Lipkin bad news folks
- Thread starter pollycbr125
- Start date
He has now responded with another blog:
Extracts: "The gist of most of the comments seems to be that anyone who suggests a psychiatric cause for this condition has some sort of sinister motivation. [...] My point was to highlight the quite extraordinary degree of vilification suffered by well-meaning doctors who dare to question the viral hypothesis and suggest alternative causes, including psychiatric ones." (I had to correct a few spelling errors so perhaps his response was rushed).
Obviously he does not really understand the criticism of his previous blog.
Extracts: "The gist of most of the comments seems to be that anyone who suggests a psychiatric cause for this condition has some sort of sinister motivation. [...] My point was to highlight the quite extraordinary degree of vilification suffered by well-meaning doctors who dare to question the viral hypothesis and suggest alternative causes, including psychiatric ones." (I had to correct a few spelling errors so perhaps his response was rushed).
Obviously he does not really understand the criticism of his previous blog.
I cant remember where it is but Lipkin mentions the 2/3 with polyclonal b-cell activation in the Japanese patients with bornavirus both in the press conference and in the interview with Racaniello.
Bornavirus disease (neurotropic) here;- http://en.wikipedia.org/wiki/Borna_disease
In the Racaniello interview Lipkin made a comment that the original authors of the two positive studies had been forced by the journals to retract - and were reluctant to do so despite public claims otherwise.
This was one of the motives for doing a properly powered study with all the original authors - because forced retractions always raise suspicion and resentment.
He also made an amusing remark about the necessity of fixing beforehand your positive and negative criteria and not changing them - which made me laugh as I was reminded of the manipulations of the PACE trial.
Bornavirus disease (neurotropic) here;- http://en.wikipedia.org/wiki/Borna_disease
In the Racaniello interview Lipkin made a comment that the original authors of the two positive studies had been forced by the journals to retract - and were reluctant to do so despite public claims otherwise.
This was one of the motives for doing a properly powered study with all the original authors - because forced retractions always raise suspicion and resentment.
He also made an amusing remark about the necessity of fixing beforehand your positive and negative criteria and not changing them - which made me laugh as I was reminded of the manipulations of the PACE trial.
Anniekim said earlier that she emailed him and he kindly replied so he's aware.
I posted a comment on Hanlon's latest blog post challenging him to contact Dr Lipkin himself to ask him what he thinks of how Hanlon has covered his work.
I would love for him to have that conversation. He isn't taking patients' views seriously - he doesn't even seem to be reading them but rather projecting into them what he expects to hear - but I think he would listen to Dr Lipkin.
I posted a comment on Hanlon's latest blog post challenging him to contact Dr Lipkin himself to ask him what he thinks of how Hanlon has covered his work.
I would love for him to have that conversation. He isn't taking patients' views seriously - he doesn't even seem to be reading them but rather projecting into them what he expects to hear - but I think he would listen to Dr Lipkin.
if we have polyclonal B cell activation, that means infection, right?
if they are looking into why "some people react differently to common infections" and they are implying that it is a common infection causing the illness, why don't the usual antimicrobials work for everyone?
yesm some people respond to acyclovir, but the majority do not. some respond to antibiotics, but the majority do not.
they MUST look for new pathogens...and this is what is scary to me. i wish i knew how difficult new pathogens were to find and whether finding them depends on already-discovered genetic sequences, primers used, and all that stuff!?...that's what i would like to ask Lipkin.
the O'Keefe sicentist was suggesting that wrong primers were being used when she talked about the possibility of a herpes virus / HERV recombinant virus....would Lipkin's methods find something like that?
if they are looking into why "some people react differently to common infections" and they are implying that it is a common infection causing the illness, why don't the usual antimicrobials work for everyone?
yesm some people respond to acyclovir, but the majority do not. some respond to antibiotics, but the majority do not.
they MUST look for new pathogens...and this is what is scary to me. i wish i knew how difficult new pathogens were to find and whether finding them depends on already-discovered genetic sequences, primers used, and all that stuff!?...that's what i would like to ask Lipkin.
the O'Keefe sicentist was suggesting that wrong primers were being used when she talked about the possibility of a herpes virus / HERV recombinant virus....would Lipkin's methods find something like that?
personally, i would not fill lipkin's inbox with email. we already have a bad rep as patients....he can work on a multitude of things, believe me. there are thousands of potential and real emerging viruses that he gets asked to investigate...i woouldn't want to turn him off!
