Dr. Hyde on XMRV

[kolowesi]

incubation periods and gradual-sudden onset

Just my own experience and questions here.

I caught something, started running low-grade fever and had some swollen joints, increasing fatigue and increasing cognitive dysfunction. About 10 weeks later, I got the "killer flu."

A year later, I was able to travel to a CFS specialist who explained that EBV reactivating and acting in concert with HHV-6 took out my B cells (now I wonder about XMRV, as my T cells were very low also). I still had positive IgM antibodies to EBV nuclear antigen (viral dna) 18 months after the killer flu.

So I've always wondered if there was a cascade. Maybe the original pathogen was enterovirus; it was something with an incubation period of around 3 days (I know when I was exposed, but not to what).

So what if XMRV is piggy-backed onto enterovirus and/or HHV-6a and/or borrelia and/or mycoplasma?

Dr. Hyde's reasoning only makes sense if people only have one viral infection. Many of us have lots of active co-infections (at one time or another, I've tested for active EBV, HHV-6, enterovirus, CMV, and mycoplasma).

One of the scientists involved in the XMRV research spoke about a synergistic relationship, I think. That might explain a short incubation period followed by immune system collapse some time later.

And when the absolute B cell count is greatly reduced, one wonders whether the memory B-cells are also greatly reduced, leading to loss of normal immune surveillance and dependence on the RNase-L pathway. Upregulation follows as one or more pathogens cleave RNase-L and the RNase-L fragments inactivate their own inhibitory enzyme.

I can look this up later if anyone is interested, but the deadly influenza in 1918 was actually a viral-bacterial "cocktail." The virus weakened the person and the bacteria caused a fatal immune response. From the book The Fourth Horseman.

I'm looking forward to hearing more. Thanks for the info, everyone!

Kelly

 

[dsdmom]

Incubation period

I, too, am very curious where he is coming up with the 21-day incubation period. It's the first I've seen about it and I feel like I've been doing more than my fair share of reading on the subject.

Anybody else have any info on this?

 

[mezombie]

Definition of "Incubation Period"

The "incubation period" refers to the time between exposure to an infectious agent and the appearance of symptoms.

The length of an incubation period is something that can be shown in animal experiments (in which a pathogen is introduced to a healthy subject).

I don't see how anybody can know what the incubation period is for ME/CFS, as no one knows what we were exposed to that made us sick.

Even if Hyde is correct and it is an enterovirus, how does one go back and figure out when the incubation period started in someone already sick?

 

[Eric Johnson from I&I]

> A woman is more likely to get ME/CFS than she is likely to get breast cancer, heart disease or lung disease. But all of these illnesses receive far more money, attention and respect than ME/CFS.

Nay sir, "The National Cancer Institute, a component of the National Institutes of Health, estimates that, based on current rates, 12.7 percent of women born today will be diagnosed with breast cancer at some time in their lives."

Ye lifetime prevalence of CFS is higher than the point prevalence of ~0.6%. But not that much. Probably twofold.

 

[jackie]

Kelly....just an interesting note - as I noticed your comments about the Influenza Epidemic of 1918.

In 1918 my mother was 12 mos. old and living with her 20 yr.old parents - along with quite a household of several generations of relatives! - on their family Horse Ranch in Wyoming.

The Influenza hit full force, rapidly killing her young mother, and several Uncles and Aunts.

No Doctors would make the trip out to the ranch...neighbors completely isolated themselves, no one could make contact with anyone outside their own families, couldn't even travel into nearest towns for supplies.

And they didn't even have ASPIRIN available to ease the pain! My infant mother, HER father and HIS mother survived - untouched by the virus.

My grandfather lived well into his 80's - and my mother is still alive at 94!... and living with me!

Every blood relative from my mothers side of the family (my mother included) has experienced Cancer of some type.

The way she describes the stories told to her (the absolute terror people experienced) - it was like living through the Black Plague of the Middle Ages!

jackie

 

[Eric Johnson from I&I]

What is Hyde saying in the quote below? It's not at all clear whether he is supporting or attacking the (false) claims about HHV6 and 7 that he attributes to others:

"[In Jun 2008] There were well over 100 “eminent” speakers from around the world, all the speakers except for a salaried researcher from the Canadian Government Viral Detection Laboratory in Winnipeg stated they found Human Herpes 6 & 7 in the 70-80% of all CFS patients but not in healthy controls."

A little university called Johns Hopkins says:

">90% of adults seropositive for both viruses. Primary infection HHV-6 occurs in the first yr of life; HHV-7: age 2-3 years. Transmission via saliva and possibly vertically."

This was known a long time ago, for example in 1997:

"Diagnosis of significant infections by human herpesvirus 6 (HHV6) and 7 (HHV7) in transplant patients has proved difficult because both viruses are ubiquitous and can cause persistent infections in their hosts"

It seems very hard to believe that 100 speakers claimed -- rightly or wrongly -- that they found HHV6 and 7 absent from healthy controls in 2008. I think Hyde made a glaring mistake in his writing and possibly also in his thinking. There are subtypes of HHV6 that might be relevant, but he doesn't mention them at all.

