Dr. Marshall on XMRV

[Mark]

But how do we evaluate Marshall's protocol? We can't. We have been deprived of open, free discussion of the protocol.

Which was all I ever needed to know in order to condemn him. Anybody who is claiming to have a cure for the incurable, which only they know, and they are not putting that information into the public domain to help people, is obviously a deeply unpleasant and unethical person and almost certainly they are lying. In the incredibly unlikely case where somebody comes along with a genuine cure for something and behaves in this way, they would merely be a deeply unpleasant and unethical person.

 

[hvs]

HVS - when you say you are classic Incline cohort, what does that mean exacty? Is it where there is a viral trigger/acute onset? Sorry to ask, but I am pretty new to all this but think I might be an Incline stylee case.

Yep, quick onset associated with a big illness. Herpes family viruses reactivated (in my case, EBV and HHV-6). Classic RNaseL and NK cell profile.

No sign of toxic exposure; no bacterial infection; no legitimate case for Lyme.

 

[SDD1244]

I was just wondering where Marshall made the cure claims ? I remember that I read on his website that their members may relapse, but if they do.. that they wouldn't be as nearly ill as they were in the first place and would probably just need to do a short course of antibiotics. From what I've witnessed, it seems like the longer you have been ill... the more bacteria you need to kill and unfortunately, the longer you need to be on treatment.

Yes... the treatment has risks. If you've been ill for many years the detoxing alone can cause you problems. Everyone on the MP is aware of this.

I certainly don't approve of censorship and I once complained to one of the moderators when I was on the protocol. I can only say that many of the people on this protocol are very ill and since the immunopathology from the protocol can make them feel much worse... that this may be the reason why non-members are not allowed to view progress notes from members who are in the advanced phases.

These antibiotic protocols require a commitment from the people who chose to go on them. It is not an easy route, but this is perhaps the only treatment that I've seen possibly cure CFS patients. I remember being on the protocol and having a horrible day after I ramped up on the minocycline. The following day... I felt great ! I actually felt normal and had tons of energy. It was incredible. It was a taste of what it was like to feel healthy and that is what kept me on the protocol for over a year.

One thing Marshall deserves credit for is discovering bacteria in sarcoidosis patients. He saved his own life with the Marshall Protocol.

I am very concerned with taking anti-virals for this illness. If we have an infection... why suppress it ? And especially if we have a bacterial infection ? That is only going to hurt us even more, I would think. So regardless what you may think of Marshall.... I think it is important to recognize bacterial infections in CFS patients and also to support people who chose this difficult route as their treatment.

 

[Tony]

This pro MP site states: "While other treatments for chronic disease use palliative medications in an effort to cover up symptoms, the Marshall Protocol is a curative treatment, which strives to address the root cause of the disease process."
http://bacteriality.com/about-the-mp/

His site here: http://autoimmunityresearch.org/ claims to have found the cause.

I know of several who have tried the MP with mixed results. One with MCS recovered, and I think fully. One is still on it after 3 years and is happy to have improved quite a bit. Another managed to get back to work part time.
Another 3/4 stuck at it for a year and got no benefit at all. A couple remarked they felt better after stopping. Some have blamed the MP for greatly worsening their health.
Marshall's ideas are unproven, experimental and in no way curative for most.

 

[Sheesh!]

So much for using Ad Hominem to rebut Ad Hominem

Thank you for those who apologized and for those who were as offended by my post as I was by some of the posts, you have my apologies.

I'll try to at least give my perspective/opinions regarding some of the comments above. If I miss any, you are free to remind me, as I am not trying to avoid any comment in particular.

First, I understand people's frustration without being able to have a free and open discussion on the Marshall Protocol website. The site receives thousands of hits and the staff is all volunteer and so people are directed to read the materials. Marshall has described the science behind his theory of chronic illness so that it might be understood by most people and so it is in the public domain. As far as I know, he would probably be open to talking with any researcher who is able comprehend the science. If you are such a person, please look up his phone number, which is posted on ARF, and give this a try.

Beyond a certain point, when people become argumentative, attending to their arguments become disruptive to people on the site who are trying to get well--it also uses up the time of moderators and members who would other wise be focusing on helping others and taking care of themselves. It is a site for people interested in doing the protocol. They don't apologize for that. Site developers have a right to determine what kind of site they are.

I find it most frustrating when members of long standing get shut down. I think that happens when Marshall doesn't have an idea or he has an idea but doesn't want to be premature about sharing it because of its potential ramifications. Sometimes he may not want to answer because he has a paper coming out soon or because he is too busy and the answer would be too involved.

Marshall tends to answer short questions fairly easily unless the person keeps asking for answers to what has already been written about or can be found in the videos.

Second, Amy Proal's website is her website. It is not the Marshall Protocol website, and like I said everyone on the MP is a volunteer. When someone seems like they need convincing if a member goes about trying to convince someone, you will often see a member of long standing post to the contrary. People do this because they know the MP is a huge commitment and no one should start it unless they are able to do it and can commit. I don't think telling someone that their symptoms seem to suggest that the MP is for them is an attempt to convince them. Typically, that is followed by the admonition to read, read, read because people have to make up their own minds.

Third, lots of folk on the MP are very sick and with that comes brain fog. People make poor decisions, have trouble hearing others suggest that they might want to consider backing down from their abx, people often are also in a hurry and often go too fast, and when the immune systems turns on it can get quite aggressive. Additionally, the moderators used to have almost a one-size fits all approach and that has changed; many people may have found the protocol to be intolerable given the older approach and that might account for many going off of it. That's what often kills people in acute infections: the activity of the immune system in response to the infection.

A friend of mine's daughter ended up in a research hospital in Canada due to a life threatening situation brought on by a pain med she was using. Brain fogged, the daughter ought to have backed down on her abx because she was having too much pain immunopathology, but this, like I said, is often very hard to comprehend when a person's thought processes becomes even foggier because of brain immunopathology. Because they were unsure about the MP, the doctors successfully took the daughter off of the MP. (Going off of the MP while organs are in crisis is not advisable because the organs can fail without olmesartan; there have been a couple of cases of this happening. This young woman's organs were not in crisis.) Her doctors and nurses kept asking her about the protocol throughout her several week stay, listened to her about her improvements, researched the MP online, were supportive of her being on the MP, and they told her they thought she should go back on the MP as soon as what they were treating her for healed.

I have had friends stop the MP--they were involved when the approach was more aggressive. My friends had what they felt like were intolerable symptoms on the MP, and for the most part feel like the MP helped them some and have pretty much maintained the progress they made. This does not mean that others would not find themselves in a bad way after stopping the MP, particularly if their immune system was no longer shut down enough to tune down the symptoms once they were no longer taking olmesartan. My guess is that unless a person's body was ready to win the fight--i.e., had reached that magic tipping point where their immune system was able to take care of what ailed them eventually--, then they might be miserable and continue to spiral downward. I don't know; that's just a guess.

Let me clarify that via my own experience--albeit an experience of one--, I had severe allergies and MCS at one time, the sicker I became, my allergies and MCS seemed to disappear and even though the pain I was experiencing in joints (and the evidence on X-rays) would suggest that I had plenty of inflammation, I had an exceptionally low SED rate. I appeared to be a person without inflammation. What I surmised is that my immune system had nearly shut down completely, and so while I was still having symptoms and was developing some new symptoms, many of my CFS like symptoms had disappeared. Mostly crushing fatigue, organ failure like symptoms and nerve symptoms were evident.

