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.