results of clinical trials are immediately available worldwide, along those of newly approved drugs. The internet does not discriminate and the most immediate information is available to all.
Friday, July 3, 2009
Reading about CFS/ME
At the beginning the typical Patient Advocate knows very little about this illness. However the PA has no problem seeing that this illness involves profound fatigue. Very quickly the PA finds out that this disease avoids all specific classifications that one has learned to associate with other diseases. CFS/ME is thought to be a multi-system illness - but what does that mean and how does one break it down? The PA learns about CFS/ME very slowly. It takes time, persistence and discipline.
Where does one learn about this illness? A good place to start is with reading books. Many books are available to the Patient Advocate. Jacob Teitelbaum’s Fatigued and Fantastic is a helpful book. Teitelbaum has a great deal of practical experience with treating CFS and is widely respected in the field, currently running the Fibromyalgia and Fatigue Centers. Other people say negative things about Dr. Teitelbaum - that he is a rip-off and is only into making money. You can believe this or not. This kind of negative thinking is endemic to the subject of CFS/ME.
The first thing that a Patient Advocate has to decide is whether the PA is going to try to learn the established but fluid variables of this disease, or whether he is going to get sidetracked in many of the contestations surrounding this disease and it’s history. This particularly Patient Advocate tries to maintain his objectivity with the goal of making his daughter better. This is his task. The PA does not have to find the larger keys to all the subsets of this disease; he only has to help find the solution (or partial solution) to one subset – his patient’s. This in itself is a big task. The Patient Advocate realizes first-hand that CFS/ME is a heart-rending disease, but his real responsibility is to his own patient. The PA chooses not to get misdirected in an already confusing field. If his efforts could be helpful to others, this certainly would be an added bonus.
Just getting through Teitelbaum's book is a daunting task. At first it seems impossible to master this book. It is all so incomprehensible. The PA needs to keep after it. This book needs to be read many times over months and years. The PA can throw out parts of the book that do not apply to his patient's situation. For instance if the patient does not have pain as a primary symptom, the PA can skip that part. Other, more relevant parts can be read and memorized. At first much of the information seems incomprehensible, and the treatments too many and with too much overlap. Does the patient take all these items? Could this be possible? Jacob Teitelbaum’ book should be placed prominently on a shelf, where it will be the target of many, many readings in the coming months and years. This PA suggests that you start here. Other people might suggest starting with another book.
Over the past five years, this PA has read many books touching on the subject of CFS/ME. Sometimes the PA finds books in the public library down the street or in used bookstores. Mostly the PA buys online at amazon.com or abe.com. This habit continues to the very present when the PA has just bought two older books - The Canary and Chronic Fatigue and The Brain Diet. Both of these books drifted into his field of vision in relation to an important topic: gut ecology.
These are some of the books that the PA has on his shelf:
General CFS/ME books:
Your Symptoms are Real by Benjamin Natelson
Reviving the Broken Marionette by Maija Haavisto
Explaining “Unexplained Illness” by Martin Pall
Chronic Fatigue Unmasked by Gerald E. Poesnecker
Encounters with the Invisible by Dorothy Wall
Desperation Medicine by Ritchie Shoemaker
The Promise of Low Dose Naltrexone Therapy by Moore and Wilkinson
Chronic Fatigue Syndrome and Fibromyalgia by Alison Bested
Betrayal by the Brain by Jay Goldstein
Chronic Fatigue, Fibromyalgia and Lyme Disease by Goldberg and Trivieri
Mold Warriors by Ritchie Shoemaker
Missed Diagnosis by Byron Hyde
Online CFS book by Sarah Myhill
Hormones: Thyroid and Adrenal
The Hormone Solution by Thierry Hertoghe
Adrenal Fatigue by James Wilson
Living Well with Hypothyroid by Mary Shomon
Stop the Thyroid Madness by Jamie Bowthorpe
The Thyroid Solution by Ridha Arem
Thyroid Power by Richard Shames
Metabolic Treatment of Fibromyalgia by John Lowe
What Your Doctor may not tell you about Hypothyroidism by Kenneth Blanchard
Diet and Gut Ecology:
Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall
Gut and Psychology Syndrome by Cambell-McBridge
Children with Starving Brains by Jacquelyn McCandless
The Brain Diet by Alan Logan
Digestive Wellness by Elizabeth Lip ski
The PA does not pretend to have digested all the information in these books. The PA reads these books to get a sense of the parameters of this disease. The Patient Advocate returns to various books in unfolding circumstances and extracts specifics that advance his thoughts. The PA does not have any training to master these subjects. What the PA does have is the ability to form generalized concepts about possible directions regarding research and treatment. The PA is not playing doctor. The PA is more of a guide, a scout, a gatherer or a coordinator.
