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Outrageous comment by Dr John Mellors - Expert in Infecious disease & HIV/AIDS

Wayne

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One possible "far out" explanation ... a product is being injected or infused into some patients that is contaminated with or derived from mouse cells containing XMRV or MLVs. There are unregulated products without quality controls being advertised and some of these may be used by patients with CFS who are desperate for relief from their symptoms.

John W. Mellors, M.D.
Professor of Medicine
Chief, Division of Infectious Diseases
University of Pittsburgh School of Medicine[/I]
So, is this his hypothesis?

1) CFS people are desperate for relief from their CFS symptoms
2) They decide to use therapies that are uncontrolled/unregulated
3) These products are contaminated with XMRV and then transmitted to CFS patients, resulting in very high % of PWCs with XMRV

Quite honestly, I find it quite disturbing that he would present such an incredibly far-fetched notion at a SCIENTIFIC conference. The only reason I can see that he would even mention it is to try to discredit us and make us appear like a bunch of kooks.

The CDC has a long history of regarding PWCs, especially those who try various alternative treatments, as a bunch of nuts. These types of statements by Dr. Mellors just feed into that notion. I regard such conjecturing to be irresponsible, especially coming from a Professor of Medicine. Personally, I don't like it one bit.
 

taniaaust1

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So, is this his hypothesis?

1) CFS people are desperate for relief from their CFS symptoms
2) They decide to use therapies that are uncontrolled/unregulated
3) These products are contaminated with XMRV and then transmitted to CFS patients, resulting in very high % of PWCs with XMRV

Quite honestly, I find it quite disturbing that he would present such an incredibly far-fetched notion at a SCIENTIFIC conference. The only reason I can see that he would even mention it is to try to discredit us and make us appear like a bunch of kooks.
The whole conference thing was for them to try to work out what the heck is going on with things.. so im would not knock him even if he did say that at the conference... but the thing is from what we can tell so far is HE DIDNT (he did say something based on what he was thinking, but as far as we know, he may not have shared his "far out explaination". That notion was sent by him as a PRIVATE EMAIL to another and then posted here!!! He even said in his private email to the other that it was a" far out explaination".

It actually worries me a bit about people may be purposely stir the pot by doing things like that (i noticed that poster it was only their second post). i dont trust the Wessely school people and what they may do to try to turn people against researchers to stir things up.

As to his hypothesis.. we cant argue 1) and 2) are quite normal for many of us.

It is true that many of us ARE injecting ourselves with things in places other then England. I myself inject myself with B12. With injecting, even if the B12 was safe and not contaminated (as i assume it wouldnt be).. who knows.. some could use the same needles they have laying about the place esp if one had run out and couldnt get down to the pharmasist to buy more. Needles laying about houses may get contaminated.. (i myself dont do that but i do know my house is often a mess due to the CFS/ME.. i dont have mice.. shrugs.. maybe some do). i know here in Australia MANY of us do inject with this, if one goes to the Aussie CFS/ME site.. you will see injections of things eg usually B12, are very common..

Injecting with Gamma globulin is a well known CFS/ME therapy... Gamma globulin comes from blood... could this CFS/ME therapy be contain contamination??? There is probably more then this CFS/ME therapy which could be contaminated. http://en.wikipedia.org/wiki/Gamma_globulin

ahh.. i just thought about another CFS/ME therapy which is quite well known and could be contaminated .. transfer factors http://www.users.on.net/~julian.robinson/cfs/tf.htm Transfer factors are gathered from pooled human or pig blood, or bovine colostrum from non-inoculated cattle... end up being injected into us. (note.. they are saying the MLVs some of them can be transmitted by MAMMELS... so possibly those pigs and cows have been infected by the mousey virus and certainly we know that something which comes from pooled human blood may be a risk)

(note- i dont believe his theory at all... but it really isnt a stupid thing to at least seriously consider. It shows this guy is open to all kinds of way out ideas...which in fact in the long run could be a real benefit to us... he even may in the end be open to the "conspiratory CDC theory"
.........

i hope finding out his private email was made public.. will not make him wary in future in corresponding with others!! (or did the one who made his email to them public, ask politely for permission?). It would be great if researchers werent made to feel like we are out to get them!!
 

coxy

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The only way this could make some kind of sense to me is if fertility treatment i.e clomid or injections used to stimulate ovulation which i needed to get pregnant somehow infected me prior to getting symptoms of me/cfs. 2 of our children got me/cfs when they were 8 yrs, i got ill 2 yrs after them.