Fourth, I find it interesting that there are many people with CFS and Fibro who take any number of drugs to manage their symptoms and yet they probably could not tell you how the drugs work in their systems. IMO, there are many drugs out on the market where the researchers themselves do not understand how the drugs work. And yet, Marshall to the extent he is able tries to explain how these drugs work to help the immune system function. And they are also drugs with great safety records. Olmesartan research shows that it helps protect the kidneys from organ damage when they are functioning poorly. Aside from his personality, I do not understand the hostility that is out there about him. Granted, his personality can be hard to swallow.

Many drugs have side affects and what works for some does not work for all. Most drugs are "proven" based on observational studies; indeed, pharmaceutical companies often seem to be doing huge studies on our population. Also, many drugs are used off label without the studies to back up off label use. While Marshall believes that the MP will work for all, there are a number of us who are not so sure. It is admitted that some people may be too sick to do the protocol. The strategies used to control immunopathlogy may not be enough and some people may be unable to handle it. My IP was wild and I got through much of the first two years one moment at a time. Most of us on the MP recognize that the MP is an experimental approach. I always use that language when I am talking to someone and telling them what I am doing.

I am also often amazed how the science as described by Marshall sheds light on the results of some research that makes it into the news that leaves the researchers wondering what to make of their results. If I could think of some of them, I'd mention them here, but I cannot and I do not collect research or links because even though I am able to write, organizing something like that is beyond my own brain fog and energy levels.

Fifth, I see no evidence of Marshall making a lot of money. Now whether there is possible money in his future, that's another thing. What I see is someone tirelessly working to spread the news about his findings, going to conferences around the world and trying to convince research hospitals to take on studies using the protocol. Currently one hospital in China--the biggest research hospital in the world I believe--is doing just that, and they are working on another, which might already be solidified. Like all people, he has light and shadow sides. Unfortunately his shadow characteristics are pretty much out there for all to see. It would be easy to suppose more. I tend to think that for the most part--notice the qualifier--what you see is what you get even if it is all too often unpleasant.

Marshall is also no friend to the Vit D industry. Someone I know who had a falling out with Marshall, and whose daughter is now entirely recovered and off MP drugs, still believes in the MP despite disagreeing with how Marshall has handled the site and being banned herself. When I was alarmed by one particular site that was making it sound like the MP was nothing but a death sentence, I provided her with the link. It was an anonymous source--someone who would not stand behind what he was saying. She said she knew the guy; he was a researcher from a major university who was heavily funded by the Vit D industry.

Funny, one of the members of the Vitamin D counsel frequently forgets to disclose that his wife owns a company that sells vitamin. This is the same counsel that recommends increasing the amount of Vitamin D in food. He and his wife have become very rich off of vitamin D supplementation. However, he is very respected among those who are invested in Vitamin D, and since Vitamin D's usefulness appears to be generally accepted, he is seen as a good guy.

For a moment, try to remember how you have felt when people have doubted whether or not CFS is real. That's pretty much what Marshall faces all the time. CFS has been thought to be a psychological problem because for the longest time there were few bio markers, and even bio markers that were known were not well known. Vitamin D is thought to be great even still despite the growing research that should cause people to pause. And while research continues to grow linking bacteria to chronic illness and researchers are beginning to understand the workings and importance of the Vitamin D receptor, not much of this is widely known or understood. The uphill battle that we, as people suffering from CFS have faced, is the sort of battle that the people who are researching L forms and its relationship to immune disorders face.

That doesn't excuse his behavior. I just wanted you to put yourself into his shoes for a moment.

When someone is attempting to change a scientific paradigm, he or she usually faces stiff criticism. Often from people in the field unwilling to let go of their own pet theories and do the research to prove the new theory wrong. Frequently people are not proved right in their own life times and must endure being laughed at and shunned. A friend recently told me that the fellow who came up with the plate tectonics ended up committing suicide.

And note that Marshall, until his recent collaboration with that Chinese research hospital, has not had the resources to do the sort of research that most would prefer. He decided to test out his theory and invite others to do the same. In an atmosphere where Vitamin D has become THE magic bullet, it is difficult to imagine another route, particularly when much university research is funded by the pharmaceutical industry and the growing supplement industry. A potential cure involving a few antibiotics and an easily produced drug like olmesartan is not going to interest the pharmaceutical companies; not when a lot of money can be made in producing drugs that can be said to immediately make one feel better. How much better and for how long without damaging side effects is another story. By the way, I have accepted it as a given from the very start of my MP experience that there could be long term negative ramifications of my doing the MP. I am betting on him being right.

Sixth, while the site might appear cultish because of Marshall's demeanor--an organization headed up by a "strong" leader--and how people respond to him, know that there are plenty of people who talk behind the scenes about how to cope with his personality. And people who are getting well are generally very grateful for his research and to him personally. This does not mean they are blind to how difficult it can be to relate to him at times; they do accept it as a given. Otherwise, you'd be driven to distraction. And believe it or not, he can be very kind and thoughtful as well. Something that is particularly evident in the progress reports that only cohort members can see.

It is possible there have been people who could not cope with him and have dropped out as a result. Early on, I would become irate at the way he handled the questions of people questioning the bona-fides of the MP. I have often thought that he ought to be banned from his own site. As I have calmed down, I no longer invest any energy in that. Indeed, like many others I have found a way to work around him and just get on with my recovery. I know people who are still on the MP and yet do not post; they often do not read the site, relying instead on their friends to keep them abreast of updates (e.g., send them important links). It's too bad, and it is what it is.

I have noticed, and I don't think just because I have gotten used to him, that the healthier Marshall gets the better behaved he is. Or should I say, his outbursts are less frequent and the more diplomatic he is. I have seen improvement even as I wish he would stop shooting himself in his foot.

Seventh, while some may believe that most people with CFS are desperate, I will share with you that that is a criticism that is often leveled at people for trying the MP. As if their thinking is clouded by their desperation. And no doubt that is true for some people. Also, using the word cult when you know that some of the people on this site might be on the MP is insensitive at least IMO.

While my reaction (my purposeful use of Ad Hominem to highlight what appeared to be Ad Hominem to me) might have seemed gross to some of you, I have been on other support sites where the mere mention of my being on the MP and trying to share my positive experience has led me to be attacked by moderators and members alike, and has led to people who asked me questions to be attacked as well. I have run into a number of people who seem to think they need to scare people off the MP for their own good. Using a word like cult or charlatan, will likely have that impact. Oooohhhh, don't even investigate the MP.

So for my being heavy handed right out of the gate, I apologize.

Eighth, As to the topic of the thread, people had already gotten away from what Marshall said and attacked him as a person. Okay, so you don't hold much store in what he says, well then, address WHAT he said and say why you don't think it holds water. Frequently the man just comes out with stuff that later ends up being proved right by research that comes out later. He can be quick and glib and darn it if he hadn't nailed it. Anyone who behaves as if he is right for no apparent good reason is annoying, particularly if ends up being right. One would only know this by following the posts over a number of years. Maybe he is just lucky or maybe those of us who are on the site for a long time only remember his successes because our thinking is clouded. I always reserve the right to be just batsh*t crazy and totally wrong about Marshall and the MP.

Ninth, in regard to how long people are on the MP, most of the people who have started the MP are very sick. I estimate that I will not be functioning fully until after at least six or seven years. We are just in the last year or two getting folk who are not that sick and they are reporting that symptoms they had long thought were just normal body quirkiness are disappearing. Some folk who have had most of their physical symptoms disappear are noticing continued brain improvement, including emotional health. A few years from now, when I am thinking more clearly, I might think twice--at the very least--about using Ad Hominem to address Ad Hominem in an online post I certainly would think twice now in person... even before posting my last post.

