Jemal
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Thanks Currer! Professionally I am functioning at a much lower level though, I have the feeling ME/CFS cost me IQ points.
Proposition to put the XMRV discussion here on a more profound and scientific basis
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Thanks Currer! Professionally I am functioning at a much lower level though, I have the feeling ME/CFS cost me IQ points.
Yes, it does. I find this too.
wayne:
i did not call you loud and brash....in fact u r the opposite. i said gerwyn can be loud and brash but perhaps we need some me/cfs ppl speaking up like that to keep us alive....just like the aids movement had ACT-Up and then quieter gentler advocates.
sorry u thought i was insulting u...that would be contrary to my post...which is that we should refrain from personally "attacking" other patients.
thanks,
i did not call you loud and brash....in fact u r the opposite. i said gerwyn can be loud and brash but perhaps we need some me/cfs ppl speaking up like that to keep us alive....just like the aids movement had ACT-Up and then quieter gentler advocates.
sorry u thought i was insulting u...that would be contrary to my post...which is that we should refrain from personally "attacking" other patients.
thanks,
Just started listening to the twiv recording, they sound convinced that the genesis of XMRV is now explained.
What was most interesting I thought, around minute 34 one of the discussants mentions that the type of immune activation seen in CFS is not unique and some type of immune activation is observed in a wide variety of disease states that may or may not involve active infection. They also mentioned auto-immune condition as a possibility.
kurt: What does auto-immune mean though? The concept is advanced in order to explain ideopathic states in which the immune system appears to be chronically activated, apparently inappropriately activated, and attacking various parts of the body. But what is causing the immune system to be activated? Once I start to think about this, informed by the possibilities that XMRV highlights, it occurs to me, at least, that this idea that the immune system is misrecognising part of the body as an enemy to be attacked could be quite wrong. It seems at least as likely that some unknown, persistent, near-impossible-to-kill pathogen is the cause of the chronic immune activation - and the attack on the body itself is just a byproduct of this chronic activation. Maybe the body is doing the best it can in the face of something it can't kill, and can just barely keep in check; the collateral damage can't be helped, it's the lesser of two evils. I realise this is a very informal argument but as soon as I entertained the idea, it kind of leaps off the page to me that the "auto-immune" concept is based on the assumption that there's no unknown pathogen provoking the immune response.
As regards the contentious issues highlighted earlier...
- I'd first like to thank everyone for facing a contentious issue without escalating it into an aggressive argument - commendable restraint has been shown as usual, so thank you all once again for that.
- I also want to clarify that the rules about personal attacks are - in general - mostly applied to forum members, and not nearly as stringently to those outside of our community, simply because our priority is that we don't want to be fighting amongst ourselves here, and because we strive to make this place as mutually supportive and stress-free a community as we can, whilst at the same time allowing for an open debate. That said, although Gerwyn is no longer a member of this community, by choice, all the same it isn't edifying for us to be attacking other patients, Gerwyn is not here to mount a defence, and the question will inevitably provoke strong feelings on both sides, so I want to echo Kurt's appeal to focus the discussion on other matters - I think the point has been made, and countered well, and since the whole thread would need extensive editing to make any sense out of it now if we were to edit the first post, I do hope we can leave this as it is now please and move on to the more substantive issues raised.
Waverunner raises an important question for me (though I think I'm emphasising a rather different point): there is a real danger that the issue of XMRV divides our community down the middle - indeed that's (arguably) already happened once with the splitting off of mecfsforums - and obviously this is not what we all need. As this controversy drags on - and it may drag on for quite some time to come - this does seem like something we need to come to terms with.
So, my quick answer to those issues...firstly that Phoenix Rising is, and always has been, a broad and diverse forum, and there are strong opinions held here on both sides of most issues, and mostly without anything like the kind of animosity and nastiness one sees on most public forums - that's a tribute to everyone here that that's the case. So I'd like to think we are part of the answer to the question.
For myself, I like to think there's no problem for me here, simply because of the solidarity I feel with anyone with ME/CFS, which always seems much more important to me than any given argument. This illness has made me very irritable and aggressive at times, and wanting to be forgiven for that, I find it easy to forgive others...at the same time, I'm aware that none of us need stress and strife in the interests of our health, so we ask for high standards of behaviour here whilst understanding how hard that can sometimes be - we all lose our tempers and cross the line sometimes, and I'm no exception.
