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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Mikowitz accused of manipulating XMRV paper

SOC

Senior Member
Messages
7,849
I don't know, maybe the 20 year research programme done into root canals that shows they cause pretty much every degenerative disease in the body you can imagine. The reason being is because gangrene lives in the dentine tubules. Or maybe the MELISA foundation which tests for metal allergy. They have studies a showing/proving many CFS patients get better after removing a metal which they are allergic to. Most of the time its in the mouth, but not necessarily. Then there's the whole breast implant thing. Officially they are safe for all, but if you read the literature a certain percentage will get CFS, some even die. Pretty sad. None of these are helped by drugs.

Was this an answer to my question:
What are these "causes" you claim have been known for 100 years?

If so, I don't see either "100 years" or "known causes" anywhere in that.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
ME is more likely to be an autoimmune syndrome, triggered by some infectious agent AND another triggering factor
the intial pathogen is controlled by immune system, or isn't causing too much harm, and so for many years nothing untoward occurs

however, another infection or severe stress on immune system occurs which then loses control of the initial pathogen.
note most ME cases start with a viral infection, but some also occur after or combined with injury, poisoning etc.
Chronic low level mercury poisoning could well exacerbate almost any automimmune effect as it's very subtle and very nasty, and we now know a hell of a lot more folk are sensitive to it than the dental associations have said, the shmucks.

That WOULD explain a lot of the issues with ME, especially if the autoimmune response is a "standardresponse type" the body has, because ME is so like the Flu/Lyme etc effects in general (but not 100% exact)
it's a common respons mechanism, thet gets stuck to "on" because the the body knows there's persistant infection, or something's "jammed" the system on.

Please remember, many infectious agents and parasites modulate the immune system, or cloak themselves to hide from it.

Just because you have an infectious agent does NOT mean you are going to have vast global death tolls with folk keeling over within days of infection, for Pete's sake, jeesh! For example, huge numbers of people have persistant herpes infections. So, if ME has a specific cause, it could be very common but dormant/little harm in most folk (or cause very slow long term problems that would be missed).

the precise cause of ME, could have been with us for tens of thousands of years, and adapted to us, and is thus not at all obvious. A retrovirus from rodents would make sense
Rodents = granaries etc...

And the human body is awash in bacteria and virsuses, many of which we do not understand or even have discovered, as yet.
We're the product of about 4 billion years of evolution. Bugs are a lot smarter and common than you'd imagine ;)

If AIDS hadn't killed quickly, there' be almost no damn work on it initially and for a long time after, because it was a disease of *insert nasty bigotted names here* so there was a deliberate blanking out of the issue, hence hard fact research got stonewalled by the bigots in US government/religion, and there was in the very early days confusion about WTH was going on with the victims, as it wasn't killing by direct action, but by immuno suppressance etc.

Hindsight makes it all ooooh so clear and obvious to us now about AIDS, but back then, lot of folk had their head up their asses and got in the road of those trying ot understand AIDS.
So, 100 years form now, folk may look back and wodner why we were so stupid and unable to see ME was caused by a "stealth" retrovirsus that 20% of the populaiton had and that caused a wide range of problems depending on the individual's further infections, genetics, etc.
It's possible the base cause of ME coudl be responsible for a great deal of Human health problems, just liek herpes causes lot more harm than just "cold sores"
 

SOC

Senior Member
Messages
7,849
That an RV/virus is not responsible for me/cfs. People are not dying/suffering as quickly as polio.

I believe something about the person who has ME, whether autoimmune, genetic predisposition, whatever, makes some people more susceptible to a viral infection or another assault to the body, leading to me/cfs.
[my bolding]

So doesn't that make a virus responsible for me/cfs? That is, no virus --> no me/cfs by your statement. :confused:
 

barbc56

Senior Member
Messages
3,657
[my bolding]

So doesn't that make a virus responsible for me/cfs? That is, no virus --> no me/cfs by your statement. :confused:

Thanks for pointing that out. I revised my above statement. I will come back and edit the second part later. My brain fog is so horrible today and I need a good night's sleep. Something many of us could use.
 

