Concerned about TWiV/Virology.ws & Alan Dove - so I sent an email....

[Ash]

Firstly, yes I'm cross posting this on both PR & mecfsforums, I don't see why I should favour either community's population over the other. If moderators feel it is in the wrong section please feel free to move the thread or indeed merge it with an appropriate existing thread, I've burnt off my day's brainpower writing the email so I may well have posted in the wrong place, please bear with me. :Retro smile:

I've read some concern about TWiV/Virology.ws & Alan Dove's potential negative influence on maybe making CFS as a taboo topic due to too much (perceived) hostility from patients. I may be well behind the times on the status of this but as I quite enjoy Vincent Racaniello's blog & podcasts & as the Alter/Lo paper hasn't been discussed on there post publication I was a little concerned & wrote the following email. I hope it is a good one as I've already sent it to virology@virology.ws

Title: Wondering if there will be a follow up on the MLV related viruses in CFS on TWiV/Virology blog?

Greetings,

I'm sure you are aware of the Alter/Lo paper published in PNAS recently but I'll post the link to the abstract which has links to the full paper & the discussion article anyway....

http://www.pnas.org/content/early/2010/08/16/1006901107

I'm writing this email to express some concerns I have noticed coming from within the CFS patient community regarding whether any follow up will occur, or whether the patient community is now viewed as too hostile & just down right crazy & may have made CFS & these new retroviruses a no go zone for TWiV & the Virology blog.

Recently, there was some nasty interactions with Alan Dove's blog where some found one of his posts on XMRV & CFS patients offensive or at the least a little condescending, a link to the post in question...

http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/

There is some concern that the Virology Blog & TWiV might have been turned off from covering this topic due to some hostile emails received from patients from directly after the podcast itself & then even more stemming from Alan's blog post.

I understand that of course virologists & science media commentators know very little about the history of Chronic Fatigue Syndrome, why would you without a personal interest? The virus(es) are what you are in this for & plenty of us do understand that. I'm not intending to give you a long winded history lesson on CFS (if you really want the back story I can suggest Hillary Johnson's book Osler's Web)

All I am asking is please bear in mind that CFS patients have been sick, some very much so & some for decades, yet simultaneously we have been marginalised by the medical profession & society at large for being malingerers or simply imagining it. Due to this, some patients do become somewhat irrational at times & do lash out a lot, especially when mental illness factors are mentioned. Cognitive function impairments that can lead to comprehension & interpretation problems play some part, as do secondary mental illness factors to a degree (as they would in any chronically ill patient population). I ask you, please don't judge our whole population by the hasty actions of a few!


I personally think that the developments in this field would be too interesting for a virology blog not to cover it, but given all the politics that has surrounded this condition for so long one can't help but be a little paranoid. I urge you to keep covering this. I don't expect you to become CFS advocates, just continue to help those interested to interpret & understand the science as it unfolds, as you have been.

Kind regards,

Ash (Full name sent in email, removed here)
CFS Patient for 6 1/2 years.
Queensland, Australia

So, thoughts...

PS: I used CFS terminology as they that is what the Alter/Lo study used via the Holmes & Fuduka definitions. I personally prefer ME/CFS or just ME but in this context I think using CFS is appropriate.

 

[urbantravels]

I've been eagerly awaiting TWiV coverage of the Alter/Lo paper and have been disappointed not to see it yet.

However, I pretty much assumed Prof. R & friends were just taking the week off.

I don't see a scenario in which TWiV doesn't cover the Alter/Lo findings as well as the forthcoming discussions at next week's workshop and beyond, just because some patients got in a dust-up with Alan Dove. The XMRV/MLVs story is a big story for virologists. Who was it who said, elsewhere on this forum, that you couldn't keep researchers away from this subject with clubs?

I was disappointed not to see Alan come back and engage in more discussion after he posted here; I thought many of the responders had thoughtful comments to make and I'd really like to hear his responses to them. I still hope that he will come back, or that there will be some other opportunity to engage further.

 

[CBS]

Ash,

Thank you for writing Dr. Racaniello on this topic. The same thoughts have crossed my mind. However, I've assumed that Dr. Racaniello was simply not available to post on TWiV or Virology Blog as he has not posted on any subject since his TWiV post from 8/22. Let's hope that's the case. If not, I would rather he post and block comments if the patient response is just not worth it.

 

[Ash]

I was kind of wondering if rather than saturating the blog & podcast with one topic they might be waiting for the upcoming conference to be held rather than cover it now & then again in a fortnight - I mean c'mon, the 3rd human retrovirus family has to have virologists excited no matter what it does.

I also thought Alan Dove's post over here was much better in tone than the blog post but the not coming back thing made me wonder.

