No! I'm British and like I've said, not a retrovirologist. She certainly has some strong opinions, why would you think I'm her?
I do work with tissue culture cells though which is why I made the comment.
Endogenous Murine Leukemia Viruses: Relationship to XMRV and MLVs in Human DNA
- Thread starter Jemal
- Start date
No! I'm British and like I've said, not a retrovirologist. She certainly has some strong opinions, why would you think I'm her?
I do work with tissue culture cells though which is why I made the comment.
I can well understand why you don't want to open that whole can of worms! But I'm really pleased with your observation that scientists have become too wary of exploring these areas as a reactionary position. That's a really important observation, and I think this is a massive problem. I've observed, in the online sceptic community and within the political connections around the Science Media Centre and former Living Marxism members, the particular focus of a small but powerful group of people in suppressing investigation of these specific areas...and some of these individuals and groups have stated aims of suppressing information concerning potential adverse effects of science and technology (See Lobbywatch and Martin J. Walker's "Brave New World of Zero Risk" and "Cultural Dwarfs and Junk Journalism" for more on this). The extremism of the voices suppressing these areas is the most striking thing to me about this whole area, and it does fuel a conspiracy theory mentality in this debate.
A perusal of the National Archives "S Files" of secret medical research files - some of them now released - is also crucial to the understanding of this terrain. Bear in mind that this research has been kept from researchers as well as from the general public, and this has skewed the scientific investigations concerned (and continues to do so) - much of this information has now been released though, and the titles alone of the papers which have been kept secret in FD23 make for fascinating reading in themselves:
http://www.nationalarchives.gov.uk/...tails.asp?CATID=5955&CATLN=3&FullDetails=True
(If that link doesn't work, go to: http://www.nationalarchives.gov.uk/catalogue/ 'Go to reference' FD23, click "Browse from here" expand "FD23", and keep clicking 'Next' to page through the titles until it starts getting interesting...)
Also, if you have swallowed the line that the autism/vaccination furore was "based on faked data" then I must strongly encourage you to dig deeper below the headlines and 'official' articles on that question. Despite the spin, there's no evidence of any faking of data. That's a very serious allegation, but it has been presented as an unsubstantiated smear, and also as spin and weasel words, if you read carefully. It's really important to read and hear the other side of that particular story. I think you will be shocked if you do so - I know I was. It's really striking how the other side of the story just doesn't get air time. And although those reading the general and official press sources may feel that debate is over, and it's often presented that way, in reality the supporters of that theory remain as convinced as ever, and my perception is that the breadth of their support is continuing to grow...the idea that this question is settled is delusional IMO.
(These are all just personal opinions of course, and not Phoenix Rising policy, I hasten to emphasise...)
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- 877
Well we're going to have to agree to disagree on this, I have 2 children, I researched the subject thoroughly and decided to have them fully vaccinated and I've never seen anything since to make me think I made a mistake. I really don't think it's useful to turn this into a debate about vaccines.
Why are you here, Redruth, on this site? I'm not being unfriendly, and I think it helps to have diversity of opinion, but what do you want from us?
You mention that your sister is ill - how long has she been ill for? Are you satisfied with her treatment? Is she getting better? Does she get much support in the family? Are you here for advice on how to understand her needs?
Why do you think she has become ill?
Does her doctor understand that she really is ill, or is her medical care unsatisfactory?
I know this is off topic, you can PM me if you like.
Your coming to this site a site run by patients - suggests that you are dissatisfied like us with the standard of the medical care offered to your sister. You must realise that no research (apart from psychiatric) has been funded by governments for the past thirty years despite the massive scientific resources available to the medical world, and despite ample evidence that this is a neurological disease triggered in most cases by a viral or immunological insult. Why do you think there has been a persistent refusal to fund good quality research?
Presumably you work in cancer research if you work with cell lines. Would a cancer patient be satisfied to hear - as I did, from a well meaning specialist - that there was no point in funding research into ME because "the science was not there yet" by which he meant that the problem was too difficult as yet for modern science and the search should be for palliative treatments only, not look into cause.
What other disease would accept such an attitude?
This is why we question the underlying motives of governmental health policy.