And the other pointer I'd like to put forward, which doesn't just apply to the XMRV issue: an appeal to all sides in any dispute to look for the areas of agreement, focus on what we have in common, and try hard to put differences aside to work together on those areas. Strongly held opinions needn't be sacrificed, but they can often be put to one side in the interests of campaigning together on the issues we do agree about, of which there are many. If not a lowest common denominator, than perhaps a highest common factor - look for what you have in common, what you agree about, and try to do something positive with that agreement. Showing unity is not about agreeing about everything, but about focusing on the areas where you do agree and combining forces in pursuit of common goals.
So: if there is to be a dialogue between pro-XMRV and anti-XMRV camps, then that dialogue would probably do well to avoid the subject of XMRV completely and address other issues - and of course we do that here on PR every day.
As regards the contentious issues highlighted earlier...
- I'd first like to thank everyone for facing a contentious issue without escalating it into an aggressive argument - commendable restraint has been shown as usual, so thank you all once again for that.
- I also want to clarify that the rules about personal attacks are - in general - mostly applied to forum members, and not nearly as stringently to those outside of our community, simply because our priority is that we don't want to be fighting amongst ourselves here, and because we strive to make this place as mutually supportive and stress-free a community as we can, whilst at the same time allowing for an open debate. That said, although Gerwyn is no longer a member of this community, by choice, all the same it isn't edifying for us to be attacking other patients, Gerwyn is not here to mount a defence, and the question will inevitably provoke strong feelings on both sides, so I want to echo Kurt's appeal to focus the discussion on other matters - I think the point has been made, and countered well, and since the whole thread would need extensive editing to make any sense out of it now if we were to edit the first post, I do hope we can leave this as it is now please and move on to the more substantive issues raised.
Waverunner raises an important question for me (though I think I'm emphasising a rather different point): there is a real danger that the issue of XMRV divides our community down the middle - indeed that's (arguably) already happened once with the splitting off of mecfsforums - and obviously this is not what we all need. As this controversy drags on - and it may drag on for quite some time to come - this does seem like something we need to come to terms with.
So, my quick answer to those issues...firstly that Phoenix Rising is, and always has been, a broad and diverse forum, and there are strong opinions held here on both sides of most issues, and mostly without anything like the kind of animosity and nastiness one sees on most public forums - that's a tribute to everyone here that that's the case. So I'd like to think we are part of the answer to the question.
For myself, I like to think there's no problem for me here, simply because of the solidarity I feel with anyone with ME/CFS, which always seems much more important to me than any given argument. This illness has made me very irritable and aggressive at times, and wanting to be forgiven for that, I find it easy to forgive others...at the same time, I'm aware that none of us need stress and strife in the interests of our health, so we ask for high standards of behaviour here whilst understanding how hard that can sometimes be - we all lose our tempers and cross the line sometimes, and I'm no exception.
And the other pointer I'd like to put forward, which doesn't just apply to the XMRV issue: an appeal to all sides in any dispute to look for the areas of agreement, focus on what we have in common, and try hard to put differences aside to work together on those areas. Strongly held opinions needn't be sacrificed, but they can often be put to one side in the interests of campaigning together on the issues we do agree about, of which there are many. If not a lowest common denominator, than perhaps a highest common factor - look for what you have in common, what you agree about, and try to do something positive with that agreement. Showing unity is not about agreeing about everything, but about focusing on the areas where you do agree and combining forces in pursuit of common goals.
So: if there is to be a dialogue between pro-XMRV and anti-XMRV camps, then that dialogue would probably do well to avoid the subject of XMRV completely and address other issues - and of course we do that here on PR every day.
heapsreal
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i dont care if they do disprove xmrv, just as long as they keep looking for a cause, especially as there is alot of immune dysfunction evidence in cfs/me. I just hope they dont call it quits on cfs and relegate it to the pyschobabblers. Also those for xmrv should possibly start looking at treatment trials, this would help prove their point and maybe going on unknown to us.
cheers!!!
cheers!!!
I think what is needed is more of the Cheney / Mikovits interviews. They were able to have a conversation that lay people like me could understand without compromising any publications that might be forthcoming.
I do not know the person you have been discussing personally, but when I have had a question about the science, that person has been willing to explain the science to me in a way that I can understand, and for that I am very grateful. He didn't have to do that, he is poorly himself, but he went out of his way to help me, another poorly person. He probably answers the same question over and over again, but he still had time to help me, a nobody.
That should be said of others too, those that do the 'donkey work' so that dummies like me have a better understanding of the issues surrouding this dreadful disease.