So there are people who have finished the MP and are no longer taking the meds and there are people who continue to take the meds because they keep seeing improvement even though they have their lives back. Frankly, I suspect that Marshall could be wrong and that viruses may have a greater role in CFS, though perhaps not the one that was supposed to be the topic of this discussion. If I had to stay on olmesartan my whole life to keep my immune system functioning properly to keep a virus from shutting down my body's ability to fight bacteria, I would do that. Also, if there is ever an anti-viral that does not suppress the immune system, I would try that.

When I am well--I do recognize that when might actually be IF--, you probably won't find me posting to these sites either given the time and effort involved. I'll probably do what I've always done and be working in some helping profession full time and having the time of my life. I spent nearly my life being ill. After so many years, I'm looking forward to putting my focus elsewhere. I don't blame folk who have gotten their lives back for not sticking up for the MP online.

Tenth, I do not think that this whole community is non-supportive.

(That was rhetoric people. The same sort of sweeping generalizations that were going on in some of the posts, or so was my experience of what was written. If that is not evident to some or even all, there's nothing I can do to make you experience what I experienced. And if I read too much into what was being said in the posts, then all I can do is ask that you find it in yourself to forgive me. It has been extremely difficult to be someone on the MP and be a part of online communities.)

I happen to know that there are supportive people in this community.

Peace.

 

[zoe.a.m.]

Fourth, I find it interesting that there are many people with CFS and Fibro who take any number of drugs to manage their symptoms and yet they probably could not tell you how the drugs work in their systems. Indeed, there are many drugs out on the market where the researchers themselves do not understand how the drugs work. And yet, Marshall to the extent he is able tries to explain how these drugs work to help the immune system function. And they are also drugs with great safety records. Olmesartan research shows that it helps protect the kidneys from organ damage when they are functioning poorly. Aside from his personality, I do not understand the hostility that is out there about him. Granted, his personality can be hard to swallow.

Indeed, many drugs have side affects and what works for some does not work for all. (While Marshall believes that the MP will work for all, there are a number of us who are not so sure.) Most drugs are "proven" based on observational studies; indeed, pharmaceutical companies often seem to be doing huge studies on our population. Also, many drugs are used off label without the studies to back up off label use. Most of us on the MP recognize that the MP is an experimental approach. I always use that language when I am talking to someone and telling them what I am doing.

Hi Sheesh,
A couple of things came up for me after reading your reply. For me, personally, where it becomes uncomfortable is that although deeply interested in his studies, Dr. Marshall is not an MD. Now, that's not to say that there aren't many researchers who know more than MDs or MDs who are dangerous, but researchers are limited from enacting protocols because of their lack of practical training and every MD has to at least go through a training wherein they are responsible to governing bodies if they are practicing.

It's true that the exact mechanisms of many drugs are unknown by patients, doctors and even the pharmaceutical companies. I don't think of the population here as being generally pro-drug as long as it's antiviral, but since I haven't taken those meds I might know less. Taking abx for long periods of time is not a light matter. It sounds like you're very well aware of that based on your own experience and that of others who you have seen try the protocol. I do think it's fair for people to wonder about the validity of undergoing his regimen when many doctors consider long-term abx use to be as hard on the body as chemo. And it is troubling that since this regimen is promoted by Trevor Marshall, that he should be anything other than transparent about what his thinking is and what patient experiences are. It's a little frightening to me to hear that organ-failure-type symptoms are not uncommon or have occurred at all on the protocol. I don't think it means that his protocol won't work for many or some, but anyone promoting something with that as a possible side effect (esp. if they are a researcher or MD) would be under a microscope. It's very scary to me to hear/read about common patient experiences that are so severe without any cohesive clinical observation. Drug trials end b/c of just a few of the scenarios you described.

It sounds like he's effectively shot himself in the foot by removing members from his site/group. Everyone on this board, so far as I can tell, has nothing good to say about groups, institutions or practitioners who are secretive or who censor questions. Unfortunately, because this protocol has not been researched as other drug protocols have, there really is no coherent way to gather safety data and track progress. I think all CFS/ME patients are dealing with the frustrations of a lack of a defined cohort, and therefore, a way to measure treatment progress.

However, it doesn't make Marshall an underdog that he's not accredited to be involved in trials or in diagnostics and treatment; some would say it just makes him dangerous. I find it unfortunate that he reacts to questions as though he is the underdog--thereby making many inquisitions a personal attack--which I don't believe they are.

In terms of the Vitamin D industry's pull, I'm not certain there is one, though one may be building. Prior to a few years ago, there was very little interest in D supplementation, and still to this day, it's not a money-maker. If anyone knows differently I'd like to hear, but as far as I can tell, it's one of the less expensive supplements on the market.

It concerns me too that patients have the ability to up their dosages according to what they would like to see in terms of progress. That system seems fraught with problems.

I do hear that you're feeling attacked, but I hear more concern coming from people over how serious of an undertaking the protocol is, how its side effects are sometimes grave, and that there isn't a medically licensed practitioner taking responsibility.

As I've said before, I don't know of people with CFS/ME who are against treating with abx but pro antivirals. There may be some though. I tend to think of everyone with this illness as wanting to get some real answers as to which infections (of all origins) they are struggling with instead of blind treatments (like when a CFS patient is given abx repeatedly for something that is viral, but the doctor won't test for the possibilities). I don't know how doctors treating with Marshall's protocol are testing (for bacteria and viruses?).

In terms of the thread title, I still am confounded by Marshall's statements pertaining to XMRV. His comments seemed to be clearly on the side of CFS/ME is bacterial and XMRV is incidental. Unfortunately for him, there is better evidence that the neuroimmune nature of the illness looks more like a retroviral infection than what he proposes his protocol treats. I don't see him as being out of business if XMRV turns out to be a viable problem for the CFS community; infections and immune problems will exist either way.

I do feel badly that so many people taxed with severe illness find themselves in the position of feeling targeted, misunderstood and having to speak for Marshall since he doesn't do it well himself. That seems like something a responsible person wouldn't do, especially if he understands the debilitating nature of these illnesses. And there are certainly many "ugly" personalities behind good work, and that's why having credentials and being under the umbrella of an organization is so important: so that one person's bias (we all have them) is not allowed to run the show.

 

[Sheesh!]

Taking abx for long periods of time is not a light matter.

No, I agree. And like The Road Back, abx on the MP are pulsed; they are generally not taken every day. According to Marshall and others (sorry no references), there is less of a concern about their long-term use when taken in this manner. Also, only specific types of abx are used on the MP. Taking abx as it is commonly prescribed is considered, on the MP, not a good thing at all. So no one that I know of takes abx use for a long period of time lightly. There's more, but you'd have to believe Marshall's theory behind antibiotic use, and given my experience, I do.

It's a little frightening to me to hear that organ-failure-type symptoms are not uncommon or have occurred at all on the protocol.

I don't know that organ-failure-type symptoms are common. The kidney failure that I am familiar with occurred when doctors took people off of the olmesartan when their labs were high, removing the protective nature of olmesartan.

Unfortunately, because this protocol has not been researched as other drug protocols have, there really is no coherent way to gather safety data and track progress.

Unfortunately, this is true for now; hopefully, the studies being conducted in China will help provide some data. For those of us who have chosen to do the MP it is a risk we have accepted. For people who are very sick, there will be an element of risk. Even without much risk, there will be the unpleasantness of what one must endure.