This is not a minor disease. It causes longterm disability. It appears to be able to pass down the generations even after a long latency ie. an affected mother can pass it on to her child but the child will often only show illness at puberty. When I first got involved in the ME world this was not seen. Now it is quite noticable. Why?
Do you think it good that a disease which affects the YOUNG who normally would be the fittest group in society should be ignored and ridiculed and the province of such poor psychiatric theorising?
Should not such a disease raise serious concern and be given adequate funding for research as a potential public health emergency?
You obviously sense some of these concerns yourself or you would not come here to find outmore. Your sister would be happy with her treatment and you would feel confidence in her medical care.
But you dont do you?
You mention that your sister is ill - how long has she been ill for? Are you satisfied with her treatment? Is she getting better? Does she get much support in the family? Are you here for advice on how to understand her needs?
Why do you think she has become ill?
Does her doctor understand that she really is ill, or is her medical care unsatisfactory?
I know this is off topic, you can PM me if you like.
Your coming to this site a site run by patients - suggests that you are dissatisfied like us with the standard of the medical care offered to your sister. You must realise that no research (apart from psychiatric) has been funded by governments for the past thirty years despite the massive scientific resources available to the medical world, and despite ample evidence that this is a neurological disease triggered in most cases by a viral or immunological insult. Why do you think there has been a persistent refusal to fund good quality research?
Presumably you work in cancer research if you work with cell lines. Would a cancer patient be satisfied to hear - as I did, from a well meaning specialist - that there was no point in funding research into ME because "the science was not there yet" by which he meant that the problem was too difficult as yet for modern science and the search should be for palliative treatments only, not look into cause.
What other disease would accept such an attitude?
This is why we question the underlying motives of governmental health policy.
This is not a minor disease. It causes longterm disability. It appears to be able to pass down the generations even after a long latency ie. an affected mother can pass it on to her child but the child will often only show illness at puberty. When I first got involved in the ME world this was not seen. Now it is quite noticable. Why?
Do you think it good that a disease which affects the YOUNG who normally would be the fittest group in society should be ignored and ridiculed and the province of such poor psychiatric theorising?
Should not such a disease raise serious concern and be given adequate funding for research as a potential public health emergency?
You obviously sense some of these concerns yourself or you would not come here to find outmore. Your sister would be happy with her treatment and you would feel confidence in her medical care.
But you dont do you?
I think this response of yours regarding questions about vaccines contains 3 interesting non-sequitors, RedRuth, and I'd like to ask you to think carefully about what you've just said because you seem to be making incorrect assumptions and jumping to conclusions about the opinions of posters on this thread (myself included). Please consider whether those assumptions demonstrate a degree of prejudice on your part, because you seem to be caricaturing the discussion.
1. "we're going to have to agree to disagree on this"
Why? I don't agree that we have to disagree.
You said earlier: "There could be viral contamination of cells used to make vaccines...There should be absolute vigilance in vaccine production and no complacency." I agree with that, it pretty much sums up my own position, and indeed that's really all that any of us who have shown interest in a possible vaccine connection are saying. If you want to disagree, then please say what you disagree with!
2. "I have 2 children, I researched the subject thoroughly and decided to have them fully vaccinated and I've never seen anything since to make me think I made a mistake."
I agree with your decision too. I think that, on balance, vaccination is the safe and responsible choice for a parent to make, though I appreciate it can be a very difficult decision for some people. But why would you even suggest that this is at issue? Nobody has even begun to suggest that it would be a mistake to vaccinate one's children. All that has been said is that this is a plausible explanation for the origin of (some) ME and/or XMRV infection, and could explain the low sequence diversity of detected XMRV - and as I've said, I find the circumstantial evidence quite suggestive. It seems clear that there is a genuine newly-identified risk factor here (contamination from artificially created MLV variants) which needs investigation. But when you appear to suggest that somebody believes you made a mistake vaccinating your children, when clearly nobody suggested anything like that at all, you are presenting a logical fallacy and misrepresenting people's opinions...what you said does not follow from the earlier discussion.
3. "I really don't think it's useful to turn this into a debate about vaccines."
Who is doing so?