Kind regards, Mark
I do not know the person you have been discussing personally, but when I have had a question about the science, that person has been willing to explain the science to me in a way that I can understand, and for that I am very grateful. He didn't have to do that, he is poorly himself, but he went out of his way to help me, another poorly person. He probably answers the same question over and over again, but he still had time to help me, a nobody.
That should be said of others too, those that do the 'donkey work' so that dummies like me have a better understanding of the issues surrouding this dreadful disease.
Kind regards, Mark
Undisclosed
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It's a difficult situation, a very emotional situation at that. I have chosen to divest myself of the emotions and look at the research and frankly it's not looking good for XMRV at this point but I am waiting for Lipkin to publish his research. I do think some people have gone way too far in that anybody who is not "for" XMRV has been demonized. Is it possible to hate somebody you don't even know, you can dislike the results of their research but to post diatribe after diatribe about different researchers on a forum is a bit much (not talking about this forum). I contacted a virologist a while back to ask a few questions about XMRV, the answer I got was we are not going to respond due to prior replies to interested patients being posted on forums with the information twisted into something we didn't actually say (not this forum). I can see their point. I have seen virologists trying to post information about the state of the research and being called troll and baby killer and all sorts of unkind things -- just for trying to post how the testing actually works or why people may be misinformed about something etc. This is damaging to the community because rather than using the knowledge of somebody positively, they get insulted and has a group we miss out on puzzle pieces.
Maybe Cort could find a virologist who would be willing to field some questions, preferably a virologist who is not involved in the current research (so nobody can accuse them of taking sides) just to give a professionals point of view of the state of current research regarding XMRV.
The problem with patients trying to figure stuff out -- confirmation bias -- if you believe in something, you will seek out information that confirms your beliefs and ignore the rest.
I would actually prefer CFS not to be caused by a retrovirus because there is no magical cure just a life time of ARV's whose side-effects can cause a heck of a lot of damage. If XMRV is not the cause, then research will move on. Even the WPI has been doing research into other things judging by their research page.
If XMRV is found to be a cause or a contributing factor to CFS, I wonder how terribly ill people who test negative will be viewed, will the psychobabblers will have a field day with these people?
I am not for or against XMRV, I am for continuing research.
Maybe Cort could find a virologist who would be willing to field some questions, preferably a virologist who is not involved in the current research (so nobody can accuse them of taking sides) just to give a professionals point of view of the state of current research regarding XMRV.
The problem with patients trying to figure stuff out -- confirmation bias -- if you believe in something, you will seek out information that confirms your beliefs and ignore the rest.
I would actually prefer CFS not to be caused by a retrovirus because there is no magical cure just a life time of ARV's whose side-effects can cause a heck of a lot of damage. If XMRV is not the cause, then research will move on. Even the WPI has been doing research into other things judging by their research page.
If XMRV is found to be a cause or a contributing factor to CFS, I wonder how terribly ill people who test negative will be viewed, will the psychobabblers will have a field day with these people?
I am not for or against XMRV, I am for continuing research.
this is a good point. most breakthroughs actually come from grad students, I'm told, because experts have inadvertently adopted ingrained thinking patterns (of course, their professors get the credit!
)
Wayne
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Silent Saboteurs: Unmasking Our Own Oral Spirochetes as the Key to Saving Trillions
Hi Mark,
I've had similar thoughts regarding the term "auto-immune". I've been reading a fairly fascinating book recently (which connects with my Lyme diagnosis) which implicates various kinds of spirochetal infections as possible reasons for "auto-immune" responses. It's entitled:
The Silent Saboteurs: Unmasking Our Own Oral Spirochetes as the Key to Saving Trillions
This book offers some provocative hypotheses regarding this issue, which actually makes a lot of sense to me. A part of this book describes how spirochetes, which are very difficult to detect and identify, are able to embed themselves in virtually all parts of our bodies, with a special affinity for the brain and neurological system. There's now evidence which shows spirochetal DNA integrated within the brain cells of people. I bet the immune system does not like that one bit. Anyway, thought I'd pass this along.
Navid and Angela, thanks for your earlier replies directed to me.
Best Regards, Wayne
Hi Mark,
I've had similar thoughts regarding the term "auto-immune". I've been reading a fairly fascinating book recently (which connects with my Lyme diagnosis) which implicates various kinds of spirochetal infections as possible reasons for "auto-immune" responses. It's entitled:
The Silent Saboteurs: Unmasking Our Own Oral Spirochetes as the Key to Saving Trillions
This book offers some provocative hypotheses regarding this issue, which actually makes a lot of sense to me. A part of this book describes how spirochetes, which are very difficult to detect and identify, are able to embed themselves in virtually all parts of our bodies, with a special affinity for the brain and neurological system. There's now evidence which shows spirochetal DNA integrated within the brain cells of people. I bet the immune system does not like that one bit. Anyway, thought I'd pass this along.