SOC

Senior Member
Messages
7,849
That an RV/virus is not responsible for me/cfs. People are not dying/suffering as quickly as polio.

Plenty of viruses don't cause people to die, including polio. Many people infected by polio didn't die or didn't die quickly.

The many viruses and retroviruses act in many different ways. The retroviruses HTLV and HIV, for example, don't act quickly. One is invariably fatal without treatment the other is rarely fatal, but is in some cases. Flu viruses are highly contagious airborne viruses that are usually cleared quickly by the body, but the chicken pox remains in the body throughout life. Viruses and different bodies' reactions to them are amazingly variable.

I still don't understand what you're trying to say.
 
Messages
1,446
The Royal Free Disase is a very well investigated and documented epidemic of ME (London 1955). It was very thoroughly clinically, medically, investigated at the time and in the following years. There was also very detailed epidemiology. Would like to post more on this important subject but - you know - wiped.
 

Ian

Senior Member
Messages
283
just looked up the 'Royal Free Disease'. I like the way patients were almost entirely unaffected.
According to
http://www.bmj.com/content/2/5050/927.full.pdf
Out of 300, 292 were members of staff. So they were clearly exposed to something the patients (the ones most likely to be effected) were not. My guess is they were vaccinated. This is not the hallmark of an infectious disease.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
just looked up the 'Royal Free Disease'. I like the way patients were almost entirely unaffected.
According to
http://www.bmj.com/content/2/5050/927.full.pdf
Out of 300, 292 were members of staff. So they were clearly exposed to something the patients (the ones most likely to be effected) were not. My guess is they were vaccinated. This is not the hallmark of an infectious disease.

Governments were experimenting with new polio vaccines at the time, but I've never been able to find out if these staff had received the polio vaccine.
If my memory is correct, one experimental polio vaccine was withdrawn at about that time because it was causing problems. I can't remember the details.
 
Messages
1,446
As I said, sorry I cannot go into referenced detail at the 'mo, but detailed clinical assesments strongly suggested a virus, not polio and not polio vaccine..
 

floydguy

Senior Member
Messages
650
That an RV/virus is not responsible for me/cfs. People are not dying/suffering as quickly as polio.

I suggest you do more research on Polio. Only a very few people who got the Polio virus died from it. Furthermore, there were many clear pockets of infection (sound familiar?). Dr. Hyde and many others believe that ME is related to enteroviruses (ie the same category as the Polio virus). Certainly one can argue against it or choose not to accept it as a model but you haven't given a very good reason for dismissing it out of hand.
 

Enid

Senior Member
Messages
3,309
Location
UK
Looking forward to that Wildcat - in my early (Royal Free type illness) my Docs were looking for MS, Polio, Chicken Pox (rash on chest), Enteroviruses etc from my collection of symptoms. Probably most latent infections from an compromised immune system - sudden onset from one moment to the next still indicates to me some single pathogen (retrovirus) setting the whole process in motion.

To Wildcat @ 90.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
That an RV/virus is not responsible for me/cfs. People are not dying/suffering as quickly as polio.

Barb,

A RV doesn't have to act like polio. Compare HIV and HTLV - they don't act the same.

Your statement doesn't make sense when patients are responding well to ARV and AV drugs. I'm happy with my own response to AV drugs and intending to add further as I can afford them and the science progresses.

Your illness may not have an active viral component but it doesn't mean that patients don't have active viri. It may be a difference between the epidemic or acute onset patients and others.

So if you have problems connecting a RV or other virus to your own disease please don't disregard other patients who do.

Our lives may depend on it even if yours doesn't.
 

floydguy

Senior Member
Messages
650
I don't know, maybe the 20 year research programme done into root canals that shows they cause pretty much every degenerative disease in the body you can imagine. The reason being is because gangrene lives in the dentine tubules. Or maybe the MELISA foundation which tests for metal allergy. They have studies a showing/proving many CFS patients get better after removing a metal which they are allergic to. Most of the time its in the mouth, but not necessarily. Then there's the whole breast implant thing. Officially they are safe for all, but if you read the literature a certain percentage will get CFS, some even die. Pretty sad. None of these are helped by drugs.

