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

Discussion in 'XMRV Testing, Treatment and Transmission' started by summerflower, Sep 11, 2010.

  1. Wayne

    Wayne Senior Member

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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 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.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    LMAO.. or maybe some will start thinking we do those blood brother wrist cutting bonding rituals with fellow ME brothers and sisters :p
     
  3. taniaaust1

    taniaaust1 Senior Member

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    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!!
     
  4. coxy

    coxy Senior Member

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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.
     
  5. Wayne

    Wayne Senior Member

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    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.
     
  6. Wayne

    Wayne Senior Member

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    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?

     
  7. gracenote

    gracenote All shall be well . . .

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    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:

    I do not encourage anyone to write to Dr. Mellors unless they have a clear and respectful question or comment.
     
  8. Snow Leopard

    Snow Leopard Senior Member

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    Those of us who got ill directly after an immunization and have never injected anything else can also twist his words in curious ways.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    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.

    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.
     
  10. Anne P

    Anne P

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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
     
  11. taniaaust1

    taniaaust1 Senior Member

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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.
     
  12. SickOfSickness

    SickOfSickness Senior Member

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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.
     
  13. Wasbeer

    Wasbeer

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    That is exactly what I thought and felt when I watched and read his words. Thank you for writing it down so clearly!
     
  14. Boule de feu

    Boule de feu Senior Member

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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.
     
  15. Cort

    Cort Phoenix Rising Founder

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    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

     
  16. julius

    julius Watchoo lookin' at?

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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.
     
  17. JAXintheCity

    JAXintheCity

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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.
     
  18. redo

    redo Senior Member

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    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.
     
  19. Enid

    Enid Senior Member

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    Can't take this "speculation" seriously and nor I suspect the Experts.
     
  20. Cloud

    Cloud Guest

    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.
     

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