You raised "the autism/vaccination furore that turned out to be based on faked data", which was (unintentionally perhaps) a rather provocative comment (since the allegation of faked data doesn't stand up to scrutiny). But until that point, we had simply been discussing a genuine and plausible scenario which might explain the scientific data.
This thread is quite revealing IMO: It's really interesting to me that if someone suggests that vaccine contamination may be the explanation of low sequence diversity in detected XMRV, the default response of so many professionals seems to be very defensive and tends to caricature the position of perceived opponents in a "debate about vaccines" in a way that bears no apparent relation to what they said nor to their actual opinions. I just think that's revealing.
I'm sorry if I've not been gentle in making these points RedRuth, but you did note that the situation "has made it difficult to question the safety of vaccines which I think is a bad thing" so I think you recognise the political reaction going on here, and I just urge you to query in yourself whether you're failing here to rise above the preconceptions and polarisation of a sensitive subject, to consider the matter openly and dispassionately, and to respond to what people are actually saying rather than what you think they believe. Really, I think you've just proved the point that this is such a sensitive 'no-go' area that the professional community is on a hair trigger, and that to me suggests that it's likely that these issues are not being considered with the necessary objectivity - that seems to me a very widespread phenomenon so I hope you won't take my comments here too personally, but I do hope you'll think carefully about what you said above, and examine where it came from.
Jemal
Senior Member
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- 1,031
This was an eye-opener for me (the fact that you could see children falling ill with essentially the same diseases as their parents). Patterns do seem to emerge very slowly lately, don't they?
The following is not in reply to currer's post
By the way: I had my two children vaccinated multiple times this year as well. I have some suspicions, but like Mark said, I think having them vaccinated is still the more responsible thing to do. I can understand though why some friends of mine, who aren't even't ill, decided not to have their children vaccinated...
I think it's in humanity's interest to see if there's anything wrong with (certain) vaccinations and if yes, come up with a solution to it. Questioning vaccinations or trying to link them to a disease shouldn't be a no-go area.
SilverbladeTE
Senior Member
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- Somewhere near Glasgow, Scotland
Somethings to remember with vaccines:
1) They are produced by Pharmaceutical Corporations...do I have to post every ratbag evil thing they have done? Every week a new scandal emerges about those vermin, and they are vermin, for they've caused vast numbers of deaths for profit, and got away with it.
See the amount of faked, squelched or "lost" safety studies, selling "off label", gross screw ups in testing triggering disease outbreaks and so on.
If it was ANY other class of pharma product, no one would trust them at all, but because folk have given them to their chidlren many don't want ot hear it..."implied guilt" is a wonderfully evil marketting tool!
ie, last thing a parent ever wants to imagine is that THEY caused their own child to be harmed...pharma corps know this, makes many folk less iwlling to accept vaccines can cause harm...great sales psychology, and yes they are capable of being that deviously evil.
And of course, inflamming parents' safety fears "Buy this and SAVE YOUR CHILD!" is huge part of their marketting strategy
2) SV40 virus, so we know, for sure, at least one virus got into the Human population from vaccines.
Personally I'm betting HIV started thw same way, because they stored primates of many different species/Old and New World, for lab testing were confined together...which is crazy stupid for cross-infections.
And when things are done for profit...obviosu issues arise, don't they?
And when they are done on a vast scale you also get problems because Murphy's Law is not just a joke (ie it's inevitable that some batches will get screwed up somehow when we're talking of such enormous production numbers)
3) Pharma Corps are greedy ratbags. They see vaccines as "bargain basement medicine". hence, they never bothered to work only new, safer preservatives, still basically only have three from the 1930/40s, iirc, and they knew Thimersoal was dangerous and didn't care, and no one bothered to question the safety of multiple innoculations with it which is fundamental practical science, ie, the pharma corps and regulators are *morons* or, criminally negligent.
Then they switched to aluminium preservatives...oh great, another neurotoxin, jeesh
4) They are pushing more and more vaccines, for profit not need, iirc, recent one for childhood pneumonia??, risks from the vaccine vs the disease are about the same according to some, because the disease is incredibly rare.