Navid and Angela, thanks for your earlier replies directed to me.
Best Regards, Wayne
Mark is quite right.
"Auto -immune" is an unexplained medical category itself.
Over the years theories have been advanced that there are undiscovered pathogens causing the body to go into a hypervigilant state and attack itself. So a disease could be virally caused AND be "auto immune".
There has been a lot of work to look for a viral cause for rheumatoid arthritis, for example, where the body attacks joints and ligaments, and there are many signs of inflammation and immune activation in the body. RA also has a familial pattern of spread grandparents - grandchildren, that sort of thing.
I think this is another area where candidate viruses could not be confirmed by PCR. (But we now know how tricky PCR is.) So this area of research seems stalled both for RA and lupus.
This was suggested early in the XMRV debate, when the idea came up that XMRV may not be pathogenic in itself, but that proteins expressed from cells it infected could be recognised on the cell surface and be attacked by the immune system, giving rise to the disease state we recognise as CFS/ME.
The question that needs to be resolved is WHY? Why is this disease (ME/CFS) spreading and passing down in families?
Why is there an association with autism? Is autism auto immune too?
Auto-immune diseases should not rise in prevalence in the population, as ME/CFS is, and if they do there is a problem that needs to be looked at. They also are not associated with cancers, as lymphoma is in CFS.
What about the prostate cancer/breast cancer connection to XMRV, the tripling of prostate cancer in the last generation,the doubling of lymphoma, the increase by a half again of breast cancer? A womans lifetime chance of breast cancer is now one in eight.
These are not auto-immune.
No, there are much bigger questions that need to be answered here. "Auto-immune" will not do it.
You need to look for answers to the whole problem, not partial and incomplete solutions.
"Auto -immune" is an unexplained medical category itself.
Over the years theories have been advanced that there are undiscovered pathogens causing the body to go into a hypervigilant state and attack itself. So a disease could be virally caused AND be "auto immune".
There has been a lot of work to look for a viral cause for rheumatoid arthritis, for example, where the body attacks joints and ligaments, and there are many signs of inflammation and immune activation in the body. RA also has a familial pattern of spread grandparents - grandchildren, that sort of thing.
I think this is another area where candidate viruses could not be confirmed by PCR. (But we now know how tricky PCR is.) So this area of research seems stalled both for RA and lupus.
This was suggested early in the XMRV debate, when the idea came up that XMRV may not be pathogenic in itself, but that proteins expressed from cells it infected could be recognised on the cell surface and be attacked by the immune system, giving rise to the disease state we recognise as CFS/ME.
The question that needs to be resolved is WHY? Why is this disease (ME/CFS) spreading and passing down in families?
Why is there an association with autism? Is autism auto immune too?
Auto-immune diseases should not rise in prevalence in the population, as ME/CFS is, and if they do there is a problem that needs to be looked at. They also are not associated with cancers, as lymphoma is in CFS.
What about the prostate cancer/breast cancer connection to XMRV, the tripling of prostate cancer in the last generation,the doubling of lymphoma, the increase by a half again of breast cancer? A womans lifetime chance of breast cancer is now one in eight.
These are not auto-immune.
No, there are much bigger questions that need to be answered here. "Auto-immune" will not do it.
You need to look for answers to the whole problem, not partial and incomplete solutions.
Jemal
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I have posted this before and will post again: I don't believe the immune system, which served us for so many generations, is now attacking our own bodies, without good reason. I have the feeling many autoimmune diseases might be caused by pathogens we just can't detect. There's also some research going on to see if ERV's are the cause.
In Vitro Infidelium
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this is a good point. most breakthroughs actually come from grad students, I'm told, because experts have inadvertently adopted ingrained thinking patterns (of course, their professors get the credit!
This happens because it's the Phd students who are designing and carrying out the bulk of lower cost (big project frontiers of knowledge stuff has not so much space for studentships) novel research, which are supervised by Professors, thus a Phd project is shared by student and supervisor and both are credited with any 'success'. This is an important point for advocacy for research into M.E/CFS because if we wanted to see more basic lab work done on blood/tissue from M.E/CFS affected people, positively engaging with Phd students may actually yield that, rather than just relying on the Directors of Institutes to put in bids for major projects.