I find it unfortunate that he reacts to questions as though he is the underdog--thereby making many inquisitions a personal attack--which I don't believe they are.

Whether he is or he is not, it is unfortunate. I do not believe that most people who are inquiring are making personal attacks (and I don't know of anyone other than Marshall who takes inquiries personally), and it is unfortunate that the type of data that people are looking for is either non-existent or not made available (or at least not in a format that people would like).

In terms of the Vitamin D industry's pull, I'm not certain there is one, though one may be building. Prior to a few years ago, there was very little interest in D supplementation, and still to this day, it's not a money-maker. If anyone knows differently I'd like to hear, but as far as I can tell, it's one of the less expensive supplements on the market.

I haven't done a lot of research, but from what I've seen and heard, Vitamin D has been in the food supply for a long time. You can research policy issues related to D online. This is an interesting article for starters: http://www.cbc.ca/news/viewpoint/vp_strauss/20080213.html

It concerns me too that patients have the ability to up their dosages according to what they would like to see in terms of progress. That system seems fraught with problems.

Given that people's own experience of intolerable is their own and that except for instances where lab work provides a guide, there is no way to standardize the treatment at this point--at least not in the way one takes, say, cholesterol medication. I doubt it will ever be able to be standardized in that way. Guidelines are provide, and people are encouraged to go slowly. When volunteers notice that people are exceeding the minimal guidelines for ramping or adding abx when their D levels are not in the correct range, they are told they are not following the protocol. It is up to the individual and his or her doctor to understand the protocol and do it as safely as possible; volunteers can only act as a back up by noting irregularities and providing an idea of how someone might be able to manage the immunopathology based on their own and others experiences, which are also in guideline form. Volunteers are needed as much because the protocol is very scary to do (facing increasing symptoms is a fright) and because anxiety levels and brain fog increases. Having people in one's corner makes the protocol more tolerable for some.

I hear more concern coming from people over how serious of an undertaking the protocol is, how its side effects are sometimes grave, and that there isn't a medically licensed practitioner taking responsibility.

See above. That some doctors do not closely follow their patients or become familiar enough with the warnings and order regular labs to make sure they are not getting out of control ought not be laid at the protocol's feet. When labs get out of control, which can correspond with IP strong enough to send some people to the emergency room, people on the MP may be at the mercy of emergency room doctors who know nothing of the protocol. No matter how often people are warned, there are some people who are just determined to go quickly (or perhaps are too brain fogged to comprehend that they are getting themselves into trouble), and there will always be people who are so sick that an extreme reaction is possible. People cannot do the protocol without a doctor writing their scripts. If they are, then they are doing it illegally. I've never heard of anyone doing the MP without doctor's care of some sort.

I don't know how doctors treating with Marshall's protocol are testing (for bacteria and viruses?).

Most of the bacteria targeted by the MP (L forms) are difficult to detect and will not be able to be detected by what is available in doctors' offices. (Similar to how a number of the bio-markers of CFS patients that could be found in research labs could not be picked up in a doctor's office.) For the longest time, they were theorized (similar to how the existence of an atom was once a theory). They are near impossible to culture outside of the host, though one research in Chapel Hill, I believe, is making progress. Some researchers still believe they don't exist simply because they have not been able to culture them.

I still am confounded by Marshall's statements pertaining to XMRV. His comments seemed to be clearly on the side of CFS/ME is bacterial and XMRV is incidental. Unfortunately for him, there is better evidence that the neuroimmune nature of the illness looks more like a retroviral infection than what he proposes his protocol treats.

Marshall thinks all viruses are at the scene of the crime, and if a person's immune system were truly healthy, the person would be able to handle the virus. Of course, it is now known that EBV seriously down regulates the immune system and the Lyme bacteria down regulates it even more. However, there are plenty of people who are exposed to EBV and Lyme who do not develop chronic illness, who go through a period of illness and yet recover. Marshall believes his explanation--that the bacterial load carried determines whether people's immune systems are up to the task--explains this phenomena. (At least this is how I understand what he is talking about.)

I do feel badly that so many people taxed with severe illness find themselves in the position of feeling targeted, misunderstood and having to speak for Marshall since he doesn't do it well himself.... And there are certainly many "ugly" personalities behind good work, and that's why having credentials and being under the umbrella of an organization is so important: so that one person's bias (we all have them) is not allowed to run the show.

I understand your perspective. However, it would be the same no matter what protocol I was on. That is, when posting, I'd be responding to questions about whatever protocol I was on. About credentials, I will say this: throughout the years many discoveries that have broken through long-held beliefs or the status quo were made by people who were not "credentialed." That's not even getting at what one would need to have to be credentialed to do what Marshall is doing. Obviously, I and others who have chosen to do the MP are less concerned about this than some or even most. The MP is not for everyone.


To answer the question about my diagnosis, like many people diagnosed with CFS, I've been diagnosed with a lot of other conditions too: Fibro, MCS, Sjogren's Syndrome, IBS, COPD, hypermobility syndrome, rosacea, plantar faciitis, trigger fingers, etc.

Note that when on the Marshall Protocol and interacting with other people who are also on it, one of the things someone notices over time is how many symptoms we have in common with people who have other chronic illness labels. Something that might not be so readily apparent if a person is following just CFS and Fibro sites. The idea that a unique set of conditions in each individual--their own pea soup (bacteria and viral)--is what makes up clusters of symptoms that end up with labels. Meaning, if I have more of this and that and you have more of the other thing and something else, and you don't have these particular strains and I don't have those particular strains, then we end up with different diagnosis. What does not change is how bacteria, aided often times by viruses, take over the immune system and leads to chronic illness. While we might prefer to follow people with CFS if we have CFS, my friend with Sarc can give me pointers on how to manage many of my symptoms. Sick is sick for the most part usually leading to sicker. Of course, there might be some special considerations given the type of illness (say Parkinson's or ALS or lungs seriously damaged by Sarc), but for the most part, many of us have a host of overlapping symptoms. This becomes even clearer as people start to have immunopathology. It is then you realize--when you see all the neuro immunopathology--that most people's brains are affected. We people with CFS are not in the minority when it comes to that.

I hope that makes sense.

 

[fresh_eyes]

This is actually turning into a really good discussion that is shedding a lot of light for me on Marshall, his protocol, and the experiences of the MP community. Thanks guys. Yay for open dialogue! I have to say I find myself feeling quite concerned and protective of those on the protocol, and wishing it was much more transparent and closely supervised by MDs, to reduce the substantial risks mentioned by sheesh.

I hope we're on the cusp of a new era where there's a solid scientific understanding of these mysterious diseases and we no longer have to "believe in" a certain mechanism and/or treatment for CFS.

 

[Sheesh!]

Metagenome

While I, too, would like solid scientific understanding (in the way that most people seem to prefer), that may be a long time coming. I hope not. Also how our metagenome works in full is essentially imponderable and may always be.

What goes for solid scientific understanding for various treatments in mainstream science--mostly purely palliation of symptoms--does not impress me at this time. Observational studies without molecular modeling--most of what accounts for drug studies that people rely on today--appears to be mostly a lot of guess work to me. For example, scientists find out that a particular enzyme is being over produced in a particular illness and they set about to discover how to block the enzyme production. How any one trusts most of the science behind most medicines given all the recalls makes me pause. I don't happen to trust them--to each their own in that regard.

