Dr. Hyde on XMRV

Cort

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Dr. Hydes take on XMRV and CFS. Oddly enough he really focuses in the financial aspects of the different theories of ME/CFS. For me Dr. Hyde presents intriguing ideas packaged in a rather disorganized fashion and sometimes some wild statements. I've never been sure what to make of him.

He believes ME is caused by a brain injury either from any number of infection or some sort of trauma. It I got him right XMRV could not be the cause of the disorder because the incubation time is too long - he's very committed to a short incubation time.

The Whittemore Peterson Institute CFS - Retrovirus
Announcement


The Cause of CFS is a Retrovirus: In 2009, Dr Peterson, is probably one of the nicest and learned colleagues in the field of CFS, recently from the brand new, just opened, (?) multi-million dollar Whittemore Peterson Institute in Reno Nevada, announced overwhelming evidence that the cause of M.E. or CFS, is XMRV retrovirus. The XMRV mouse retrovirus occurred in 68% of the CFS patient’s blood samples and only 4% of non-CFS patients. Pretty convincing!

This retrovirus theory comes with a history: It was first raised as a possibility by the gay community at a symposium I attended in San Francisco in 1987 and again by Florida based researcher Dr DeFreitas in the early 1990s. Dr DeFreitas discussed this retrovirus theory in our textbook, The Clinical and Scientific Basis of M.E. /CFS.

At the very least, this retrovirus discovery is great free advertising for the Whittemore Peterson Institute. 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. I should add that incubation period of XMRV is up to 21 days which makes it impossible to cause an epidemic illness.

One theory to explain this “new” finding is that XMRV is a mouse virus and since many research institutes have tens of thousands of mice, cross contamination of specimens are inevitable.

The Cause of CFS is Human Herpes Viruses 6 & 7: In June 2008 I was paid by the Swiss pharmaceutical company, ROCHE to attend a symposium on CFS in Baltimore, Maryland. 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. Now I am under the opinion that the technology for demonstrating HHV 6 & 7 may be under copyright to a USA laboratory. It is also possible they give cash or free travel grants to University researchers who can prove the HHV-CFS association but not to those who do not find this association. It is my belief that the US laboratory which sponsored this Symposium has the copyright of this test.

Whether money is changed hands or not, if I am correct, such a symposium with over 100 research papers could ultimately bring in several million dollars or more a year of royalties to this laboratory. Also, Roche Pharmaceuticals who paid my way along with 8 of the other researchers, one from the Whittemore Peterson Institute, were offering a carrot of 30 million dollars in research grants to the ten researchers and myself who would treat CFS patients with their new Herpes Virus anti-viral. Dr Peterson, the Whittemore- Peterson researcher was one of the ten at this private meeting with me. (I think Peterson would say a subset). He too stated that he found conclusive evidence that the cause of CFS was HHV 6 & 7. I was the only invitee who told the Roche representatives that they were wasting their money. If ROCHE had funded the Whittemore Peterson it might have been financial suicide, to then state that the XMRV retrovirus was the cause of CFS.

The Cause of CFS is an Enterovirus: In 2007, the son of California Infectious Disease specialist, Dr John Chia fell ill with M.E. He also complained of stomach pain. Dr Chia examined his son’s stomach and saw an infection that when biopsied, turned out to be a Coxsackie enterovirus. This is a virus in the same family as poliovirus. This is the same virus family associated with the Akureyri Iceland epidemics in 1947. It is the same group of viruses associated with the M.E. pandemic in Canada in 1984-1986. There is no money to be made with this virus since there is no patent on it and it is difficult to recover. In four of the sixty M.E. Epidemics an enterovirus was recovered. In over 50 other epidemics, no virus was recovered but the average incubation period of the infection in these epidemics was 3-6 days, as it is in all enterovirus infections. HHV6 has an incubation period of 10-12 days. The EBV incubation period is 40 days.

So in three consecutive years, 2007, 2008 and 2009 three absolutely certain causes of CFS were announced.

3a: What are my opinions of the cause of M.E.?

A: In epidemics or Clusters: any virus that attacks the brain that has a short incubation period of 2-6 days can provoke epidemics of acute onset disease. This excludes HHV6 & 7, EBV, and HMRV with 10 to 40 day incubation periods. Among common viral infections, enteroviruses & influenza viruses with a 2-6 day incubation period can fit this epidemic possibility or any milder encephalitic viruses. In both Epidemic and Sporadic Illness the overwhelming majority are patients are in the health care and teaching professions, both in daily contact with infectious disease.