IVI
I hope that you are not insinuating that for those of us who have read the papers and judge on balance that XMRV could possibly be a cause of this disese or at least a major player, or worthy of more research to show exactly, are emotional and not capable of the same type of dispassionate observation?
I've read every research paper, yes it takes me a while, spoken by email and in person to some of the scientists when I needed help and I cannot see any reason why the findings of the original Science paper should be treated with more caution.
When it boiled down to it, people have genuine opinions based on careful observation. We have just reached different conclusions and emotions don't necessarily play a part in one side and not the other here.
Undisclosed
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UKXMRV -- no I am not insinuating anything. People can look at the research in any manner they see fit. I felt the need to leave the emotions behind and just look at the research. When the Mikovits study first came out, I was happy that somebody was actually finally coming up with what seemed like answers. Then the negative studies came out and I found myself not even wanting to consider them because that would mean a loss of hope. I followed conversations on the internet about how bad the studies were, how researchers were being dishonest etc. It was honestly getting stressful. So I read all the studies, looking at methods, results, conclusions etc -- dispassionately, and believe you me that is difficult to do when you are emotionally invested in the results.
Obviously I can make no judgements about whether people "are emotional and not capable of the same type of dispassionate observation?" I realized that my emotions were totally taking over and decided to put them aside. It really did help. I am still on the fence about XMRV -- some days I read a new research piece or blog and think "hey", that makes sense and I fall off the fence to the XMRV side, then somebody makes a good counter point, and I am lying on the other side of the fence. It's actually easier for me to sit on the fence right now and await further studies.
When I say, it's not looking good for XMRV right now, it doesn't mean it's over.
Obviously I can make no judgements about whether people "are emotional and not capable of the same type of dispassionate observation?" I realized that my emotions were totally taking over and decided to put them aside. It really did help. I am still on the fence about XMRV -- some days I read a new research piece or blog and think "hey", that makes sense and I fall off the fence to the XMRV side, then somebody makes a good counter point, and I am lying on the other side of the fence. It's actually easier for me to sit on the fence right now and await further studies.
When I say, it's not looking good for XMRV right now, it doesn't mean it's over.
KJM, Thank you for the kind reply. With respect I think that you are missing the point of my reply to you. You are not alone in being able to view the literature in an unemotional way. We have just come to view things with different opinions.
For you it is safer on the fence rather than being thrown about on a rollercoaster. That's understandable. Not everyone however, is being thrown about as every new development occurs because they can read the science, then discard the obvious bogus arguments or put to one side the arguments that need more work.
While I do sympathise that your emotions were taking over and appreciate your candour, please don't assume that was the case for the rest of us.
This is not the first retroviral saga I have lived through. I saw how it worked the first time, knew that there would be a battle, knew that different virologists would do and say different things. I expected this to all happen so I have been ready to examine each piece of evidence as it came forward, examine where it came from and look for any sub-plots.
I've also shown the XMRV data to friends and family members who are scientists.
When you say that you don't think things are looking good for XMRV (but not over), please bear in mind that other dispassionate and analytical observers don't agree with you. For some people who are reading the negative studies and negative comments the lack of proof, lack of replications and assumptions aren't damaging the original Science paper.
We all want to know the truth here and being able to weed out the spin and BS from the science is hard work.
For you it is safer on the fence rather than being thrown about on a rollercoaster. That's understandable. Not everyone however, is being thrown about as every new development occurs because they can read the science, then discard the obvious bogus arguments or put to one side the arguments that need more work.
While I do sympathise that your emotions were taking over and appreciate your candour, please don't assume that was the case for the rest of us.
This is not the first retroviral saga I have lived through. I saw how it worked the first time, knew that there would be a battle, knew that different virologists would do and say different things. I expected this to all happen so I have been ready to examine each piece of evidence as it came forward, examine where it came from and look for any sub-plots.
I've also shown the XMRV data to friends and family members who are scientists.
When you say that you don't think things are looking good for XMRV (but not over), please bear in mind that other dispassionate and analytical observers don't agree with you. For some people who are reading the negative studies and negative comments the lack of proof, lack of replications and assumptions aren't damaging the original Science paper.
We all want to know the truth here and being able to weed out the spin and BS from the science is hard work.
KJM,
Your post assumes that we see a fair scientific debate going forward about XMRV.
I do not see a fair debate. I live in the UK and the Alter paper, for example, is not acknowledged by our government. I do not expect the other positive XMRV papers to be acknowledged here either - the Bieger or Hanson papers.
What I do see happening, is two narratives developing, one for informed insiders - scientists, government health employees, the odd patient who is able to keep up, and another totally spurious one for public consumption about contamination.