5) Hubris, damn stupid Human hubris. "For every action there's an equal and opposite reaction"..wel ok it' s nto physics But there are consequences...if you remove one pathogen, you may well have a new one move in to fill it's niche.
And frankly, we Homo Sapiens don't know jack squat. Every time we bleet "this is the wonder product/idea/tech/drug!"...30 years later, we find it was a bloody nightmare because we didn't know so much as we thought we did.
6) One of the biggest real risks to kids' health is schools...we've been cutting down the number of schools, and making them bigger: more and more kids crammed together who's growing/weak immune systems are a paradise for pathogens...wonderfully stupid idea that is, blech
Added in with fast air travel, and without modern public health systems, we'd be in a hell of a state from infections.
7) Vaccines trigger strong immune responses, so they CANNOT be "safe", it's merely a question of risk vs benefit. Every time you have a vaccination, there's a tiny risk of serious harm, even death, usually (or should be) it's 100 or 1000 times less risk than the disease, but when you ge tup to total of 36 and growing number of vaccines the "Russian Roulette" numbers of risk vs benefit drop in non-linear fashion (ie vaccines need spread out more, at least, and age vs risk from pathogen and vaccine needs calculated by honest, independant experts, as too many regulators have links ot the pharma corps or hold patents etc)
Versus Smallpox, sure, huge benefit, as that was an incredibly virulent, deadly viral pandemic with no non-Human reservoirs.
Versus other diseases...it needs more honest careful appraisal.
Vaccines, and all research, should be removed entirely from the pharma corps' grasp. Most research is done by universities as it is anyway they do it for sheer love of the research itself, "blind" funding should be used, purely non-profit, ban all regulators/government using those with links to the pharma corps.
Hell personally I want private industry the hell OUT of medicine. Patients are *NOT* "customers", massive world of difference between chosing what DVD to buy form Amazon, and getting drugs to relieve pain or keep you alive.
basically to the corporations, pharmaceuticals are "extortion with menaces": they have customers who cannot refuse to pay whatever they ask because they will suffer and die if they don't.
Again, anyone who trusts the "status quo" as it is portrayed by government and the pharma corps...go see the tobacco companies and what they did and caused.
I wouldn't trust Big Business further than a I can pee upwind in a hurricane!
Vaccines should be treated like any extremely potent and dangerous drug, because they contain non-Human genetic material. Yes they are potentially incredibly useful..and potentially catastrophically dangerous way beyond what a poison is capable of, because poisons are not transmissable.
1) They are produced by Pharmaceutical Corporations...do I have to post every ratbag evil thing they have done? Every week a new scandal emerges about those vermin, and they are vermin, for they've caused vast numbers of deaths for profit, and got away with it.
See the amount of faked, squelched or "lost" safety studies, selling "off label", gross screw ups in testing triggering disease outbreaks and so on.
If it was ANY other class of pharma product, no one would trust them at all, but because folk have given them to their chidlren many don't want ot hear it..."implied guilt" is a wonderfully evil marketting tool!
ie, last thing a parent ever wants to imagine is that THEY caused their own child to be harmed...pharma corps know this, makes many folk less iwlling to accept vaccines can cause harm...great sales psychology, and yes they are capable of being that deviously evil.
And of course, inflamming parents' safety fears "Buy this and SAVE YOUR CHILD!" is huge part of their marketting strategy
2) SV40 virus, so we know, for sure, at least one virus got into the Human population from vaccines.
Personally I'm betting HIV started thw same way, because they stored primates of many different species/Old and New World, for lab testing were confined together...which is crazy stupid for cross-infections.
And when things are done for profit...obviosu issues arise, don't they?
And when they are done on a vast scale you also get problems because Murphy's Law is not just a joke (ie it's inevitable that some batches will get screwed up somehow when we're talking of such enormous production numbers)
3) Pharma Corps are greedy ratbags. They see vaccines as "bargain basement medicine". hence, they never bothered to work only new, safer preservatives, still basically only have three from the 1930/40s, iirc, and they knew Thimersoal was dangerous and didn't care, and no one bothered to question the safety of multiple innoculations with it which is fundamental practical science, ie, the pharma corps and regulators are *morons* or, criminally negligent.