I had extremely high cholesterol and I would not take cholesterol medication despite being seen as non-compliant because not only did I not trust the studies but I also did not trust that cholesterol was the problem. As far as I was concerned, it was a symptom. All of us know the frustration of having our symptoms clustered into different disorders and being given palliative drugs for each. Well, I would not add to the frustration of that a willingness to take so many drugs without a clearer understanding of why it would make sense for me to take them--other than a study that says that people feel better. Since my health issue is related to the operation of my immune system--I was fully convinced of that prior to Marshall and did not buy into the idea that my immune system was simply over reacting or genetically dysregulated--, I want to see a good explanation of how the immune system works and why the particular drug will help me. Marshall comes as close to describing that and making sense of life long symptoms than anyone I've seen.

Of course, I would love for rigorous observational studies to be in place as well, taking into consideration that the drugs cannot be administered in the standard way (take this amount this many times a day period) and no real controlled study could be made that included a placebo unless you intentionally made people feel worse so they would not know they were getting a placebo, and then it would not be a placebo anyways. So a new way of conceptualizing the best way to study treatments would need to be employed. There are, at least, discussions underway in the scientific community about the limitations of what makes up the best practices that most people find to be acceptable today.

While I do believe that Marshall is on to something--at the cutting edge of science when it comes to the role of the VDR (vitamin D receptor) on the immune system and understanding how olmesartan helps improve the function of the VDR--as far as treatment goes, some on the site believe we are in the Model T stage, if you were to compare the treatment to the evolution of transportation. I think we are at the horse and buggy stage, which is still better than trying to pull the cart yourself.

The science, while supporting the treatment enough to convince some to try the protocol, is seriously complicated by the existence of our metagenome. It is my hope that more institutions will study the MP and that as they study it, they will help refine it, finding treatment modalities that will make enduring immunopathology less difficult and boost recovery while insuring the efficacy of the VDR. All that will take time.

I can't imagine that anyone would want to instantly turn on the immune system and make it work 100%. If that were to happen, very sick people would be overwhelmed by their immune system's response to the L forms in the body and a lot of people would die. One of the reasons olmesartan is so well suited to the task of upregulating the VDR in a more controlled--and yet, from an experiential perspective, scary--way is that it only partially docks with the VDR, providing a slow process, which is something that sick people need. For those who are very sick, the process may not feel so slow and yet it takes a long time and there are the restrictions of the protocol to contend with as well, making a not so desirable situation even less desirable. The immune system may appear to awake from a very deep slumber and chase some of us AT TIMES (sometimes for long periods) like a scary monster from our childhood nightmares even if we follow the guidelines completely. And we members warn people of this potentiality--at least we do now--on the MP. We try to get people to move slowly so the immune system does not pick up speed and make the experience intolerable.

Now, if the neurobiological aspects of CFS and some other illness require additional help to get them up and running correctly in some or most, I would not be surprised, but I'm not counting on it.

 

[Katie]

Can I ask you Sheesh as someone who finds the MP useful what your take is on XMRV? This is just out of personal interest, nothing scientific behind it.

 

[Sheesh!]

My thoughts at the moment regarding XMRV

I want to start off by saying that I believe I was born with a heavy load of L forms. I was premature and I came into the world with ear aches and allergies. I think I was pretty much sunk before I even got started, and then my post-natal exposures, which would include both viral and bacterial, made matters worse.

I think like some I have seen discussing this new discovery, including some scientists (see the CFSAC videos), that we will find that CFS is a combination of factors: viruses and L forms.

I leave open the possibility that one or more viruses are particularly detrimental to the immune system making recovery for those born with a heavy load or having accumulated a heavier load of L forms more susceptible, and also resulting in a heavier viral load. (BTW, there is growing research that indicates that bacteria turn on and off genes and so gene expression does not necessarily mean that genetics cause illness. Gene expression may very well be another symptom of illness.)

For example, from what I understand, the AIDS virus blocks the functioning of the VDR. That's pretty serious and perhaps why the down turn in people's health is so much quicker with that virus than others. Note that there are some obvious conditions that make one contracting AIDS, or even possibly showing positive to exposure to the virus, more likely. When you think of some of the conditions, the role of bacteria and antibiotics as normally prescribed makes sense. For example, previous instances of STDs increases one's chances and I do not think that that is merely the result of behavior. (Please do not get upset at this choice of a potential pre-existing condition. A person like me, who has never had an STD, would probably have similar chances of getting HIV and my pre-existing condition would not have been as obvious and was, of course, doubted by doctors 20 years ago. Like the otherwise healthy people who die of H1N1, I would have been seen as a healthy hypochrondriac had I contracted AIDS back then. Indeed, I know of someone who one time shared a needle with a group of friends--the only time he used a needle--and he was the only person among those present who got HIV--aside of course from the person who already had an undiagnosed case of it. Also, the innate immune system is not fully functioning in newborns and so this is why using blood from donors is of particular concern for newborns. The topic is very complicated and I don't mean to be insensitive in trying to describe my understanding of the mechanisms involved.)

I think, like EBV and Lyme, there are other significant viruses out there that otherwise burden people with chronic illness who might have otherwise made it through their lives without being chronically ill until old age. PIV, another retrovirus (good luck in finding scientific references to it), may be one of those viruses that place a substantial burden, particularly on people with a CFS diagnosis and symptoms starting in childhood.

Marshall is betting, based on what he has read to date, that the XMRV virus will not be in the category of the AIDS virus. I am inclined to agree.

He may be wrong. I am always open to being wrong. And believe it or not I've seen Marshall admit to being wrong on the site.

I believe we have more to fear from Vitamin D supplementation and other life-style changes. (That would be a long discussion in and of itself--the changes in the 20th and 21st centuries that are contributing to chronic illness picking up speed.)

Life in many ways seems like one big crap shoot and I can only be responsible for assessing what I can assess and then making my best guess as to what is best for myself.

I would like to say HERE that I am grateful for Dr. Marshall even if there ends up being some long-term negative consequence to my doing the MP instead of the long-term positive consequence that I am betting on. My quality of life has been improved immeasurably and I have found the challenge of the MP to be one of the greatest spiritual challenges of my lifetime. If I were to die tomorrow, what I have chosen to put myself through would have been worth it. That may sound like a rationalization to some. It is not, and all you have is my word for it.

 

[lebowski]

animal studies

hi sheesh ,

sorry if u already mentioned in ur posts , i couldnt read all of them , i wonder if any animal study has been made of the mp ? i think rat , mouse studies r not that much expensive to make to validate mp ..

and do u know any other scientist thinking that vit d is not essential for normal immune functioning , or lack of it improves it ?..

and i hope u dont think that every science person who thinks vit d is important for human body is directly or indirectly in the vit d industry ..

 

[Katie]

I want to start off by saying that I believe I was born with a heavy load of L forms. I was premature and I came into the world with ear aches and allergies. I think I was pretty much sunk before I even got started, and then my post-natal exposures, which would include both viral and bacterial, made matters worse.

I think like some I have seen discussing this new discovery, including some scientists (see the CFSAC videos), that we will find that CFS is a combination of factors: viruses and L forms.

I leave open the possibility that one or more viruses are particularly detrimental to the immune system making recovery for those born with a heavy load or having accumulated a heavier load of L forms more susceptible, and also resulting in a heavier viral load. (BTW, there is growing research that indicates that bacteria turn on and off genes and so gene expression does not necessarily mean that genetics cause illness. Gene expression may very well be another symptom of illness.)