If you follow the research at the retroviral conference going on now, there is ample evidence that XMRV is being taken very seriously indeed. But that is not what gets into the press releases.
How are we to hold our public servants and governments to account for the decisions they make on our behalf if such a double standard is allowed to continue without protest?
You seem very unperceptive about these obviously fraudulent proceedings. You cannot however require that everyone else be as unsuspecting as you, especially when as patients we are always the ones to pay for the political shenannegans that go on around CFS/ME (a chronic tiredness which somehow kills the odd unlucky patient)
Your post assumes that we see a fair scientific debate going forward about XMRV.
I do not see a fair debate. I live in the UK and the Alter paper, for example, is not acknowledged by our government. I do not expect the other positive XMRV papers to be acknowledged here either - the Bieger or Hanson papers.
What I do see happening, is two narratives developing, one for informed insiders - scientists, government health employees, the odd patient who is able to keep up, and another totally spurious one for public consumption about contamination.
If you follow the research at the retroviral conference going on now, there is ample evidence that XMRV is being taken very seriously indeed. But that is not what gets into the press releases.
How are we to hold our public servants and governments to account for the decisions they make on our behalf if such a double standard is allowed to continue without protest?
You seem very unperceptive about these obviously fraudulent proceedings. You cannot however require that everyone else be as unsuspecting as you, especially when as patients we are always the ones to pay for the political shenannegans that go on around CFS/ME (a chronic tiredness which somehow kills the odd unlucky patient)
Bob
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To answer the opening post, although it seems like a good idea on the surface, in reality we're not going to get any consistent answers if we ask scientists for more information or for their opinions. We would get as many different answers as the number of scientists who we asked. And they can't actually tell us what their latest findings are anyway, because they can't usually publicise their results before they publish their papers.
Scientists all disagree with each other all of the time. Occasionally a general consensus is reached, but that still doesn't make the consensus-view a fact. Long-held consensus views are often over-turned after many years, when there's a breakthrough with new technology which gives us unexpected information about something we previously thought was fact.
I'm not saying that all scientists can't be trusted. Far from it. I'm just saying that they are not necessarily more objective or better informed than well informed 'expert patients'. Some scientists are not particularly objective, not particularly trustworthy and not particularly well informed, especially when it comes to ME and XMRV.
I think that there are many objective and well informed patients on this forum who are able to interpret the research results, and will be able to give more sensible answers than we would get from some of the scientists, many of whom have their own agendas, and their own biases anyway. But we aren't going to get a consensus between the members of this forum anymore than there is between the scientists.
Scientific research findings always needs to be viewed with a healthy, honest, informed, critical skepticism, and it seems to be often down to the patient community to take on that role in the case of ME research.
There are helpful and unhelpful scientists and helpful and unhelpful patients. There's a mixed bag of each. And it can be very subjective when we decide which category we personally assign people to.
Some patient advocates are very vocal and are more assertive or aggressive than others. But it's a subjective point of view whether or not that approach is helpful to our community in the long run.
My own opinion is that if we all sit back waiting for establishment to find us a cure, then we will just be forgotten, as we have been for the past 25 years. Worse still, if we sit back and don't scrutinise scientific research papers, then we will be subjected to the likes of the PACE Trial for ever more.
Are we supposed to say "Thank you, I'm so very grateful", when we are presented with such a flawed study as the PACE Trial, or when 'objective' scientists say "There is no XMRV, it's time to move on" (when clearly it isn't) or when the editors of prestigious journals, such as the Lancet, accuse the ME patient community of mounting emotionally motivated orchestrated campaigns against their 'dispassionate and objective' science (The PACE Trial), when it turns out that they didn't even use an independent statistician to check the data in the 'fast-tracked' study, and when we actually see the letters sent in from the patient community they are actually objective, science-based rebuttals, and not unscientific emotional rants as the editor would have us believe. (Note that there have already been two significant corrections made by the authors and publishers of the PACE Trial, as a direct result of the interventions of patient advocates.)
The PACE Trial is a study which accuses ME patients of perpetuating their own psychiatric illness due to a fear of activity; A study where CBT actually increased disability in the participants, as measured by the only objective test in the study; A study where after a year of practising GET, patients could walk about half as far as elderly healthy people in the 6 minute walking distance test; A study where GET and CBT only helped 15% of participants at an average of a 10% reduction on the Chalder fatigue scale but was declared a resounding success; A study in which 47% of participants had psychiatric illnesses.
