• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Mold, Dr. Cheney and ME/CFS

G

Gerwyn

Guest
XMRV was discovered in prostate cancer tumors, not by the human genome project, which would only have discovered universal retroviruses inserted into all our genomes and vertically inherited, Gerwyn. There may well be other retroviruses lurking that haven't yet been identified that are communicable in some small portion of the population.

Save this post, Gerwyn. Talk to you in a year or ten. Clearly you're not interested in evidence-based medicine, but clearly some of us are.

If mods want to move this somewhere else go ahead but Lisa's point was radical mold avoidance allowed her to tolerate antivirals she couldn't before. Since some folks are jumping on the idea of taking HAART therapy for XMRV...and one on this board couldn't tolerate the HAART therapy even though it helped her...maybe it's relevant. I think it is.

But this is just why I don't post anymore. Snide, combative, snippy, angry, biased answers (like yours).

So I will go back to backchannel, where I try to learn and help.

Thanks again, Lisa.

Hope you're doing well, Danny.

I am interested in evidence based medicine your comments were not evidenced based in any way.i merely pointed that out.i struggle how you interpret that to be snide.you are wrong XMRV was initially discovered as a result of the human genome project.They found a sequence that they could not account for.HAART therapy is very likely to prove fatal for patients with ME. 30% ofpatients without mitochondrial damage sufferserious irepairable damage after three years.That is evidence based medicine.Mold sensitive genes is not!
 
G

Gerwyn

Guest
Wow, I went away from my thread for a couple of hours and suddenly a heated discussion has erupted!

This actually is EXACTLY the kind of discussion I'd like to see. Everyone's comments so far (and maybe especially Gerwyn's) are the ones that need to be discussed openly about this topic.

I'd much rather have someone voice criticisms or skepticism than to have everyone ignore the issue.

I have a whole lot of comments that I want to insert, and then will look forward to hearing everyone's responses.

It may be a few hours or days before I get a chance to do so though.

In the meantime, everyone, feel free to keep posing as many questions or comments about mold and its interactions with XMRV (or lack thereof) as you like. This is turning out to be the most intellectually stimulating discussion on the topic that I've had in quite a while.

Just please don't tear one another apart too much that no one is listening when I get back or (worse) that the thread gets deleted as some of my favorite ones on ProHealth used to.

My next posts will include specific comments on the possible relationship between XMRV and mold toxicity. Being able to have this kind of discussion (including critiques of the possibility) is precisely why I put this thread in the XMRV section, and so I would respectfully ask that it be kept here for the time being.

Be Back Soon!

Best, Lisa

if you can post any scientific evidence re the existence of mold sensitive genes i would be interested in seeing it.i,m not interested in comments i am interested in evidence otr at least a hypothesis based on objectively measurable observations
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Kellogg School of Management, Northwestern University, Marketing Department (consistently rated #1 in the country). My Ph.D. advisor was Dr. David Messick, a highly published social psychology researcher who spent most of his career in the psychology department at UC Santa Barbara before moving to Kellogg late in his career.

Unfortunately, my ability to work as an active academic scholar was taken away from me for more than a decade due to this illness. Hopefully my recovered health will allow me to move back to that work.

I'm happy to share my credentials, but that's not why anyone should listen to me. The substance of the discussion is what matters.

Contributing to this thread is not the only thing that I have to do with my time now. I am absolutely delighted to discuss any issues that anyone wants at whatever length they like, and I encourage them to be as ruthless as they like. Some other schools used to send their own Ph.D. candidates to my department in order to be grilled by my own professors, so I'm quite accustomed to participating in that kind of debate and find it quite intellectually stimulating.

However, I really must leave the thread again. Again, thanks to everyone for their comments.

Best, Lisa Petrison
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Thanks Lisa, for posting this info about mold. I've been taking it in with great interest and have my own story to add.

I have a friend who had CFS and is now in total remission from it, and has been for many years. He lived in Marin County back in the 70's, and was a very successful and brilliant computer wizard, involved in the beginnings of that industry here in the Bay Area. One day he had an accident with a lawnmower, which somehow ran over his foot and severely injured it. The foot became so badly infected that gangrene began to set in. He was hospitalized and given and choice of either amputation or, as he put it "enough antibiotics for a bull." He chose the antibiotics, which saved his leg but destroyed his life as he knew it. Not long after this, his immune system fell apart completely, (his T-cell count fell below 300), he developed severe allergies to the point of becoming a universal reactor, (what is now called MCS), and collapsed into what he called an exhausted "coma like sleep" for the next 5 years, during which time he was able to remain conscious for only 3-4 hours/day. Because there was at that time, back in the late 70's, very little information regarding his illness, he was left to figure it all out mostly on his own. He consulted with several of the more famous MCS doctors (Dr Rea in Texas and Dr Randolph in Chicago), and many brilliant alternative people (like Jeffrey Bland and others whose names I can't remember), but had only only limited success with any of the treatments he attempted... UNTIL he finally decided to completely give up all vestiges of his old life and move out to the desert, where he lived out of his car for most of the next fifteen years.