For example, from what I understand, the AIDS virus blocks the functioning of the VDR. That's pretty serious and perhaps why the down turn in people's health is so much quicker with that virus than others. Note that there are conditions that make one contracting AIDS or even possibly showing positive to exposure to the virus. When you think of some of the conditions, the role of bacteria and antibiotics as normally prescribed makes sense. For example, previous instances of STDs increases one's chances and I do not think that that is merely the result of behavior. (Please do not get upset at this choice of a potential pre-existing condition. A person like me, who has never had an STD, would probably have similar chances of getting HIV. Indeed, I know of someone who one time shared a needle with a group of friends--the only time he used a needle--and he was the only person among those present who got HIV--aside of course from the person who already had an undiagnosed case of it. Also, the innate immune system is not fully functioning in newborns and so this is why using blood from donors is of particular concern for newborns. The topic is very complicated and I don't mean to be insensitive in trying to describe my understanding of the mechanisms involved.)

I think, like EBV and Lyme, there are other significant viruses out there that otherwise burden people with chronic illness who might have otherwise made it through their lives without being chronically ill until old age. PIV may be one of those viruses that place a substantial burden, particularly on people with a CFS diagnosis and symptoms starting in childhood.

Marshall is betting, based on what he has read to date, that the XMRV virus will not be in the category of the AIDS virus. I am inclined to agree.

He may be wrong. I am always open to being wrong.

I believe we have more to fear from Vitamin D supplementation and other life-style changes. (That would be a long discussion in and of itself--the changes in the 20th and 21st centuries that are contributing to chronic illness picking up speed.)

Life in many ways seems like one big crap shoot and I can only be responsible for assessing what I can assess and then making my best guess as to what is best for myself.

Thanks for taking your time to answer. I had to do a fair bit of googling to work out some of what you meant, my interest lies in politics and political theory, not science or medicine. I'm always a step behind when discussing medical issues, especially in the UK where ME/CFS is not as well investigated so you do not become accustomed to knowing information about your illness that you should, you are just grateful you don't get labelled as a malingerer and be quiet. Excuses aside now.

It sounds like you have a rough entry into this world. It is interesting to read what you attribute to being born with. The XMRV has lead me to theorise that the mostly likely way I developed ME (should XMRV prove to be the cause) is that it was passed down to me in utero and a combination of puberty, vaccination and mono-like flu sent it into overdrive.

I agree with your sentence which discusses bacteria's ability to turn genes on and off, I have a view that both viruses and bacteria have the capacity to trigger predispositions to certain diseases, for example a family member was diagnosed as diabetic and when in hospital was found to have an infection, this was believed to have 'triggered' the gene causing his pancreas to die. This isn't certain, but it's not ruled out.

I have to say that my current level of knowledge prevents me from interpreting the analogy you were making as you wrote about AIDS, I think this is due to my lack of understanding, someone else might understand.

I think the difference between many viruses found in people with ME/CFS such as the Human Herpes Virus, Epstien Barr Virus etc and XMRV is the way that XMRV behaves. My friend on another forum wrote this which I'm shamelessly using here as I cannot think up my own version

A retrovirus is much sneakier. It is made of RNA and it's a bit like the cuckoo in the nest. First it tricks your body into changing it from a virus into something that looks like part of your own DNA. Then it hides in your DNA so that each time your cell reproduces, the retrovirus DNA gets reproduced with it. And all the time the new DNA is quietly making RNA which is making the proteins to make new viruses.

Retroviruses are harder to detect and harder to kill. For example, HIV is a retrovirus.

This to me sets XMRV apart from grouping it with traditional viruses which replicate inside cells to kill them and then spread which the body can mount a more obvious and substantial defence against. XMRV is a totally different animal and fills in a lot of gaps in my personal ME experience which is much 'neater' compared to your case as I don't have multiple problems or even common comorbid issues such as fibromyalgia syndrome or PCOS, I have ME and that's it.

XMRV is a cousin of HIV, this is known already, just its associations with other illnesses is unknown. HIV is classes as a lentiretrovirus whereas XMRV is a gammaretrovirus and is much simpler. I don't think Mr Marshall has a choice in whether it is classed with HIV, but rather XMRV's association with ME/CFS.

I won't debate you on Vitamin D as I'm not well informed on the topic. I do feel we are getting 'sicker' as a species but that there are thousands of variables to take into account since the Industrial Revolution and the lack of research into environmental factors that cause illnesses such as cancer or sheep dip syndrome.


I hope you have a healthy as possible winter, Katie

 

[Sheesh!]

i wonder if any animal study has been made of the mp ? i think rat, mouse studies r not that much expensive to make to validate mp ..

According to Marshall and perhaps others (like you, perhaps, I have trouble keeping up with all the research), rats do not have a VDR. He believes that the VDR is essentially unique to humans. (It may be the one thing that finally separates us from other species.) So if he is correct, doing animal studies would not be valuable.

and do u know any other scientist thinking that vit d is not essential for normal immune functioning, or lack of it improves it ?..

Marshall believes the body produces all the vitamin D that it needs (from both the sun via the skin and through out eyes via bright lights, including non-natural light).

What its role is in the body, I am not certain, but given the bandwagon that modern medicine seems to be on, researching this--that is, trying to separate the Vit D believers, who have research lasting for less than 20 years, from those who are doing studies that might actually shed some real light on the matter--is difficult for my brain to do.

Perhaps D is sometimes meant to be called into play when we are having an acute reaction to help palliate our symptoms. Too much, however, suppresses the immune system, as it is a seco-steroid. (You will find that information--that it is a seco-steroid--in the literature that is beyond Marshall). Because it is a seco-steroid that suppresses the immune system when there is too much in the body, Marshall believes we ought to leave Vit D production to our bodies own mechanisms.

At the very least, Marshall (and I believe others) see the VDR as a master hormone, affecting the regulation of other hormones, and so D, just the amount the body needs and no more, may be involved in hormone regulation.

and i hope u dont think that every science person who thinks vit d is important for human body is directly or indirectly in the vit d industry ..

No of course not. I'm not a conspiracy theorist just a realist.

Also, I want to make it known that I really cannot speak for Marshall and I could be wrong about my characterizations. There are many people on the site who understand the science better than I do.

 

[dannybex]

I'm glad you're feeling better Sheesh, truly, but I guess we'll have to agree to disagree on several things.

And again, perhaps this all should be moved to a new 'MP' thread?

Firstly, I find it disturbing, and just not correct, that the MP always refers to vitamin d as 'immunosupressive'. Perhaps it can be when taken to an extreme, but it's my understanding that vitamin d (cholecalciferol) regulates the immune system...it doesn't suppress it. There have been many many studies that back this up. Here's one that lists some of them:

http://jn.nutrition.org/cgi/content/full/135/11/2739S

Secondly, I have to strongly disagree regarding the MP's theory that disease has increased because (in part) we're getting "too much" vitamin d, especially from food sources. Again, many, many studies (see above), studying many different diseases, show exactly the opposite...that vitamin d is beneficial and in general, we're not getting nearly enough. The argument that this single change may be responsible for the increase in diseases also ignores so many other factors (like the frankenfoods that take up 90% of our store shelves, the petrochemical-based fragrances that pervade the stores we shop in, not to mention many other environmental factors and exposures...which may ironically include all the petrochemicals in the sunscreens that have been overhyped by the media?)...

And finally, IMHO, this is way more than an 'l-form or viral' question. What Marshall, and many others leave out of the picture, is what I just alluded to: environmental toxins like pesticides, fungicids, heavy metals, molds, physical and long-term emotional stressors, etc.. It's not a one-size fits all illness.