The PA would like to mention in particular a book by Maija Haavisto, a young Finnish journalist. Maija got "sick and tired" of the lack of knowledge of doctors and decided to write her own book. The book is entitled Reviving the Broken Marionette, and it is the most comprehensive and up to date reference on existing treatments for CFS/ME. It is a winner.
Where does one learn about this illness? A good place to start is with reading books. Many books are available to the Patient Advocate. Jacob Teitelbaum’s Fatigued and Fantastic is a helpful book. Teitelbaum has a great deal of practical experience with treating CFS and is widely respected in the field, currently running the Fibromyalgia and Fatigue Centers. Other people say negative things about Dr. Teitelbaum - that he is a rip-off and is only into making money. You can believe this or not. This kind of negative thinking is endemic to the subject of CFS/ME.
The first thing that a Patient Advocate has to decide is whether the PA is going to try to learn the established but fluid variables of this disease, or whether he is going to get sidetracked in many of the contestations surrounding this disease and it’s history. This particularly Patient Advocate tries to maintain his objectivity with the goal of making his daughter better. This is his task. The PA does not have to find the larger keys to all the subsets of this disease; he only has to help find the solution (or partial solution) to one subset – his patient’s. This in itself is a big task. The Patient Advocate realizes first-hand that CFS/ME is a heart-rending disease, but his real responsibility is to his own patient. The PA chooses not to get misdirected in an already confusing field. If his efforts could be helpful to others, this certainly would be an added bonus.
Just getting through Teitelbaum's book is a daunting task. At first it seems impossible to master this book. It is all so incomprehensible. The PA needs to keep after it. This book needs to be read many times over months and years. The PA can throw out parts of the book that do not apply to his patient's situation. For instance if the patient does not have pain as a primary symptom, the PA can skip that part. Other, more relevant parts can be read and memorized. At first much of the information seems incomprehensible, and the treatments too many and with too much overlap. Does the patient take all these items? Could this be possible? Jacob Teitelbaum’ book should be placed prominently on a shelf, where it will be the target of many, many readings in the coming months and years. This PA suggests that you start here. Other people might suggest starting with another book.
Over the past five years, this PA has read many books touching on the subject of CFS/ME. Sometimes the PA finds books in the public library down the street or in used bookstores. Mostly the PA buys online at amazon.com or abe.com. This habit continues to the very present when the PA has just bought two older books - The Canary and Chronic Fatigue and The Brain Diet. Both of these books drifted into his field of vision in relation to an important topic: gut ecology.
These are some of the books that the PA has on his shelf:
General CFS/ME books:
Your Symptoms are Real by Benjamin Natelson
Reviving the Broken Marionette by Maija Haavisto
Explaining “Unexplained Illness” by Martin Pall
Chronic Fatigue Unmasked by Gerald E. Poesnecker
Encounters with the Invisible by Dorothy Wall
Desperation Medicine by Ritchie Shoemaker
The Promise of Low Dose Naltrexone Therapy by Moore and Wilkinson
Chronic Fatigue Syndrome and Fibromyalgia by Alison Bested
Betrayal by the Brain by Jay Goldstein
Chronic Fatigue, Fibromyalgia and Lyme Disease by Goldberg and Trivieri
Mold Warriors by Ritchie Shoemaker
Missed Diagnosis by Byron Hyde
Online CFS book by Sarah Myhill
Hormones: Thyroid and Adrenal
The Hormone Solution by Thierry Hertoghe
Adrenal Fatigue by James Wilson
Living Well with Hypothyroid by Mary Shomon
Stop the Thyroid Madness by Jamie Bowthorpe
The Thyroid Solution by Ridha Arem
Thyroid Power by Richard Shames
Metabolic Treatment of Fibromyalgia by John Lowe
What Your Doctor may not tell you about Hypothyroidism by Kenneth Blanchard
Diet and Gut Ecology:
Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall
Gut and Psychology Syndrome by Cambell-McBridge
Children with Starving Brains by Jacquelyn McCandless
The Brain Diet by Alan Logan
Digestive Wellness by Elizabeth Lip ski
The PA does not pretend to have digested all the information in these books. The PA reads these books to get a sense of the parameters of this disease. The Patient Advocate returns to various books in unfolding circumstances and extracts specifics that advance his thoughts. The PA does not have any training to master these subjects. What the PA does have is the ability to form generalized concepts about possible directions regarding research and treatment. The PA is not playing doctor. The PA is more of a guide, a scout, a gatherer or a coordinator.
The PA would like to mention in particular a book by Maija Haavisto, a young Finnish journalist. Maija got "sick and tired" of the lack of knowledge of doctors and decided to write her own book. The book is entitled Reviving the Broken Marionette, and it is the most comprehensive and up to date reference on existing treatments for CFS/ME. It is a winner.
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