According to him, living in the desert, away from all pesticides, perfumes, toxins and molds, was the most significant part of his ultimate cure. He took A LOT of supplements--a list of about 40 at one point, and was especially fond of the Sunrider herbs, but he insisted that none of that worked as well as it did when he was in the desert. Upon each return to civilization, he would have a toxic backslide, and with each return back to the desert, he would find relief and renewal of his energy. It took many years and a lot of perseverance for him to get completely well, and there were a LOT of ups and downs on that journey, but the last time I spoke with him (in 2004), he told me he now has "a life that is very different than the one (he) had back in the early 90's," when I fist met him. He travels all over the world, stays in hotels, and gets away with eating mostly whatever he wants. He lives in Arizona when he isn't travelling and is finally able to live in a HOUSE.

He's been harping on me to get out of the Bay Area for years, as he thinks it saved his own life to do so. I can't imagine living out of my car in the desert, though I do know others who have done this with some limited success. But no one has done it AS successfully as this guy did.
 
G

Gerwyn

Guest
Kellogg School of Management, Northwestern University, Marketing Department (consistently rated #1 in the country). My Ph.D. advisor was Dr. David Messick, a highly published social psychology researcher who spent most of his career in the psychology department at UC Santa Barbara before moving to Kellogg late in his career.

Unfortunately, my ability to work as an active academic scholar was taken away from me for more than a decade due to this illness. Hopefully my recovered health will allow me to move back to that work.

I'm happy to share my credentials, but that's not why anyone should listen to me. The substance of the discussion is what matters.

Contributing to this thread is not the only thing that I have to do with my time now. I am absolutely delighted to discuss any issues that anyone wants at whatever length they like, and I encourage them to be as ruthless as they like. Some other schools used to send their own Ph.D. candidates to my department in order to be grilled by my own professors, so I'm quite accustomed to participating in that kind of debate and find it quite intellectually stimulating.

However, I really must leave the thread again. Again, thanks to everyone for their comments.

Best, Lisa Petrison

i dont mean to be rude but what has management got to do with science

I,m not sure what this has to do with science either Behaviourism is the antithesis of science.



David M. Messick

Emeritus Professor of Management and Organizations

Management and Organizations

B.A. 1961, Psychology, University of Delaware; M.A. 1964, Ph.D. 1965, Psychology, University of North Carolina

Academic Positions Held


Kellogg School of Management, Northwestern University,2007 to present
Emeritus Professor of Management and Organizations

Kellogg School of Management, Northwestern University, 1992 to 2007 Morris and Alice Kaplan Professor of Ethics and Decision in Management

University of California, Santa Barbara, 1964-1992
Professor of Psychology

Courses / Topics Taught
Ethical Decision Making
Individual and Group Behavior
Leadership
Ethics

I could however be completely wrong. Behavioual "science" generally does not use the scientific method and interprets observations in accordance to a strict paradigm specific perspective
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
The understanding and use of the scientific method is the same regardless of the discipline. Insofar as one is looking and discussing "evidence-based medicine," the rules of engagement are the same. The only difference is the vocabulary.

I've yet to meet a legitimate scholar from any discipline (medicine, physics, chemistry, whatever) who's disagreed with that point.

I've shared my own background and real name, so that folks here can decide whether I'm qualified to participate in this discussion.

Would you care to share your own?

Respectfully, Lisa
 
B

bluebell

Guest
When I first was diagnosed I remember googling this disease. The first, oh, 100 hits were all sites trying to sell me vitamins, to clean out the air ducts in my house, CDs, DVDs, expensive clinics with "the" cure. For this reason, I honestly think Gerwyn is one of the kindest people on this forum. I don't know much about science, but I know a little about human nature and about how people exploit those who are unfortunate or downright desperate. Gerwyn seems to be trying to keep those people out of my pockets, and the pockets of other people here who, like me, can't read a pubmed abstract without going cross-eyed. I am not on team Gerwyn, but I do have two PhD research scientists in my family and every time I ask them to look at the evidence for this or that, they invariably agree with his interpretation of what science does or does not know at present. I could not think of a way to write that without anthropomorphizing science, sorry (brain fog).

Gerwyn writes and thinks like a scientist; that means he doesn't expect that attacks on information be interpreted as attacks on the transmitter. I would humbly suggest that those who have problems with something he writes use any scientifically trained contacts they have to confirm or deny his interpretation of the data. It would be way fun if someone caught a true error;-). Otherwise, it might help to view him as an alien from the planet science. I can tell you, they have different customs and languages there...but they come in peace.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
It's great to hear all of this, BlueBell. I look forward to a spirited intellectual discussion with Gerwyn.

My problem is that I'm afraid that the moderators will remove the thread before I have a chance to respond. And I don't think that participating in this discussion should require my being chained to the computer all afternoon on a beautiful Saturday.

Cort, would you please give me the benefit of the doubt and leave this up until I return?

Thanks much,

Lisa
 
G

Gerwyn

Guest
Thanks Lisa, for posting this info about mold. I've been taking it in with great interest and have my own story to add.