B: Sporadic (individual) acute onset cases of M.E.: any infectious, traumatic, or immunization agent causing diffuse low grade diffuse brain injury or encephalopathy can cause M.E. This can be due to epidemic viruses such as enteroviruses and influenza viruses or non-epidemic viruses such as Epstein Barr Virus in Adults:

1. The enteroviruses infections Coxsackie, ECHO and numbered enteroviruses but also Varicella (chicken pox) in adults and EBV in adults. I have never had a case of chronic EBV last longer than 3 years. (!)

2. Any number of infectious agents capable of causing an encephalopathy. (Viruses infecting children and youths tend to have a less injurious action on the brain than the same viral infection affecting adults over 25.)

3. Certain immunizations given to some adults, but particularly Recombinant
Hepatitis B (RHHB) and Influenza immunizations can cause M.E., even when not contaminated as in the Chiron influenza immunization. This causal link may be due to the fact they are two of the few immunizations that adults receive frequently. Chronic illness such as M.E. can occur if the patient is travelling or in contact with minor infectious agents in the 3-week period following any immunization. The trick is never to receive any immunization immediately prior to travel, particularly to a third world country.
You can find the whole paper on his website www.nightingale.ca
 
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Dr. Hyde

Hi Cort,

We were just talking about this on another thread. What is very sad is that Hyde states that WPI is claiming that XMRV is the "cause" of CFS. I think WPI has stated very very clearly that they are not saying that XMRV is the cause of CFS. A lot of research would have to be done before anyone can make that claim.

Thanks for putting his statement out there.

Maxine
 

starryeyes

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Roche Pharmaceuticals who paid my way along with 8 of the other researchers, one from the Whittemore Peterson Institute, were offering a carrot of 30 million dollars in research grants to the ten researchers and myself who would treat CFS patients with their new Herpes Virus anti-viral. Dr Peterson, the Whittemore- Peterson researcher was one of the ten at this private meeting with me. (I think Peterson would say a subset). He too stated that he found conclusive evidence that the cause of CFS was HHV 6 & 7. I was the only invitee who told the Roche representatives that they were wasting their money. If ROCHE had funded the Whittemore Peterson it might have been financial suicide, to then state that the XMRV retrovirus was the cause of CFS.


I have never had a case of chronic EBV last longer than 3 years. (!)
So did Montoya push Valcyte on us for a grant of 30 million dollars? Were the stories of PWC getting well on it even true? When I called Montoya's office they assured me there that they were personally seeing patients get well on it and patients of his on the message boards were stating that they were meeting PWC who had gone from wheelchair bound back to work. Where are these PWC now? I heard a year or two later that many if not all relapsed. I'm not saying Montoya did this for the money, or am I? I just don't know. Were we scammed?

The other thing is what does Dr. Hyde mean that he's "never had a case of chronic EBV last longer than 3 years. (!)" ? I am bewildered by this statement.
 

oerganix

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Hydes inaccuracies

Hyde also says that Coffin said XMRV is from wild mice. He did not say that. He said that was POSSIBLE, but he didn't know where it came from.

He almost accuses Peterson of selling out to Roche. I think that's irresponsible of Hyde. There is some value of "following the money" in this or any other research, and Hyde is right in saying that much research is driven by the profit motive.

But he is not right to say that the Whittemore-Peterson research/theory will end up in the rubbish bin. All research has to start with an hypothesis and then prove or disprove it. That is exactly what is going on right now with XMRV. To paraphrase Coffin, this paper in Science was as good as it gets for a first paper, but that's all it is -a first paper.

I certainly don't begrudge any research program that is looking at ME/CFS any money they can get. 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.

It's about time ME/CFS got this kind of attention and even if it turns out that XMRV is not the "cause", a lot of good can come from the interest this discovery has generated.

And, by the way, in looking at the Whittemore-Peterson Institute webpage, I see they had, and have, other hypotheses on the table, so I think that accusing anyone from there of having a mindset biased in favor of XMRV is also unfair and inaccurate.

And all I've heard from WPI is: do good science, no matter whether it confirms or destroys the theory that XMRV is the culprit. I trust Science magazine a lot more than I do Dr Hyde to know when good science is being done.
 

MEKoan

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Hey Cort,

To assist my poor wonky brain, would you mind either breaking up Hyde's quote where you interject (my first choice) or use square brackets rather than parentheses?

It's so easy to confuse me!

Thanks!
 

MEKoan

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Hyde is being assinine.

The XMRV research has brought out the very worst in a number of ME/CFS researchers and clinicians.

No matter how XMRV plays out, they have behaved badly and they look like petulant children.

I'm very disappointed in so many people.
 