The PACE Trial isn't just unhelpful, it's dangerous, and the results cannot be safely extrapolated to the wider ME community. And yet the headlines, prompted and encouraged by the authors of the PACE Trial, are: "Exercise cures ME", or words to that effect.
I believe that we should also not sit back when scientists like Coffin tell us that XMRV is a recombination event that has definitely (1 in a trillion chance) only ever happened once, in a single prostate cancer cell line, and could never have happened on any other occasion, and that all XMRV gene sequences ever detected are as a direct result of contamination from this cell line. I know of about 4 flaws in that argument already. These are flaws that the Science editors obviously weren't aware of when they published their 'expression of concern' so soon after the Coffin study was published. I think the Science editors are already looking rather stupid now that we have access to the new CDC study abstract which refutes Coffin's conclusions.
I personally believe that we have to be very vocal and forthright to keep the establishment on their toes.
Maybe some patients make some of us feel uncomfortable at times, because of their attitude, but again, it's subjective whether or not they are helping the community in the long run. And I can't see us all ever agreeing on this point, so it's probably not worth discussing it very much.
When some scientists point the finger at the patient community, and attempt to blame us for the lack of research being carried out into CFS/ME, then I don't really see how that is helpful or constructive. To me, it comes across as a form of bullying, sometimes based on ignorance, but maybe sometimes intended to intimidate. Maybe some scientists do feel put under pressure and scrutiny from the patient population, but is that necessarily a bad thing?
With regards to XMRV, when people say it's not looking good right now, I disagree entirely. It's a slow process, but the scientific interest in XMRV is still there, and people are working on it quietly but steadily.
Every month we hear about more research developments, which bring more knowledge to the table. I'm interested in the science, and the science tells me that there is still a lot more to find out about XMRV.
There were 19 XMRV-related abstracts published at the recent conference on retroviruses. This suggests that the scientific interest in XMRV is very high, and the knowledge about XMRV is increasing, possibly exponentially. (http://forums.phoenixrising.me/show...ce+on+Human+Retrovirology+-+List+of+Abstracts)
We are far too early in the journey of XMRV research to come to any conclusions about it.
If it is proven that XMRV isn't associated with ME, then that's fine by me, but we are a very long way from that point right now.
If we include the unpublished Hanson and Bieger studies, then we have about 7 definite positive XMRV/PMRV studies right now, including prostate cancer studies. If we include less conclusive positive studies, such as Switzer's work, then we have more positive studies.
The negative studies are interesting, and they raise lots of questions, but they don't really move the field forwards, except to tell us how not to find XMRV. The contamination theories are also helpful in order to move the science forwards, but so far none of them are conclusive, and as more evidence and knowledge is gathered, they look increasingly weak, in my opinion. The Coffin cell-line paper, for example, has already been superseded with a variety of new evidence.
Science is a messy business. The only thing that moves science forwards is when there isn't a consensus. If everybody agreed with each other all of the time, then there wouldn't every be anybody who came along to rock the boat and turn long-established beliefs upside down.
Scientists all disagree with each other all of the time. Occasionally a general consensus is reached, but that still doesn't make the consensus-view a fact. Long-held consensus views are often over-turned after many years, when there's a breakthrough with new technology which gives us unexpected information about something we previously thought was fact.
I'm not saying that all scientists can't be trusted. Far from it. I'm just saying that they are not necessarily more objective or better informed than well informed 'expert patients'. Some scientists are not particularly objective, not particularly trustworthy and not particularly well informed, especially when it comes to ME and XMRV.
I think that there are many objective and well informed patients on this forum who are able to interpret the research results, and will be able to give more sensible answers than we would get from some of the scientists, many of whom have their own agendas, and their own biases anyway. But we aren't going to get a consensus between the members of this forum anymore than there is between the scientists.
Scientific research findings always needs to be viewed with a healthy, honest, informed, critical skepticism, and it seems to be often down to the patient community to take on that role in the case of ME research.
There are helpful and unhelpful scientists and helpful and unhelpful patients. There's a mixed bag of each. And it can be very subjective when we decide which category we personally assign people to.
Some patient advocates are very vocal and are more assertive or aggressive than others. But it's a subjective point of view whether or not that approach is helpful to our community in the long run.
My own opinion is that if we all sit back waiting for establishment to find us a cure, then we will just be forgotten, as we have been for the past 25 years. Worse still, if we sit back and don't scrutinise scientific research papers, then we will be subjected to the likes of the PACE Trial for ever more.