Then they switched to aluminium preservatives...oh great, another neurotoxin, jeesh
4) They are pushing more and more vaccines, for profit not need, iirc, recent one for childhood pneumonia??, risks from the vaccine vs the disease are about the same according to some, because the disease is incredibly rare.
5) Hubris, damn stupid Human hubris. "For every action there's an equal and opposite reaction"..wel ok it' s nto physics
But there are consequences...if you remove one pathogen, you may well have a new one move in to fill it's niche.And frankly, we Homo Sapiens don't know jack squat. Every time we bleet "this is the wonder product/idea/tech/drug!"...30 years later, we find it was a bloody nightmare because we didn't know so much as we thought we did.
6) One of the biggest real risks to kids' health is schools...we've been cutting down the number of schools, and making them bigger: more and more kids crammed together who's growing/weak immune systems are a paradise for pathogens...wonderfully stupid idea that is, blech
Added in with fast air travel, and without modern public health systems, we'd be in a hell of a state from infections.
7) Vaccines trigger strong immune responses, so they CANNOT be "safe", it's merely a question of risk vs benefit. Every time you have a vaccination, there's a tiny risk of serious harm, even death, usually (or should be) it's 100 or 1000 times less risk than the disease, but when you ge tup to total of 36 and growing number of vaccines the "Russian Roulette" numbers of risk vs benefit drop in non-linear fashion (ie vaccines need spread out more, at least, and age vs risk from pathogen and vaccine needs calculated by honest, independant experts, as too many regulators have links ot the pharma corps or hold patents etc)
Versus Smallpox, sure, huge benefit, as that was an incredibly virulent, deadly viral pandemic with no non-Human reservoirs.
Versus other diseases...it needs more honest careful appraisal.
Vaccines, and all research, should be removed entirely from the pharma corps' grasp. Most research is done by universities as it is anyway they do it for sheer love of the research itself, "blind" funding should be used, purely non-profit, ban all regulators/government using those with links to the pharma corps.
Hell personally I want private industry the hell OUT of medicine. Patients are *NOT* "customers", massive world of difference between chosing what DVD to buy form Amazon, and getting drugs to relieve pain or keep you alive.
basically to the corporations, pharmaceuticals are "extortion with menaces": they have customers who cannot refuse to pay whatever they ask because they will suffer and die if they don't.
Again, anyone who trusts the "status quo" as it is portrayed by government and the pharma corps...go see the tobacco companies and what they did and caused.
I wouldn't trust Big Business further than a I can pee upwind in a hurricane!
Vaccines should be treated like any extremely potent and dangerous drug, because they contain non-Human genetic material. Yes they are potentially incredibly useful..and potentially catastrophically dangerous way beyond what a poison is capable of, because poisons are not transmissable.
I don't really want anything. Like I said before, I came here and several other sites - science bloggers, bad science that kind of thing - because my sister asked me to. I wanted to see the perspectives of ME sufferers, not just the perspective of scientists and medics. It seems unlikely now that my sister has ME though things are complicated, so my only real interest is academic. It's an interesting puzzle and an interesting insight into how laypeople view science and scientists. Usually the wider public aren't interested in academic squabbles.
If you want this as a forum for ME suffers by ME sufferers then that's fine by me, I'll leave. To be honest I only came back because a moderator asked me to or at least said it would be interesting to have input from a molecular biologist. I have to say that you really could do with someone who understands the research summing it up for you, I'm not knocking Cort or Bob who seem to have done a stirling job of it but with all due respect, they haven't studied the subject for the last 20 odd years. You may not like the ERV blogger's style but you can't argue with her qualification to talk on the subject of retroviruses. BTW, I'm not suggesting myself for the job, I already have a job and a family but surely there are ME sufferers who've worked in research. I think this would clear up alot of the misunderstanding that have led some of you to think there is a conspiracy theory re the Mikovits lab's work and subsequent studies.