It has been asked by friends/family whether i think fertility treatment had anything to do with this.
 

Wayne

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There is a fantasy hinted here, at about the deep, dark practices going on behind our closed doors ...
Well put urbantravels. His comments are neither friendly nor supportive towards PWCs. To me, they were meant to demean. Why would ANYBODY put forth such an unrealistic hypothesis? What purpose could it possibly serve? I don't get it.

For those who can find the humor in this, I say good for you! :Retro wink: Really! I wish I could (it's my nature to look for humor and silver linings in all things). But for some reason, this really gets my goat. I find it to be ill-intentioned and irresponsible. It also comes across to me as fairly gratuitous and not at all scientific.
 

Wayne

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i hope finding out his private email was made public.. will not make him wary in future in corresponding with others!! (or did the one who made his email to them public, ask politely for permission?). It would be great if researchers werent made to feel like we are out to get them!!
Hi Taniaaust,

I have to agree with you on this count. Thanks for your post. I really do try to give people the benefit of the doubt, often to a fault. But I usually need to calm down first to be able to do that. I think I'm getting there... :Retro smile:

I'm sure I'll go to sleep and let this all go, and start tomorrow anew. But can anybody point out to me anything positive from his following public words?

For instance you go on the internet and look at what types of therapies that individuals with CFS can acquire and thats in the public domain its frightening. And what is given to them behind closed doors in desperation it leads the imagination astray to wonder whats actually happening
 

gracenote

All shall be well . . .
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I hope the members of the mecfs forum don't get too enraged by this and do things that might cause Dr. Mellor to shy away from HGRV research. Summerflower, if you are a member over there, it would be great if you could share this concern. I suspect that some other members at phoenix rising feel the way I do.
I was the one who wrote to Dr. Mellors asking for him to clarify the statement he made at the Q and A. I didn't expect summerflower to repost Mellors' response here. (I do not know who summerflower is.) I, along with other members of mecfs forum, have been carefully considering what to reply to him if at all.

This is one of only a few letters I have ever written to a researcher and I was surprised and pleased that I got a response. I am now realizing that I didn't get permission from Mellors to post his email response to me. I regret that I was not more careful.

Here is the email I sent to him:

Dr. Mellors,

Thank you for your participation in the Q and A for the 1st International XMRV Workshop. I was excited to be able to watch it live on my computer. I appreciated your question (statement) regarding the highly divergent detection of XMRV in the various studies from 0% to as high as 70 and 80%. And I liked your "simple" proposal about testing the same patients via multiple laboratories.

I am curious, though, about what you meant by the following statement made later on in the program. Would you care to clarify?

For instance you go on the internet and look at what types of therapies that individuals with CFS can acquire and thats in the public domain its frightening. And what is given to them behind closed doors in desperation it leads the imagination astray to wonder whats actually happening and could there be a completely different microepidemic being transferred parenterally with CFS that has absolutely nothing to do with acquisition of a retrovirus related to prostate cancer.
As a longtime patient with CFS, and one who has tested seriologically positive for XMRV through WPI, I am interested in what you mean by "a completely different microepidemic being transferred parenterraly." And what might that have to do with "what is given to them behind closed doors"?

I admit I am no scientist, and certainly not a virologist, but I would appreciate anything you might add to further my understanding of your meaning.

Thank you for your involvement in this new research.
I do not encourage anyone to write to Dr. Mellors unless they have a clear and respectful question or comment.
 
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I personally feel insulted by Dr Mellor and feel he has insulted the CFS community. He is suggesting that people in the UK who have CFS, are injecting or being infused behind closed doors, In the UK it is VERY hard to use unregulated products without quality controls, Maybe he should come and live in the UK and see how hard it is to get drugs.
Those of us who got ill directly after an immunization and have never injected anything else can also twist his words in curious ways.
 

taniaaust1

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For instance you go on the internet and look at what types of therapies that individuals with CFS can acquire – and that’s in the public domain – it’s frightening. And what is given to them behind closed doors in desperation it leads the imagination astray to wonder what’s actually happening
.But can anybody point out to me anything positive from his following public words?
The positive thing i get out of it is he's willing to think far fetched with open mind to basically anything.. that is positive when it comes to possibly one day being able to understand more about us, what we've experienced etc etc.