Hyde can be pretty scattered, including in his textbook -- but it would be very hard to do without that book if you want to understand things technically, and he sells it cheap.

 

[Warbler512]

HHV-6 and Yet Another Definition to Deal With

According to the HHV-6 Foundation, 6B is the one present in nearly everyone by age 2, and causes roseola, though it can also do other things. -6A, according to them, is more likely to be found in "CFS," AIDS, and MS and is acquired later in life.

Hyde is definitely going to stir the pot and throw in his own vegetables.

At http://www.nightingale.ca/, and he's got his own definition of ME itself. it's much like Canadian Consensus, but more about sub-typing ME by cause. That can be a toughie, since he argues there can be pre-disposing factors going on the patient isn't aware of (this almost gets into CDC territory here). Even just immunizations: does everyone recall every time we've been immunized? I'd think a lot of his patient histories wind up somewhat inconclusive. It seems he would include organophospate poisoning and even GWI as secondary ME.

Nevertheless, he seems to have a heck of a lot to bring to the table, having worked in the older outbreaks too and basing a lot of his stuff on the original ME definers. (Henderson, I believe, wasn't convinced what happened in the '80s was ME.) So why wasn't he helping write Canadian Consensus in 2003?

Yet he gets invited by Parliament to present his own definition to split ME of from "CFS" in Britain. (And posted is the '07 edition.) His first invite was before Sophia Mizra was sectioned and died of "CFS." But has this become the British definition of ME? For practical purposes, from Malcolm Hooper etc., it doesn't sound like it.

 

[Advocate]

What is Hyde saying in the quote below? It's not at all clear whether he is supporting or attacking the (false) claims about HHV6 and 7 that he attributes to others:

Hi Eric,

I'm glad you noticed those details, and posted sources.

 

[consuegra]

Dr. Byron Hyde

I have heard Dr. Byron Hyde speak several times. His talks are always sobering as he paints a constricted and very difficult picture of this complex illness. The information that he presents regarding the brain and thyroid and other matters are a bit jolting. Certainly Hyde thinks different than the rest. He is worried about other things going on, and I am too. By chance I encountered him in the men's room at the 2007 conference in Ft. Lauderdale. He was a bit bent out of shape, expressing to me, a stranger, his exasperation with the conference and the clueless nature of many of the participants. He rattled off that CFS/ME patients were impossible to sort out as they had twenty different diseases. He said that he could only help 15% of his patients and was powerless to help the others. He was clearly upset and I suspect feeling isolated. While I understood what he was saying, I took the time to point out to him that maybe he was talking to the wrong person, that I was a Patient Advocate for my daughter and that I didn't find this information particularly useful to me. It is obvious to me that Dr. Hyde makes great efforts to understand this complex disease. I imagine that he is suspicious of a single cause or of a potential cause that has been seemingly embraced so quickly.

Chris

http://cfspatientadvocate.blogspot.com

 

[Marylib]

Dr. Hyde and ME

Yes, what I have gleaned is the Dr Hyde is talking about a very specific group of patients. And the internet group called "Hummingbird's Guide to ME" are all people who have been diagnosed by him? Or who have been burned (like we all have) by the invention of "CFS," and identify only with ME, as defined by the WHO?

I wonder what treatments Hyde has given for ME? I have never been clear on that. Anyone know?

 

[Sing]

Dr. Hyde, a frustrated lone scientist?

I think it would be good if any of us who are articulate with these questions (around the incubation periods, co-infections, etc.) would write to him directly. There is an email listed: info@nightingale.ca

I wish he'd get invited to a conference or to speak, to bring him into the conversation. He is a resource which shouldn't be given up on.

When I was in Ottawa, I went by his office just to see it, even though I had decided not to pursue a diagnositic workup and case management with him (too expensive for non-Canadians plus it didn't include most testing and any treatment). It was a one person office with just a secretary--that is it. Loads of records. No frills. When I asked the secretary if she knew of patient groups I could connect with, also if there were any doctors in Ottawa that Dr. Hyde recommends for treatment, she said "No"--gave me no information. My point is that this is a guy who seems to have been going it alone.

If I can make a psychological guess, sometimes an outsider type gets fascinated with other outsiders, like us, re. medical science. But there comes a time when outsiders need to take some defenses down and join up, to make some progress. That is why I think it could be wise to communicate directly with him too.

Just my opinion,

Cecelia

 

[Sing]

Reply to Marylib

Yes, what I have gleaned is the Dr Hyde is talking about a very specific group of patients. And the internet group called "Hummingbird's Guide to ME" are all people who have been diagnosed by him? Or who have been burned (like we all have) by the invention of "CFS," and identify only with ME, as defined by the WHO?

I wonder what treatments Hyde has given for ME? I have never been clear on that. Anyone know?

As I just wrote, I found out that Dr. Hyde doesn't treat, he only diagnoses, leads the case for at least18 months, and does research.

The woman who writes A Hummingbird's Guide to ME (one of my favorite sites) is in Australia and never seen Dr. Hyde, last I heard.