I have a friend who had CFS and is now in total remission from it, and has been for many years. He lived in Marin County back in the 70's, and was a very successful and brilliant computer wizard, involved in the beginnings of that industry here in the Bay Area. One day he had an accident with a lawnmower, which somehow ran over his foot and severely injured it. The foot became so badly infected that gangrene began to set in. He was hospitalized and given and choice of either amputation or, as he put it "enough antibiotics for a bull." He chose the antibiotics, which saved his leg but destroyed his life as he knew it. Not long after this, his immune system fell apart completely, (his T-cell count fell below 300), he developed severe allergies to the point of becoming a universal reactor, (what is now called MCS), and collapsed into what he called an exhausted "coma like sleep" for the next 5 years, during which time he was able to remain conscious for only 3-4 hours/day. Because there was at that time, back in the late 70's, very little information regarding his illness, he was left to figure it all out mostly on his own. He consulted with several of the more famous MCS doctors (Dr Rea in Texas and Dr Randolph in Chicago), and many brilliant alternative people (like Jeffrey Bland and others whose names I can't remember), but had only only limited success with any of the treatments he attempted... UNTIL he finally decided to completely give up all vestiges of his old life and move out to the desert, where he lived out of his car for most of the next fifteen years.

According to him, living in the desert, away from all pesticides, perfumes, toxins and molds, was the most significant part of his ultimate cure. He took A LOT of supplements--a list of about 40 at one point, and was especially fond of the Sunrider herbs, but he insisted that none of that worked as well as it did when he was in the desert. Upon each return to civilization, he would have a toxic backslide, and with each return back to the desert, he would find relief and renewal of his energy. It took many years and a lot of perseverance for him to get completely well, and there were a LOT of ups and downs on that journey, but the last time I spoke with him (in 2004), he told me he now has "a life that is very different than the one (he) had back in the early 90's," when I fist met him. He travels all over the world, stays in hotels, and gets away with eating mostly whatever he wants. He lives in Arizona when he isn't travelling and is finally able to live in a HOUSE.

He's been harping on me to get out of the Bay Area for years, as he thinks it saved his own life to do so. I can't imagine living out of my car in the desert, though I do know others who have done this with some limited success. But no one has done it AS successfully as this guy did.

I have to date recovered remarkably well.It has nothing at all to do with mold.How did he know he had ME and not MCS.His picture appears to suggest the latter.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Gerwyn wrote:

>I could however be completely wrong. Behavioual "science" generally does not use the scientific method and interprets observations in accordance to a strict paradigm specific perspective.

If you'd like, please elaborate on your understanding of how behavioral scientists use (or misuse) the scientific method. I then will let you know if your understanding is correct.

Best, Lisa
 
G

Gerwyn

Guest
Gerwyn wrote:

>I could however be completely wrong. Behavioual "science" generally does not use the scientific method and interprets observations in accordance to a strict paradigm specific perspective.

If you'd like, please elaborate on your understanding of how behavioral scientists use (or misuse) the scientific method. I then will let you know if your understanding is correct.

Best, Lisa

behavioural science starts with the notion that environment determines behaviour.if it is still true the science stops there
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I have to date recovered remarkably well.It has nothing at all to do with mold.How did he know he had ME and not MCS.His picture appears to suggest the latter.

According to him, he had both. He tested positive for MANY viral infections. There was no XMRV to test for in 1979.
 
G

Gerwyn

Guest
Is this the inquisition? Cuz it sure sounds like it.

I will email him and ask. If, and when, he gets back to me, I will let you know.

no DB not an inquisition just that his symptom profile and recovery are more suggestive of MCS than ME .If he had both which was the more disabling.His move back to civilisation provoking his symptoms and his move away relieving them all point to MCS. If this was caused by immune damage then it could eventually dissipate as the immune system repairs albeit very slowly.it is genuine scientific curiosity on my part
 

bel canto

Senior Member
Messages
246
It's great to hear all of this, BlueBell. I look forward to a spirited intellectual discussion with Gerwyn.

"spirited intellectual discussion"? If you read Bluebell's post she writes "Gerwyn writes and thinks like a scientist...." Because he is a scientist of course.

There are many definitions of intellectual - somehow I'm thinking that "scientific" is not what you have in mind. "spirited" implies debate, not presentation of facts. And I'm not sure I understand how the social sciences are based on the "scientific method".

Please feel free to discuss your opinions and speculations - this forum has many threads that contain those, and people who like to read them. I believe that what Gerwyn and many others of us object to is using the language of science to describe something that is not such.

It does seem that your discussion of mold belongs on a thread other than "XMRV testing, treatment, and transmission". Cort will have to make that decision, of course.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Thanks for your thoughts, Bel Canto.

I'd like to ask folks not to defend me here, please.

I want this thread to be a discussion about the topic, not a discussion about whether we should have the discussion.

I apologize for not responding to the substantive comments yet. I've had a busy and eventful day, and will do so soon.

Best, Lisa