Just my two cents, but they seem like they can't see the big picture...can't see the forest for the trees.

I could go on, but I'll shut up. Got to go lie down and crash for a bit.

d.

 

[oerganix]

Thank you Sheesh...

for your patience with the hostile tone this thread started out with. I also have not mentioned my MP experience because of the ignorant things people who know nothing of it have heaped upon me under other circumstances.

I didn't try it because I was anymore desperate than anyone else with this illness. I tried it because after I read up on it for over 3 weeks it made sense. And, most importantly, my doctor was willing to prescribe for me and got Medicare to go along. He wasn't interested in learning much and I had to do all the thinking, planning, etc., but he was willing to let me try it without disdaining me. I don't think I'm any stupider than anyone else who's tried some treatment to see if it would help. I used to have an IQ of 140, was a member of MENSA, and have recently been tested at 120 IQ. Needless to say, I don't appreciate being treated as if I'm too dumb to make these decisions on my own, especially by people who are uninformed on the subject.

And the MP certainly is no more "unscientific" than amygdala retraining or any other woo-woo treatment.

Tony, please keep your rock band from Australia - I'd rather have Dr. Marshall. Yes, he is a Dr., as in PhD, and never tries to let on that he is an MD. Anyone who has earned a PhD is entitled to be called Dr. I'd like to remind you of another Dr. Marshall from Australia who was also ridiculed and reviled for his research that eventually turned out to be spot on - that E. pylori bacteria is the cause of stomach ulcers. Seems he eventually got a Nobel prize for this discovery. And, for what it's worth, Trevor Marshall went to university with this other Marshall. Part of what Trevor Marshall has been able to do with his Electrial Engineering degree has to do with electron microscope imaging of the L-form bacteria he thinks is responsible for so many illnesses. (Sort of like the XMRV discovery that it may, possibly, be involved in many illnesses.) Part of what he feels he has discovered is that this cell-wall deficient bacteria inserts itself into immune cells where they cannot be killed by the immune system. Sound familiar? In fact, much of what he believes parallels some of the findings about the behavior of XMRV. When I first started reading about it, I wondered if Trevor Marshall had actually photographed such a virus. The line between some of these organisms being bacteria or virus or virion or something else has been blurred with micron photography.

He may be wrong, be he is not a charlatan. He is certainly ego-driven and arrogant. Seems like it takes a big ego to do this sort of work. To accuse him of being in it for the money is just more ignorance. There is absolutely no proof of this allegation.

I absolutely agree that Vitamin D is the current big money making "discovery" of the supplement industry and most, maybe all, of the "research" claiming it's wonders is paid for by that industry and is mostly bogus. If you read the labels on food, it is routinely added to almost everything. Avoiding it was a big problem while on the MP because it is everywhere. Nobody in America is vitamin D deficient.

I was on the MP for over 2 years, got as far as Phase 3. (For those of you who made fun of this terminology - sorry, you just don't get it because you haven't educated yourself about what you are criticizing before criticizing and making fun of it.)

I actually have started and stopped the MP twice. The first time got me well enough to travel to Thailand and take an intensive 7 week course in teaching English as a foreign language, and to stay there and work for 6 months. I eventually returned for reasons unrelated to my health. I wasn't 100%, more like 60%, (up from about 20%) but I was able to work for the first time in decades, while living in a culture where I could pay someone else to do almost everything else for me.

After I returned I slowly got worse again so I went back on the MP and increased my well being for a time. But I got to the point where I wasn't getting any better and the downside was not worth it to me anymore. I wanted to leave the US and find a cheaper, warmer, closer to the Equator place to live. I now live in Nicaragua where I am not a pauper and routine health care is "free". Not that they know anything more about ME/CFS here, but nothing was available to me in the US, either.

The MP helped me tremendously with pain, muscle spasms and the weight gain I have experienced due to hormonal dysregulation. It helped a lot with the neuro symptoms of "ants" running up and down my legs, buzzing and burning in my extremities, etc, and somewhat with "brain fog". Improved my carpal tunnel syndrome a great deal.

It completely cured my MCS and sinusitus, and greatly improved my allergies to dust and mold. Candida disappeared and I can now eat BREAD!

It did not help much with fatigue, and I felt the olmesarten lowering my blood pressure was a contributing factor to that, but I don't know for sure.

My intense back pain and muscle spasms completely disappeared and that added a lot to my quality of life. I had no more ear infections and strep throats, which I have a history of having almost constantly.

I also felt that the emphasis on sunlight was overdone, as I've never been overstimulated by it. I think what he may have missed, at least in CFS, is that we are subject to some kind of problem with CNS overstimulation, not always light. For me, it is noise and movement. Loud noise, especially with a lot of movement, makes me feel faint, dizzy, nauseous and frantic.

The contention that the MP has caused harm is also unsupported. How can anyone say the protocol was the culprit when the person was already so sick? People die and sicken due to prescriptions and allopathic medicine every day, so to assume that problems of those on the MP are purely due to the MP is silly at best.

What's my take on XMRV? Verrrrry interesting! I hope it turns out to be the smoking gun. It will be awhile before we know. I was already interested in the viral angle, but the research available was so contradictary and uneven that I wasn't ready, nor was I able, to go that route. I wasn't willing to subject my liver and kidneys to the side affects of antiviral medications without some indication of a benefit. My EBV titers were once tested, came out "600 times normal", but my doctor said everyone has these antibodies, which turns out to be correct. The fact that only 3.7% of "normals" have this is a big difference from what has gone before.

Bottom line, the MP got me from about 20% of normal function to about 60%, if and when I am in an environment where I can pay for help with the rest of life. I am declining again and thinking of doing another stint of MP, perhaps to get me in better shape for doing antivirals in the future.

 

[Sheesh!]

I think the difference between many viruses found in people with ME/CFS such as the Human Herpes Virus, Epstien Barr Virus etc and XMRV is the way that XMRV behaves....

XMRV is a cousin of HIV, this is known already, just its associations with other illnesses is unknown. HIV is classes as a lentiretrovirus whereas XMRV is a gammaretrovirus and is much simpler. I don't think Mr Marshall has a choice in whether it is classed with HIV, but rather XMRV's association with ME/CFS.

Katie, I agree. I think the point is that not all retro viruses have as negative impact on the system as the HIV despite their sneaky abilities. One type of retrovirus in an animal may have little to no affect on that species and yet have a disastrous affect on another. There is much to learn.

I do feel we are getting 'sicker' as a species but that there are thousands of variables to take into account since the Industrial Revolution and the lack of research into environmental factors that cause illnesses such as cancer or sheep dip syndrome.

I agree there are many more variables than overproduction of Vitamin D. While Marshall appears to think that a healthy immune system would be able to handle the assaults of modern life, I am not so sure. In particular, I am very concerned about the amounts of chemicals being pumped into our environment since WWII and the impact of that on our genetic make up and susceptibility. Even if the MP makes me "well," you better believe I will still be trying to lead an environmental clean life to the extent that I can without withdrawing completely from society (as if that were possible). I know I will probably make choices, however, that will shorten my life given the choices available.

I hope you also have as have a healthy a winter as possible.

 

[Sheesh!]

t's my understanding that vitamin d (cholecalciferol) regulates the immune system...it doesn't suppress it. There have been many many studies that back this up.

Yes there are researchers who believe their outcomes support that hypothesis.

[W]e're not getting nearly enough.