Martlet

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I heard a year or two later that many if not all relapsed. I'm not saying Montoya did this for the money, or am I? I just don't know. Were we scammed?
I don't know about this particular drug, but I was put on a trial of Florinef - not by my own doctor, I hasten to add. At first it did nothing, then I was up and out of my wheelchair - so much energy I could hardly sit still. I was interviewed on the local TV in St. Louis as the particular doctor's pet patient. Except that when I told him, each month, that I was beginning to feel really lousy, he blamed me by saying I was doing too much and upped the dose. Within a year, I was worse than before I started and, for the first time in my life, had high blood pressure to boot.

The net result for me is that I won't try anything until it is tried and tested and I have seen that people remain well.

Sometimes, I think doctors hammer on their pet theories, ignoring all evidence to the contrary. What I like about the WPI is that they are going about their tests in the right way, are not making outlandish claims and appear to want to do everything properly, with their tests replicated.
 

dannybex

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Hi Cort,

We were just talking about this on another thread. What is very sad is that Hyde states that WPI is claiming that XMRV is the "cause" of CFS. I think WPI has stated very very clearly that they are not saying that XMRV is the cause of CFS. A lot of research would have to be done before anyone can make that claim.

Thanks for putting his statement out there.

Maxine
Actually, Mikovits has repeatedly suggested a causal link. Not sure if she's said that it is THE cause, but in several interviews she's come quite close to that. Here's one thread where it's discussed:

http://forums.aboutmecfs.org/showthread.php?t=711&highlight=Mikovits

That being said, I have always found Hyde to be a rigid, divisive man who is set on his views being the only correct ones, and dismissive of all others. (Kind of like the NCF.)

He completely negates the 40% of patients who had gradual onset as not having 'real' ME, even if they're as disabled and in some cases bedridden, and bristles at the term CFS/ME or ME/CFS.

He emphasizes viral causes but never talks about environmental influences like mold, pesticides, heavy metals and other chemical exposures that clearly can play a role in many illnesses including CFS/ME.

"At the very least, this retrovirus discovery is great free advertising for the Whittemore Peterson Institute."

Sheesh Byron. So much jealousy in show business.
 
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Dannybex - causal

Actually, Mikovits has repeatedly suggested a causal link. Not sure if she's said that it is THE cause, but in several interviews she's come quite close to that. Here's one thread where it's discussed:

http://forums.aboutmecfs.org/showthread.php?t=711&highlight=Mikovits

That being said, I have always found Hyde to be a rigid, divisive man who is set on his views being the only correct ones, and dismissive of all others. (Kind of like the NCF.)


---------------
Hi Dannybex,

Not sure which of the interviews you are referring to. The link you listed took me to a page that had several. As discussed on other threads, at least one of those interviews looked suspect.

However, I think you are right when you say Mikovits has hinted or suggested that XMRV might be the "cause" - I suspect that she wants it to be? But that would mean sentencing huge numbers of us with a disease that currently has no accepted treatment.

I also believe she has said that it should be run thru Hills Criteria of Causation. Isn't that the one that they use for making the HIV "causes" AIDS statements? If that is the case, it seems like WPI is headed in the right direction.

Thanks for helping the most accurate information to be heard.

Maxine
 

Sing

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Reflections on Dr. Hyde's Statement

I wish Dr. Hyde had been part of the team or could become part of it somehow. He is sounding like the bad fairy who didn't get invited to Sleeping Beauty's blessing. My understanding is that he has been researching and diagnosing ME/CFS since the mid 1980's, and co-wrote a big textbook on the subject, the only one so far. He is very intelligent and knowledgable, so he might consider himself entitled to be asked.

Countering his statement that XMRV couldn't be "the cause", isn't one of the hypotheses that XMRV is part of a combination of factors including a precipitating illness, or other "insult" to the immune system? That and genetic susceptibility?

I don't know much about the immune system except that it is complex, operating in a sequence with many inter-related parts. How this all works in relation to different pathogens and possibly a retrovirus on board to tinker with, and eventually screw up, the works, these scientists know much more about than I do, but my impression is that they are still learning too--yet at an early stage.

So I wish Dr. Hyde hadn't hurled his critical judgments onto the scene. "Yes, Dr. Hyde", I want to say, "We know you are out there. It is too bad no one asked you for your opinion. You deserved that, considering your expertise, but haven't you been a lone wolf in your career?--hunting down the knowledge that no one else was looking for, but now it is time to come and work together. Rather than just criticizing the others' work, wouldn't you try to help instead?

Sleeping Beauty is still sleeping in the attic, her years ticking by."