Cecelia

 

[Eric Johnson from I&I]

I'm not surprised to learn he's in it for something other than the money. His textbook is big and it costs like 30 or forty bucks new. Many textbooks of that size and with such a small audience cost like 200 dollars.

 

[George]

What does that mean??

"Earlier today, the 25% ME Group announced that Dr Byon Hyde, MD, has taken up the role of Patron and Medical Advisor to this organisation for the severely affected see previous posting:"

from http://meagenda.wordpress.com/2009/11/06/dr-byon-hyde-md-reference-to-xmrv-retrovirus-in-goteborg-conference-address/ posted on November 6th

So what does that mean in light of his statements about XMRV?? Anybody have a someone they can ask in the group??

 

[Eric Johnson from I&I]

Geez, I didn't even see this before, or it didn't register:

"It will possibly bring them in many millions of dollars from, patients willing to be separated from their assets, generous charities and governments before the retrovirus theory is once again thrown into the garbage bin."

How amusing. Nothing that he said there was one tenth as solid as the Mikovits paper. Where did he get an incubation time for XMRV in man? Has he been running top secret experiments on humans? I think not. He's probably referring to the incubation period of MuLV in mice; if so that's a poor indicator of what XMRV does in man.

Anyway, we know that some CFS follows EBV mononucleosis. So it's pretty obvious that *if* XMRV causes those cases, the patients must already have XMRV beforehand and then, during the mononucleoisis, enter a chronic disease state sustained by one or both of those viruses or their effects. XMRV doesn't have to do the job alone or sicken one immediately in all cases, and it certainly can't do so if it underlies the post-EBV cases and other post-viral cases. This is a pretty obvious possibility which a good medical biologist ought to easily think of, if he's really seeing way beyond what John Coffin and other reviewers of the Mikovits paper can see. More broadly it's called the two-hit hypothesis (in which the first hit doesn't cause any symptoms by itself).

Adding all that to the error I pointed out before, his remarks are farcical. They're a waste of time. Though I would emphasize again that his overall contribution has been very valuable.

 

[rebecca1995]

Eric wrote:

Anyway, we know that some CFS follows EBV mononucleosis. So it's pretty obvious that *if* XMRV causes those cases, the patients must already have XMRV beforehand and then, during the mononucleoisis, enter a chronic disease state sustained by one or both of those viruses or their effects.

In response to Dr. Peterson's question at the CFSAC meeting, Dr. Coffin said that retroviruses can integrate into (larger?) herpes viruses (like EBV). This echoes Dr. Bell's statement in his first newsletter on the subject that perhaps XMRV "piggy-backs" onto a herpes virus. So, I'm guessing from this that one could get EBV mono and XMRV at the same time.

 

[_Kim_]

Eric wrote:


In response to Dr. Peterson's question at the CFSAC meeting, Dr. Coffin said that retroviruses can integrate into (larger?) herpes viruses (like EBV). This echoes Dr. Bell's statement in his first newsletter on the subject that perhaps XMRV "piggy-backs" onto a herpes virus. So, I'm guessing from this that one could get EBV mono and XMRV at the same time.

The piggy-back theory would provide a plausible explanation for epidemics. And it also might explain why so many of us had severe cases of EBV. I nearly died from mono in 1984. Maybe it was the EBV/XMRV combo that struck me so hard. While I was hospitalized, the docs were really interested in my case. They'd never seen a case of Mono like mine and I remember lots of different doctors and med students coming into my hospital room and asking questions.

 

[zoe.a.m.]

The piggy-back theory would provide a plausible explanation for outbreaks. And it also might explain why so many of us had severe cases of EBV. I nearly died from mono in 1984. Maybe it was the EBV/XMRV combo that struck me so hard. While I was hospitalized, the docs were really interested in my case. They'd never seen a case of Mono like mine and I remember lots of different doctors and med students coming into my hospital room and asking questions.

Your history with mono sounds very similar to my brother's. He was told that he had cancer, but within in a few weeks it was decided it was severe mono. He was fortunate to have mega-insurance that did every test on earth and he could see any doctor, anywhere. My sister had severe mono in college too, almost having to drop out completely. Interesting neither sibling of mine has had lasting effects and neither believes in CFS.

What exactly does it mean for a retrovirus to "integrate" into EBV?

 

[dannybex]

and...

> A woman is more likely to get ME/CFS than she is likely to get breast cancer, heart disease or lung disease. But all of these illnesses receive far more money, attention and respect than ME/CFS.

Nay sir, "The National Cancer Institute, a component of the National Institutes of Health, estimates that, based on current rates, 12.7 percent of women born today will be diagnosed with breast cancer at some time in their lives."

Ye lifetime prevalence of CFS is higher than the point prevalence of ~0.6%. But not that much. Probably twofold.

And I believe heart disease, which can take so many forms, is the number one killer of both women and men.

 

[heapsreal]

hi

piggy back thing sounds right. I had ebv, went on famvir and had good improvement for 6 months, no brain fog or crashes, now im feeling crappy again, so maybe its this xmrv thing. Going to take a break from famvir and maybe use it intermittently. I also had some good improvement with abx but couldnt sustain it, so maybe these are all opportunistic infections caused from xmrv