It feels a bit silly to dwell upon this now, but I really disagree that any of this adds up to any significant burden to the initial Science paper. We don't really understand the mechanism which seem to lead to EBV being associated with MS, there's some reason to think that differences in women's immune responses could explain why they are at risk... we really don't know though. And this is a link which has been studied extensively for decades! We're just too ignorant of many medical matters to even make sensible guesses about plausibility in a wide range of areas.
If XMRV was found in 7% of the population, with an abnormal response from a section of the population leading on to the symptoms of CFS, then it doesn't seem highly implausible that similar mechanisms to those leading to the gender imbalances found in MS could also play a role here. Also, while it does seem likely that there is a significant gender imbalance in CFS, while we have such a poor understanding of the condition, I'm not confident that any of our data is entirely reliable: saying who has 'CFS' and who does not is difficult, and there is room for cultural views about sex differences from both patients and researchers to affect results - what if the 'true' gender imbalance was 55:45? Could differences in the sexes immune systems plausibly explain such an imbalance? I see no way of sensibly making such a prediction, particularly for a retro-virus we had so little understanding of.
There are things that should have raised our suspicions early on (them upping the positive figure to 95%), but we're far from having sufficient understanding of CFS, the human body, or viruses to have been able to say from the start that the results published in Science were implausible enough to be concerned about. If a new study came out with similar result for a different virus, but the samples had been blinded, treated identically from patients and controls and tested independently in two labs, then I still wouldn't see the fact that women seem to be more likely to be diagnosed with CFS than men as any great challenge to these results.
If XMRV was found in 7% of the population, with an abnormal response from a section of the population leading on to the symptoms of CFS, then it doesn't seem highly implausible that similar mechanisms to those leading to the gender imbalances found in MS could also play a role here. Also, while it does seem likely that there is a significant gender imbalance in CFS, while we have such a poor understanding of the condition, I'm not confident that any of our data is entirely reliable: saying who has 'CFS' and who does not is difficult, and there is room for cultural views about sex differences from both patients and researchers to affect results - what if the 'true' gender imbalance was 55:45? Could differences in the sexes immune systems plausibly explain such an imbalance? I see no way of sensibly making such a prediction, particularly for a retro-virus we had so little understanding of.
There are things that should have raised our suspicions early on (them upping the positive figure to 95%), but we're far from having sufficient understanding of CFS, the human body, or viruses to have been able to say from the start that the results published in Science were implausible enough to be concerned about. If a new study came out with similar result for a different virus, but the samples had been blinded, treated identically from patients and controls and tested independently in two labs, then I still wouldn't see the fact that women seem to be more likely to be diagnosed with CFS than men as any great challenge to these results.
i think its showing we have an auto immune disease with viral onset and ongoing viral reactivation individual to one another. Every one has an ebv infection and its controlled by their immune system, but only cfs/me have a low nk function and an ebv infection, mmm sounds like it could reactivated when in that siuation, this further compromises things and then other infections start reactivating. I cant figure how autoimmunity really fits in, i would say we have an nk function problems as well as certain t cell function like cd8 cells.
We need to improve our nk function and our cd t cell function while adding antivirals and abx to treatthe ongoing infections. Smash it with everything. not bits and peices of it but the whole dam treatment.
cheers!!!
We need to improve our nk function and our cd t cell function while adding antivirals and abx to treatthe ongoing infections. Smash it with everything. not bits and peices of it but the whole dam treatment.
cheers!!!
I think many cfs gurus think of dr lerner as an old faddy duddy, but he knows his shit which i think is the biggest percentage anyone else has in it. Then i would put klimas up there with her experience on nk and t cells. Im sure if we could mash their brains together we would come up with a super cfs guru.
Lets all pray to super cfs guru, please tell us how to end all this crap???
cheers!!!
Lets all pray to super cfs guru, please tell us how to end all this crap???
cheers!!!
I hope Lipkin dont get flooded with peoples emails, let Lipkin stick to putting his time and energy (focus) into good science... its where we all need it the most. Let others advocate and spend what is and will be countless time on politics.
I did hesitate contacting Lipkin and tried to keep it very brief as don't want him swamped. Realised after saying perhaps we should all e mail him so he is aware of the article that this was probably not a good idea as the poor man has important work to do. Thankfully he did reply so hopefully he hasn't been swamped.