Are we supposed to say "Thank you, I'm so very grateful", when we are presented with such a flawed study as the PACE Trial, or when 'objective' scientists say "There is no XMRV, it's time to move on" (when clearly it isn't) or when the editors of prestigious journals, such as the Lancet, accuse the ME patient community of mounting emotionally motivated orchestrated campaigns against their 'dispassionate and objective' science (The PACE Trial), when it turns out that they didn't even use an independent statistician to check the data in the 'fast-tracked' study, and when we actually see the letters sent in from the patient community they are actually objective, science-based rebuttals, and not unscientific emotional rants as the editor would have us believe. (Note that there have already been two significant corrections made by the authors and publishers of the PACE Trial, as a direct result of the interventions of patient advocates.)
The PACE Trial is a study which accuses ME patients of perpetuating their own psychiatric illness due to a fear of activity; A study where CBT actually increased disability in the participants, as measured by the only objective test in the study; A study where after a year of practising GET, patients could walk about half as far as elderly healthy people in the 6 minute walking distance test; A study where GET and CBT only helped 15% of participants at an average of a 10% reduction on the Chalder fatigue scale but was declared a resounding success; A study in which 47% of participants had psychiatric illnesses.
The PACE Trial isn't just unhelpful, it's dangerous, and the results cannot be safely extrapolated to the wider ME community. And yet the headlines, prompted and encouraged by the authors of the PACE Trial, are: "Exercise cures ME", or words to that effect.
I believe that we should also not sit back when scientists like Coffin tell us that XMRV is a recombination event that has definitely (1 in a trillion chance) only ever happened once, in a single prostate cancer cell line, and could never have happened on any other occasion, and that all XMRV gene sequences ever detected are as a direct result of contamination from this cell line. I know of about 4 flaws in that argument already. These are flaws that the Science editors obviously weren't aware of when they published their 'expression of concern' so soon after the Coffin study was published. I think the Science editors are already looking rather stupid now that we have access to the new CDC study abstract which refutes Coffin's conclusions.
I personally believe that we have to be very vocal and forthright to keep the establishment on their toes.
Maybe some patients make some of us feel uncomfortable at times, because of their attitude, but again, it's subjective whether or not they are helping the community in the long run. And I can't see us all ever agreeing on this point, so it's probably not worth discussing it very much.
When some scientists point the finger at the patient community, and attempt to blame us for the lack of research being carried out into CFS/ME, then I don't really see how that is helpful or constructive. To me, it comes across as a form of bullying, sometimes based on ignorance, but maybe sometimes intended to intimidate. Maybe some scientists do feel put under pressure and scrutiny from the patient population, but is that necessarily a bad thing?
With regards to XMRV, when people say it's not looking good right now, I disagree entirely. It's a slow process, but the scientific interest in XMRV is still there, and people are working on it quietly but steadily.
Every month we hear about more research developments, which bring more knowledge to the table. I'm interested in the science, and the science tells me that there is still a lot more to find out about XMRV.
There were 19 XMRV-related abstracts published at the recent conference on retroviruses. This suggests that the scientific interest in XMRV is very high, and the knowledge about XMRV is increasing, possibly exponentially. (http://forums.phoenixrising.me/show...ce+on+Human+Retrovirology+-+List+of+Abstracts)
We are far too early in the journey of XMRV research to come to any conclusions about it.
If it is proven that XMRV isn't associated with ME, then that's fine by me, but we are a very long way from that point right now.
If we include the unpublished Hanson and Bieger studies, then we have about 7 definite positive XMRV/PMRV studies right now, including prostate cancer studies. If we include less conclusive positive studies, such as Switzer's work, then we have more positive studies.
The negative studies are interesting, and they raise lots of questions, but they don't really move the field forwards, except to tell us how not to find XMRV. The contamination theories are also helpful in order to move the science forwards, but so far none of them are conclusive, and as more evidence and knowledge is gathered, they look increasingly weak, in my opinion. The Coffin cell-line paper, for example, has already been superseded with a variety of new evidence.
Science is a messy business. The only thing that moves science forwards is when there isn't a consensus. If everybody agreed with each other all of the time, then there wouldn't every be anybody who came along to rock the boat and turn long-established beliefs upside down.
Jemal
Senior Member
- Messages
- 1,031
Ok, I can't help myself anymore. Everytime I see that quote, I want to start singing.
"The chances of anything coming from mars are a million to one. But still they come."
[video=youtube;lqvwxvCOSH4]http://www.youtube.com/watch?v=lqvwxvCOSH4[/video]
It was a scientist who said the first part