That part of the quote is exactly thou what id expect a doctor would think on looking about the internet at our forums. Doctors are ALWAYS usually horrified when patients treat themselves...basically we and what we do, is probably frightening him! We are a patient group, so unlike others....

Another positive thing thou.. that quote, it does show just how interested he is in us and in maybe what may be helping us. Otherwise why else would he be bothering to spend his time trying to learn more about us by checking out our forums?? I dont think he's been researching the things we say/use to gather shit on us.... but rather researching the therapies we are using etc to try to learn more to help us or learn more.

Hoping you feel better when you wake up.

There have been several well documented instances of contamination of vaccines and medical products with transmissable agents, despite regulation and quality control procedures in place.
Im glad he has that at least on his mind.. even if he dont seem to be considering that we may have this from a properly given to us vaccine!!! or medical procedure.

I myself had a blood transfusion when i was 4.
 
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I too have wondered if the injections of vaccines, gammaglobulin, and transfer factor given to me over 60 years has been contaminated. I have wondered if that has caused my disease or enabled it, or not. I think the Doctors should be allowed to let their minds run openly. Thats what science is all about, people hypothesising and then investigating.

Anne
 

taniaaust1

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thank you for the post gracenote :) .. and putting your letter and vouching for Summerflower (not being a Wessely school troublemaker or whatever). Your post here put my mind more at ease.

Pity there isnt a study on how many of us are using injectionable therapies.....
Is there a study on what percent get ME after vaccination??? or after blood transfusions?? if so maybe he could be replied back to nicely with that study included, i personally think he should be made aware of that info.
 
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MMR vaccines or others could have contamination too?

Also if you didn't get your blood contaminated yourself, but someone else you had blood contact or other closer contact with. Mother-child or sexual partner or it might be transmitted through casual contact.
 
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It sounds to me like someone who has been convinced that ME/CFS was psychological, who is being confronted with evidence that a large percentage have a retrovirus, and is trying to think of possible ways to reconcile those two ideas. "All those crazy hypochondriacs trying off-beat treatments behind closed doors probably picked up a retrovirus perenterally" would be one way to account for it without having to make the paradigm shift that those people might actually be sick.

I think we can expect to hear more odd theories like this as those who have been sure we're crazy try to incorporate the new reality of XMRV into their paradigm.
That is exactly what I thought and felt when I watched and read his words. Thank you for writing it down so clearly!
 

Boule de feu

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He should have stopped right here.

There have been several well documented instances of contamination of vaccines and medical products with transmissable agents. PERIOD.

I think the answer is there. He didn't have to add more. Everyone has received some type of vaccination at one point or another. We don't need to look any further.
 

Cort

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Here's a scenario. Many CFSers have adrenal issues. One common alternative treatment for 'adrenal fatigue' is 'raw porcine adrenal gland'. Yes, that a pigs adrenal gland, ground up and put into a capsule.

It's very easy to imagine that some unknown pathogen could be in there.

I have seen it in many 'adrenal support' preparations. I have used some of those products. I would bet dollars to donuts that many here have used these without even being aware they were taking raw pig glands.

I am sure he is wrong, but it's not as ludicrous as you might be thinking.
There was a paper out last year I think which kind of suggested that such could be the case. I couldn't really figure it out but I thought that was the gist of it.

Here it is:

Retrovirology. 2010 Mar 10;7:16.
Detection of a gammaretrovirus, XMRV, in the human population: open questions and implications for xenotransplantation.

