Lipkin bad news folks

[Sasha]

Every response is enjoyed by the writer because he knows that there will be no repercussions

Although he has a ton of people easily contradicting him on his blog now so I'd say this has had repercussions on his reputation.

 

[biophile]

Comments are up now on Hanlon and he's getting a slamming - I'm glad they at least got through moderation. The man's a joke. Looking for mine now...

He has now responded with another blog:

M.E - no one is saying this is not a real illness

http://hanlonblog.dailymail.co.uk/2012/09/me-no-one-is-saying-this-is-not-a-real-illness.html

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.

 

[currer]

Anniekim - its definitely in the first half of the recording cause I only watched that far and heard that bit.
I think it was about half way through the first half?

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.

 

[Sasha]

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.

Thanks - I've posted another comment and there are another couple up. He's getting a kicking again. It's as though he hasn't understood anyone's comments. Bizarre.

 

[Sasha]

Thanks for doing that.

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.

 

[Daffodil]

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?

 

[Daffodil]

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!

 

[Esther12]

While gender differentials in other diseases are recognised, none have been ascribed to preferential infection – that is: across broad populations pathogens are as able to exploit male bodies as they are female ones, always allowing that differences in societal roles allow for great exposure of one gender above the other. EBV is associated with MS, a condition which shows a significant gender differential – but EBV is present throughout the human population, virtually everyone gets infected at some point, from which we have to conclude that MS is a condition of response not of exposure (note the point re: response made by Lipkin). If M.E/CFS were an illness of single pathogen causation then to explain the characteristic gender differential, such a pathogen would need to be near ubiquitous across the human population –or a process of preferential infection would be required, something which tests plausibility because no such process is yet known. The key point here is not that question of plausibility defeats the results, but that it should raise caution on the part of any researcher. Exceptional results require exceptional explanations.

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.

 

[heapsreal]

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!!!

 

[Enid]

Yes I agree heaps - the immune system fails (for whatever reason) - may or may not lead to an an autoimmune condition but I certainly found presentation of latent viruses long held in check.

 

[Sasha]

personally, i would not full 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!

I agree - let's not bury him under emails when he could be working on his research.

 

[heapsreal]

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!!!

 

[SOC]

I've noticed that some of the misleading headlines have been changed, eg:

"'No connection' between ME and two specific viruses"
http://www.belfasttelegraph.co.uk/n...-fatigue-syndrome-16212209.html#ixzz26tLq2DIs

Betcha Lipkin (or someone associated with the study) got on their case. We have a long history of patients complaining about garbage like those headlines to no avail. Have we finally got some powerful people/organizations on our side?

 

[Enid]

The psyche lobby has been challenged for years and all those involved will continue to do so. Lipkin good news - your ordinary UK GP miseducated here by this insidious creep we will re-educate too.

 

[taniaaust1]

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.

 

[biophile]

I just posted this comment on Hanlon's 2nd blog, pending approval:

We get it, you accept that ME/CFS is a real illness. However, it seems that you have not really understood the comments on your previous blog. Above you wrote that "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". To me the gist of the comments seems to be criticizing your blog for sloppy journalism and pointing out the numerous errors within it.

Starting out with "probably a mental illness after all" (just because two retroviruses were ruled out) and "tin hats on" was a poor beginning to an article. So was equating the passion surrounding the issue with "hysteria". A common theme in the comments is that you have conflated the debunking of XMRV/pMLV retroviruses with the debunking of viruses in general and inappropriately defaulting to a psychiatric explanation/classification. Without clarification that this study was on two retroviruses only, such a statement is poorly worded and will look even worse if Lipkin's pending pathogen study finds something significant.

Controversial issues are controversial for a reason. You appear to believe the fad explanation that people only criticize the "psychiatric cause" because they fear the stigma surrounding mental illness as not real. Numerous comments have pointed out otherwise. Do you, ironically, automatically assign "some sort of sinister motivation" to those who criticize the "psychiatric cause", misrepresenting healthy skepticism and conflating critique with harassment?

Accusations of criminal harassment seem to be based mostly around the anecdotes of one or two scientists, it does not seem to be a widespread problem. I do not condone it and am not necessarily doubting the accusations (although I would like to see more evidence over rumour), and you do suggest towards the end that it is probably from a small handful of people, but it would be important to clarify this earlier in the blog so not to give the impression it is common. Over time I have not been able to find any patients/advocates who condone such behaviour, even among those who are highly critical of the "psychiatric cause". The ME/CFS community seems to have overwhelmingly accepted the results of the study in question. Where are all the so-called "ME terrorists" harassing Lipkin now?

You appear to have watered-down Shepherd's stance on ME/CFS; I'm fairly certain that he stands much closer to the biomedical position than merely supporting "the view that ME may not be a purely psychiatric condition".

You have vastly overestimated the success of the PACE Trial, which did not find CBT and GET to be "highly effective" as you claim (even according to the authors of that study), nor "suggesting of course that this was primarily a mental problem not a physical disease". The main results in self-reported fatigue and physical function, in this non-blinded study without placebo control, simply do not justify such statements and were not backed up by objective improvements.

The authors shifted the goalposts (weakened them) halfway through the trial so it was much easier to achieve a "clinical response", and even then the PACE authors themselves concluded that "Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed. The effectiveness of behavioural treatments does not imply that the condition is psychological in nature." Were you aware that 6 minute walking test distances at the end of the trial remained as poor as what is observed in serious medical conditions? And that a 2nd paper was published which demonstrated no effect for employment status or welfare/insurance payments? Does it not seem unusual that a "highly effective" treatment leaves patients seriously disabled?

You stated in your original blog that "Something about this disease seems to cause a suspension of reason. [...] There is a deep mystery here and one is forced to suspect that there is more to all this than meets the eye." I bet some people will find your words ironic when considering the content of your blog. I do not expect journalists to properly understand the science and/or politics of ME/CFS straight away, but I expect more curiosity for different sides of the argument and the avoidance of inaccurate conflations.

Posted by: biophile | 19 September 2012 at 03:31 PM

 

[anniekim]

personally, i would not full 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!

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.

 

[anniekim]

Hanlon had now posted a third post. On balance he believes the literature supports a psychiatric origin for m.e though he says he may be wrong. Grr...

 

[Esther12]

I just posted this comment on Hanlon's 2nd blog, pending approval:

Better than he deserved B.

 

[CJB]

Does he mention that 2/3-3/4 of the patient group they were studying had poly-clonal B cell activation in the press conference? I've listened to most of it but cant find him saying that. Does he say it near the beginning? Many thanks

This remark was not in reference to the current study, but dates back to his first involvement with ME/CFS in the late 90s. It's at 29:00 minutes approx in the video.