If you want this as a forum for ME suffers by ME sufferers then that's fine by me, I'll leave. To be honest I only came back because a moderator asked me to or at least said it would be interesting to have input from a molecular biologist. I have to say that you really could do with someone who understands the research summing it up for you, I'm not knocking Cort or Bob who seem to have done a stirling job of it but with all due respect, they haven't studied the subject for the last 20 odd years. You may not like the ERV blogger's style but you can't argue with her qualification to talk on the subject of retroviruses. BTW, I'm not suggesting myself for the job, I already have a job and a family but surely there are ME sufferers who've worked in research. I think this would clear up alot of the misunderstanding that have led some of you to think there is a conspiracy theory re the Mikovits lab's work and subsequent studies.
Thanks for the reply Redruth.
No, I dont want you to leave, I think your perspective is valuable. But now I know more about your background I understand why you are coming from such a different place to most people here.
I dont think there is a conspiracy among virologists against Mikovits. I saw her at the Invest in ME conference and she looked to me as if she was thriving on all the controversy and quite able to take the intensity of the scientific debate.
What perhaps you dont understand though, is that the patients themselves have been the targets of unfair and discriminatory treatment. This is why we perceive the politics the way we do.
Until you have experienced it it is not easy to imagine the change in status and the social exclusion and stigma that goes with being a sufferer from this disease.
I'm glad for you that your sister has not got this illness. She should be treated well throughout the course of her illness. This is not the case unfortunately with ME sufferers.
No, I dont want you to leave, I think your perspective is valuable. But now I know more about your background I understand why you are coming from such a different place to most people here.
I dont think there is a conspiracy among virologists against Mikovits. I saw her at the Invest in ME conference and she looked to me as if she was thriving on all the controversy and quite able to take the intensity of the scientific debate.
What perhaps you dont understand though, is that the patients themselves have been the targets of unfair and discriminatory treatment. This is why we perceive the politics the way we do.
Until you have experienced it it is not easy to imagine the change in status and the social exclusion and stigma that goes with being a sufferer from this disease.
I'm glad for you that your sister has not got this illness. She should be treated well throughout the course of her illness. This is not the case unfortunately with ME sufferers.
Redruth,
I'm curious why your sister would ask you to look at ME sites on XMRV and also bad science etc. What was she hoping that you would learn from them?
Also a moderator asked you to come back? I must say that I'm shocked at that. Not that I mind your being here and I don't want you to leave but I would be happier if it was on your own terms and that to would be able to contribute more thinking stuff. That may be too much to ask and it's not your job to help us. We patients here just want to be well again.
If the person who thinks that a molecular biologist would be good to have on the forum would like to comment, I'd be interested to know what it is that they thought you would be contributing.
So far on all the discussions we have had it's been old ground. We've been through all of these papers before and hashed them from many angles. I'd like to see more from you and I don't mean the people who want to argue about vaccines. I'd like to see new and interesting perspectives from you but as all these papers have been discussed in depth before - will that be it? Can you do more to help please?
We need your help. Your sister may have another disease (and it's terrible that she is going through this) but we are still stuck here and forever maybe.
For example how could this virus maybe get out of the lab or the mice or whatever and into the patients. I have tested XMRV + and been ill for nearly 30 years. Of course I am going to be asking this and it's not unreasonable to do so. Your training I would hope would help answer these questions.
I'm curious why your sister would ask you to look at ME sites on XMRV and also bad science etc. What was she hoping that you would learn from them?
Also a moderator asked you to come back? I must say that I'm shocked at that. Not that I mind your being here and I don't want you to leave but I would be happier if it was on your own terms and that to would be able to contribute more thinking stuff. That may be too much to ask and it's not your job to help us. We patients here just want to be well again.
If the person who thinks that a molecular biologist would be good to have on the forum would like to comment, I'd be interested to know what it is that they thought you would be contributing.
So far on all the discussions we have had it's been old ground. We've been through all of these papers before and hashed them from many angles. I'd like to see more from you and I don't mean the people who want to argue about vaccines. I'd like to see new and interesting perspectives from you but as all these papers have been discussed in depth before - will that be it? Can you do more to help please?
We need your help. Your sister may have another disease (and it's terrible that she is going through this) but we are still stuck here and forever maybe.
For example how could this virus maybe get out of the lab or the mice or whatever and into the patients. I have tested XMRV + and been ill for nearly 30 years. Of course I am going to be asking this and it's not unreasonable to do so. Your training I would hope would help answer these questions.