Yes, there are people who draw that conclusion when the obverse could be true: vitamin levels, given all that we get in our foods, go down in people who have a high level of L forms because it is a symptom of the disease caused by the L forms. That you don't think this is true and believe the science you read is fine with me. So we disagree.

The argument that this single change may be responsible for the increase in diseases also ignores so many other factors (like the frankenfoods that take up 90% of our store shelves, the petrochemical-based fragrances that pervade the stores we shop in, not to mention many other environmental factors and exposures...which may ironically include all the petrochemicals in the sunscreens that have been overhyped by the media?)...

I was not making that argument. In fact, I depart from Marshall in that respect. Research does show that the nutrient value of foods is severely degraded and I believe that many other factors that have been introduced into our environment can and probably do contribute our failing health.

And finally, IMHO, this is way more than an 'l-form or viral' question. What Marshall, and many others leave out of the picture, is what I just alluded to: environmental toxins like pesticides, fungicids, heavy metals, molds, physical and long-term emotional stressors, etc.. It's not a one-size fits all illness.

I understand your concerns and share them. Only time will tell if Marshall is right. In the meantime, I believe we also need to focus effort on the degradation of the environment and our food supplies if we are to survive as a species.

Just my two cents, but they seem like they can't see the big picture...can't see the forest for the trees.

Since we are agreeing to disagree about Vitamin D, my thoughts are that most can't even see the trees. I happen to think Marshall sees some of them. Perhaps with work on all fronts we will see the most significant some day and actually commit to doing something about the ever expanding forest.

I could go on, but I'll shut up. Got to go lie down and crash for a bit.

d.

I know the feeling. Trying to post anywhere about the MP is very taxing for someone on the MP, as there are generally numerous questions and objections. (Back and forth, back and forth, and so on.)

 

[Sheesh!]

I didn't try it because I was anymore desperate than anyone else with this illness. I tried it because after I read up on it for over 3 weeks it made sense. And, most importantly, my doctor was willing to prescribe for me and got Medicare to go along. He wasn't interested in learning much and I had to do all the thinking, planning, etc., but he was willing to let me try it without disdaining me. I don't think I'm any stupider than anyone else who's tried some treatment to see if it would help. I used to have an IQ of 140, was a member of MENSA, and have recently been tested at 120 IQ. Needless to say, I don't appreciate being treated as if I'm too dumb to make these decisions on my own, especially by people who are uninformed on the subject.

I feel your pain.

And the MP certainly is no more "unscientific" than amygdala retraining or any other woo-woo treatment.

I hear that. And CBT as the answer? Please. Yes, it may help some a lot and may help a lot some. Much has to do with where a person is with the illness and perhaps their own pea soup of illness.

He may be wrong, but he is not a charlatan. He is certainly ego-driven and arrogant. Seems like it takes a big ego to do this sort of work. To accuse him of being in it for the money is just more ignorance. There is absolutely no proof of this allegation.

Well, darn, oreganix. You have just proven that we are a cult! We've all been schooled into accepting his rather out sized ego and unprofessional displays. Not. We accept this because it is not worth the energy to not accept it. Ever hear of the serenity prayer?

I was on the MP for over 2 years, got as far as Phase 3. (For those of you who made fun of this terminology - sorry, you just don't get it because you haven't educated yourself about what you are criticizing before criticizing and making fun of it.)

If I had tried to do the MP as it was originally written, I would have had to drop out. The MP has changed over time due to the research. The phases ought to probably be renamed into one abx, two abx, and three abx, as people need not go through in a straightforward fashion. The new approach may make the MP less burdensome to you, and the focus is more on olmesartan. If you have not looked at the phase 1 guidelines, you might want to, and then go to the CureMyTh1 site and ask members what the new guidelines might mean to how you might feel on the MP today. I'd be interested in people's responses myself.

It did not help much with fatigue, and I felt the olmesarten lowering my blood pressure was a contributing factor to that, but I don't know for sure.

As you know from having been on the MP, most people on the MP have significant fatigue as a result of immunopathology.

When I took a break after nearly out of control immunopathology lasting for far more than the first year, I discovered that I went from being able to sit in my recliner for up to 12 hours (prior to the MP I was essentially bedridden and could not spend time in the recliner) a day to being able to get up and do stuff for about six to 12 hours a day. This was over a two month period with no real crashing other than my energy being limited to that amount--I attribute this to some incredible CWD killing in that early wildly out of control immune response (something I would not recommend anyone trying at home). Going back on the MP was one of the hardest things I've made myself do, as I knew I would be faced with the fatigue.

It makes sense that it might take longer for our fatigue to lift (and maybe it doesn't ... maybe it just all depends on the amount of fatigue you started with given the diagnosis) given how it is a HUGE symptom for us.

I'm betting on that and what I saw on break, which is why I am continuing.

I also felt that the emphasis on sunlight was overdone, as I've never been overstimulated by it. I think what he may have missed, at least in CFS, is that we are subject to some kind of problem with CNS overstimulation, not always light. For me, it is noise and movement. Loud noise, especially with a lot of movement, makes me feel faint, dizzy, nauseous and frantic.

It is noted that not all people may be light sensitive or that it may have as much impact on some as to others. As for me I had light sensitivity since childhood and had perhaps one of the worst responses to light they've recorded on the MP. And so Marshall's warnings could not be more on target. In fact, it was much worse than I would have ever suspected. So people must be prepared for long-haul light restriction if that is their lot in this gamble we call life. (I too share/shared your other symptoms in regard to noise and movement.)

People die and sicken due to prescriptions and allopathic medicine every day, so to assume that problems of those on the MP are purely due to the MP is silly at best.

Good point. It is difficult to keep up with all the stuff that is thrown at the MP. (Yes, that's my perception and I don't even begin to understand where it comes from.)

I am declining again and thinking of doing another stint of MP, perhaps to get me in better shape for doing antivirals in the future.

Good luck!!!

 

[lebowski]

" Nobody in America is vitamin D deficient"

oh really ? .. and u r so certain of that because marshall said so ??



" Yes, he is a Dr., as in PhD, and never tries to let on that he is an MD. Anyone who has earned a PhD is entitled to be called Dr. I'd like to remind you of another Dr. Marshall from Australia who was also ridiculed and reviled for his research that eventually turned out to be spot on - that E. pylori bacteria is the cause of stomach ulcers. Seems he eventually got a Nobel prize for this discovery. And, for what it's worth, Trevor Marshall went to university with this other Marshall"

very good reasoning of using md. in the medical field .. he went to same uni. with the nobel winning marshall so he can comfortably use md. .. and maybe because the other one was ridiculed etc. .. look u have a mensa membership u r risking here : )


i know of one thing about vit d and i d be very glad if MR marshall could comment on .. human body do not start to save vit d untill it is fed up to 50 ug-something ,sorry i forgot the real thing but it was 50 something .. and uses the amount given immediately up to this level .. in this case mr marshall must have found a way which is better than normal human functioning ..
and the historical vit d consumption of human beings were unquestionably much higher than todays standards , eating much more fat instead of sugars , working outdoors , living in much more sunny parts of the world ..
i mean our body is not evolved with this no or very little vit d situation .. it s like saying " hey lets dont use o2 and see if our body makes it better that way " .. no not low , if i remember correct he uses special sunglasses to block the sunshine coming to the eye , so he is tring to keep it near zero .. i say , if the immune system could work better that way , body would start saving the vit d immediately and not use it .. marshall must be better than evolution to be correct about his vit d idea ..

and the vit d is the cheapest supplement where i live .. that supplement industry must also be very stupid to support the cheapest item in the market ..