As mentioned below, many people have had mercury fillings out and a lot of work done on the mouth with no success. How about pointing to some credible sources where people have recovered by addressing these issues? So sad you know all the answers but aren't telling us what they are (what is this mysterious metal, how did it get there?). Furthermore, is there any evidence that ME is a degenerative disease? Please provide reference to that.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
just looked up the 'Royal Free Disease'. I like the way patients were almost entirely unaffected.
According to
http://www.bmj.com/content/2/5050/927.full.pdf
Out of 300, 292 were members of staff. So they were clearly exposed to something the patients (the ones most likely to be effected) were not. My guess is they were vaccinated. This is not the hallmark of an infectious disease.

Ian, I don't know if you know this but you are stepping into the area of speculation on how HGRV's were delivered to the population.

Not sure how much you know about how much patients have been looking into mice materials and vaccinations.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
As I said, sorry I cannot go into referenced detail at the 'mo, but detailed clinical assesments strongly suggested a virus, not polio and not polio vaccine..


At first glance and without consideration of scientific studies, one would ask the obvious question of what could possibly affect the staff, but not the most compromised and vulnerable, in the immediate environment. If those numbers are indeed correct, it couldn't possibly have been an infectious agent spread by droplet or any other infectious or toxic agent spread in the air or by physical contact, both of which would be a constant potential mode for transmission in the hospital setting.

Even current day Universal Precautions used in the hospital couldn't pull off those numbers of infection control. No way, not even close. And the Royal Free outbreak was over 50 years ago. So one is left with the question of what the staff were exposed to, that the patients were not. Just musings and observations.

This topic recirculates every few years. I no longer have those old files on these kinds of topics, but for whatever reason, I'm curious on this one. So, when you feel up to it, I would appreciate taking a look at what you have Wildcat. Thank you.
 

Ian

Senior Member
Messages
283
As mentioned below, many people have had mercury fillings out and a lot of work done on the mouth with no success. How about pointing to some credible sources where people have recovered by addressing these issues? So sad you know all the answers but aren't telling us what they are (what is this mysterious metal, how did it get there?). Furthermore, is there any evidence that ME is a degenerative disease? Please provide reference to that.

The MELISA Medica Foundation has conducted extensive search on CFS patients. A study involving 930 fatigued patients saw more than half (62 percent) test positive for metal allergy. The majority of those who went on to remove the offending metal reported substantial health improvements.

That credible enough ?
http://www.melisa.org/chronic-fatigue-syndrome.php

Obviously it's not the only issue but for a lot of people exposure to particular metals causes them massive problems. Normally dentists are to blame because they assume everyone is compatible with all metals, which is a terrible terrible mistake.
 

Daffodil

Senior Member
Messages
5,875
of COURSE its a retrovirus. i cant believe there is anyone still questioning that. wtf

it isnt like HIV. it retreats from the blood into the tissue..thats why it isnt as readily transmissable.

there have been breakouts of it because in the acute phase, it is very easily transmissable.
 

floydguy

Senior Member
Messages
650
That credible enough ?
http://www.melisa.org/chronic-fatigue-syndrome.php

Obviously it's not the only issue but for a lot of people exposure to particular metals causes them massive problems. Normally dentists are to blame because they assume everyone is compatible with all metals, which is a terrible terrible mistake.

Many (if not most) CFS people are sensitive to many things. Metal might be one of them but it's certainly not the only thing. Worth exploring perhaps but based on current research it's hardly a smoking gun. I've had my mercury fillings out by the way - no relief here.
 

barbc56

Senior Member
Messages
3,657
of COURSE its a retrovirus. i cant believe there is anyone still questioning that. wtf

it isnt like HIV. it retreats from the blood into the tissue..thats why it isnt as readily transmissable.

there have been breakouts of it because in the acute phase, it is very easily transmissable.

Science is not showing that me/cfs is caused by a retrovirus nor that it's transmissible. Outbreaks are not that common when you consider the # of people with me/cfs. There is no evidence linking breakouts with an acute stage of me/cfs.

I think genetics might be worthwhile to explore for me/cfs.