Cecelia
 
A

Aftermath

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Still Better Off

However, I think you are right when you say Mikovits has hinted or suggested that XMRV might be the "cause" - I suspect that she wants it to be? But that would mean sentencing huge numbers of us with a disease that currently has no accepted treatment.
We would still be 50% better of than it stands now, where some of us have already spent over ten years with a disease that has no accepted treatment and no known cause.
 
K

Khalyal

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Petulant Children

I couldn't agree more with that characterization. I am thoroughly disappointed with the behavior I am seeing from some of these people.
 

Scavo86

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Hi Dannybex,

Not sure which of the interviews you are referring to. The link you listed took me to a page that had several. As discussed on other threads, at least one of those interviews looked suspect.

However, I think you are right when you say Mikovits has hinted or suggested that XMRV might be the "cause" - I suspect that she wants it to be? But that would mean sentencing huge numbers of us with a disease that currently has no accepted treatment.

I also believe she has said that it should be run thru Hills Criteria of Causation. Isn't that the one that they use for making the HIV "causes" AIDS statements? If that is the case, it seems like WPI is headed in the right direction.

Thanks for helping the most accurate information to be heard.

Maxine
I think that if causality were to be proven then treatment would be a much easier thing to achieve and not actually take that long to develop.
 

oerganix

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illness prevalence

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.


I did not know this--this is big news to me.
I'm sorry I can't find the original source of this information right now. I did find this statement from Reeves:

<By examining the prevalence of other common women's diseases, the CDC researchers concluded that CFS is a serious women's public health concern.

To put this into perspective, CFS is three times more common than HIV infection in women (125/100,000), 25 times the rate of AIDS among women (12/100,000), and is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000)," Reeves said. >

While it gets a lot of attention, from women and men, breast cancer is at a very low incidence in the US - less than 1% chance of getting it for all Americans, including men.

CFS being perceived as a "woman's" illness is a large part of the lack of attention to it, I think, since we all know women are so prone to hysteria.:rolleyes:
 
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I'm a little surprised

(Forgive me if you've read this elsewhere - I don't know where my post went.)

I've long respected Byron as one of our hard-line advocates in medicine, but I haven't read his book or seen him. If Dannybex's appraisal of him has merit, that's funky, because I sort of was a rapid onset and wasn't - I definitely didn't feel flu-like and wasn't part of an acknowledged outbreak. Yet my Sed Rate's been around 2 ever since - classic Tahoe/Charlotte/Osler's/whatever. That's one of the very things Byron pointed out in Osler's. So in Byron's book, where does that put me?

The remark about not being invited to the party - Byron's one of the best known Canadian ME docs, and yet he didn't take part in the Canadian Consensus document, and near-zero ESR isn't in there. Was he not invited, or did he not want to take part?

I respect his caution on money, although that's the name of the game these days. But he's called Peterson a sell-out and the Whittmores and Mikovits little short of liars. That's a bit much. Whatever XMVR turns out to be, as long as WPI's goal of stratifying/grouping us remains, there's another book to be written.
 

starryeyes

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I don't know about this particular drug, but I was put on a trial of Florinef -

The net result for me is that I won't try anything until it is tried and tested and I have seen that people remain well.

Sometimes, I think doctors hammer on their pet theories, ignoring all evidence to the contrary. What I like about the WPI is that they are going about their tests in the right way, are not making outlandish claims and appear to want to do everything properly, with their tests replicated.
I agree with all you said Matlet and I'm also very sorry that you ended up doing worse after a while on Florinef. I have heard that happened to PWC with that substance. That doctor was a jerk for blaming you for relapsing. I hate when they do that. Montoya did that to PWC a lot too.
 
R

Robin

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How does he know that XMRV has a 21 day incubation? If we don't know about transmission, how would he know about incubation? Has that even been studied?


teejkay said:
So did Montoya push Valcyte on us for a grant of 30 million dollars? Were the stories of PWC getting well on it even true? When I called Montoya's office they assured me there that they were personally seeing patients get well on it and patients of his on the message boards were stating that they were meeting PWC who had gone from wheelchair bound back to work. Where are these PWC now? I heard a year or two later that many if not all relapsed. I'm not saying Montoya did this for the money, or am I? I just don't know. Were we scammed?
I don't think it was a scam, it was just a study. I'm interested in this too, and I started a thread in the Treatment and Therapy > Antiviral forum asking if anyone knows about it first hand.
 

starryeyes

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How does he know that XMRV has a 21 day incubation? If we don't know about transmission, how would he know about incubation? Has that even been studied?


I don't think it was a scam, it was just a study. I'm interested in this too, and I started a thread in the Treatment and Therapy > Antiviral forum asking if anyone knows about it first hand.
That is a good question about the incubation. This Dr. Hyde seems kinda odd.

Thanks Robin, for starting that thread. I'll look for it.