Denner J.
Retrovirus induced immunosuppression, Robert Koch Institute, Nordufer 20, D-13353 Berlin, Germany. DennerJ@rki.de
Abstract

XMRV (xenotropic murine leukaemia virus-related virus) is a gammaretrovirus that has been detected in human patients with prostate carcinoma, chronic fatigue syndrome (CFS) and also in a small percentage of clinically healthy individuals. It is not yet clear whether the distribution of this virus is primarily limited to the USA or whether it is causally associated with human disease. If future investigations confirm a broad distribution of XMRV and its association with disease, this would have an impact on xenotransplantation of porcine tissues and organs. Xenotransplantation is currently being developed to compensate for the increasing shortage of human material for the treatment of tissue and organ failure but could result in the transmission of porcine pathogens. Maintenance of pathogen-free donor animals will dramatically reduce this risk, but some of the porcine endogenous retroviruses (PERVs) found in the genome of all pigs, can produce infectious virus and infect cultured human cells. PERVs are closely related to XMRV so it is critical to develop tests that discriminate between them. Since recombination can occur between viruses, and recombinants can exhibit synergism, recipients should be tested for XMRV before xenotransplantation.
 

julius

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I think that study is more about using pig parts for organ and tissue transplants, not ingesting pig parts. And as someone pointed out, the Dr. referred specifically to injections (parenteral). So neither really addresses his specific concern.
 
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When I was a patient of Dr. Endlander in NYC part of his standard treatment protocal was the injection of Hepapressin - which is a " an amino acid complex derived from Argentinean bovine liver." See link: http://www.enlander.com/treatment.html As 0f 2009, he was still prescribing this treatment along with other immuno-boosting vitamins, etc.

However, I had already been diagnosed with ME/CFS by several physicians (and specialists) before seeing him.

I don't know what it all means...I don't think enough patients have had this protocal to throw off the overwhelming numbers of positives, but I thought I would throw it out there to see what you all think.

Also, how does pork or bovine enzyme relate to a mouse retrovirus? It doesn't seem like it could jump species that easily...but I don't really understand the science.
 

redo

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During the Q&A session at the XMRV Conference this week, Dr John Mellor, Chief, Division of Infectious Diseases Director, HIV/AIDS Program, University of Pittsburgh Medical Center,

Made a confusing statement regards XMRV, he made the suggestion that XMRV could be a microepidemic being transferred parenterally, his statement from the conference is as follows.......



I read that a CFS sufferer wanted further explanation about what Dr Mellor meant and so wrote him an email, his reply i've seen posted on a few forums, is as follows.....

____________________________________________________________________________

As a physician investigator I try to keep an open mind to possibilities for why XMRV is being detected in some patients with CFS but not others. One possible "far out" explanation, for which I nor anyone else has data yet to support [bold in original], is that a product is being injected or infused into some patients that is contaminated with or derived from mouse cells containing XMRV or MLVs. There are unregulated products without quality controls being advertised and some of these may be used by patients with CFS who are desperate for relief from their symptoms.

There have been several well documented instances of contamination of vaccines and medical products with transmissable agents, despite regulation and quality control procedures in place. So, the potential for this occuring with unregulated/uncontrolled products is real and should be considered.

John

John W. Mellors, M.D.
Professor of Medicine
Chief, Division of Infectious Diseases
University of Pittsburgh School of Medicine


_______________________________________________________________________

I personally feel insulted by Dr Mellor and feel he has insulted the CFS community. He is suggesting that people in the UK who have CFS, are injecting or being infused behind closed doors, In the UK it is VERY hard to use unregulated products without quality controls, Maybe he should come and live in the UK and see how hard it is to get drugs.
We are ill....we have not injected XMRV into our bodies.
This is the strangest statement I've seen a doc make.
It's so easy to find out that he can't be right. Just ask 100 patients what they are or have been taking. If there are no common nominator (that others arern't taking), the his theory is disproven.

If his theory was right, 67% to 86.5% of the CFS patients, across america, had to be injected with the same medicine. If such a large number of patients were using a specific drug, we'd know.

On the outside Mellors looks like a smart guy, so I can't imagine what his motives for making such a statement is.
 
C

Cloud

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Well, it wouldn't be quite as ludicrous if he hadn't said "parenteral", which means by injection. The ME/CFS community is a very diverse population without a common trait that would link us to possible infection via injection, like one sees in the addict community for example. Vaccines...maybe, but then everyone would be infected via that source. I think his statement reflects a person who knows next to nothing about ME/CFS. I don't see his statement as offensive.....nor do I feel it has any place on the table of possibilities. It just reflects his need for education....lots of education.