The sense of unease made be want to write something, I figure if they get some nice emails it might counter some overly emotional rants they've been getting - it is always nice to feel appreciated after all.

 

[Megan]

There is some concern that the Virology Blog & TWiV might have been turned off from covering this topic due to some hostile emails received from patients from directly after the podcast itself & then even more stemming from Alan's blog post.

.......All I am asking is please bear in mind that CFS patients have been sick, some very much so & some for decades, yet simultaneously we have been marginalised by the medical profession & society at large for being malingerers or simply imagining it. Due to this, some patients do become somewhat irrational at times & do lash out a lot, especially when mental illness factors are mentioned.

Ash,

I appreciate your post as I think it raises a number of significant issues.

I doubt that TWIV or other virologists will ignore HGRV/XMRV, though I am concerned that research into HGRV may initially focus on other illnesses such as prostate cancer that are initially perceivd to be less controversial and 'more serious'. I think this is really the biggest danger for us. I base this concern on a discussion I had, albeit some time ago, with a scientist at an Australian scientific institution. It was suggested to me that there was an impression that prostate cancer might be 'easier' to look at due to the controversy surrounding the CFS diagnostic criteria. I was pleased to hear that the scientists were aware that this was an issue (McClure didnt seem to know that), but at the same time concerned that this might be a barrier to us, particularly given that most scientists are unaware of the serious of the nature of CFS. A perception of difficult patients would only be another negative add on to this situation. I hope the Alter paper helps us on this front. For the above reason I am glad he called those new strains CFS-1, CFS-2 etc.

Having said that, I think the mustrust between patients and the scientific and medical profession, particularly the psychiatric community is a huge issue for us and one that our advocacy organisations need to be taking up with scientiists and the medical community (perhaps they already are?). Even if XMRV research continues in a positive way this is likely to be a continuing issue for us. If scientists are aware of where we are coming from I doubt they would be quite so offended and may see us as less crazy than frustrated and angry due to our past mistreatment and of course the suffering of the illness itself.

I have spent some time recently reading up on the history of the response to HIV/AIDS in Australia (which was a very different response to the U.S.). If the XMRV theory is confirmed then we have a lot to learn from the AIDS activists. The distrust of the medical community, particularly psychiatrists is one of many factors we have in common, though for very different reasons. We have much to be thankful for to the AIDS activists here as they have already managed to change many things that may make our XMRV path a little easier. There are many other similarities and I would urge people from all countries to learn the history of HIV in their own countries and where things are at now. eg. these patients fought for early access to experimental treatments, and they succeeded. There will be important contacts for us in those communities. Surely other advocate groups for other illnesses may also hold valuable information.

I feel that there is much anger and might I say 'energy' awakened in us due to the XMRV findings. I know personally I have crossed some kind of line because of it. But I sense that much of this 'awakening' has resulted in much milling about and not knowing how or where to channel it. Because we have been ignored for so long we have an understandable urge to want to rush out and 'scare' the whole community about the new retrovirus, then they cant ignore us!!! To me this is more of an emotional reaction than a strategic one, though I see publicity is important if it creates extra pressure for research. I am a little concerned that we may live to regret scare tactics, given the initial stigma that came upon HIV positive people, that was partly based on lack of knowledge on disease transmission. We dont yet know how XMRV is transmitted. I am therfore wondering whether we should be focussing more attention on lobbying the government and scientific communities about this and learing more from other patient advocacy groups that have gone before us.

 

[pictureofhealth]

Hi Ash, thanks for posting this. I had not been overly concerned either as assumed they might be waiting for the Conference for all the details from other scientists and further studies to be announced - plus, as others suggest above, they might simply be on holiday. Hillary Johnson hasn't commented on on the Lo/Alter findings yet either, now that they are known in more detail, (not that I could see from her site anyway), but I'm pretty sure her next post will be worth waiting for!

 

[Wasbeer]

Thanks a lot Ash. You have written exactly how I feel about the matter.

 

[FormalScientist]

Hi,

Prof. Racaniello stated in his last TWiV that they were going to have a break of one or two weeks, so there seems no reason to be concerned. I'm sure they will cover MLVs intensely on upcoming TWiVs.

Regards

 

[Esther12]

Hi,

Prof. Racaniello stated in his last TWiV that they were going to have a break of one or two weeks, so there seems no reason to be concerned. I'm sure they will cover MLVs intensely on upcoming TWiVs.

Regards

Yeah - I see that it would be easy to let XMRV dominate.

I'm a bit disappointed Alan Dove stil hasn't replied to the thread he popped into. Even if he was busy at the moment it would be polite to let us know if/when he was going to write a proper reply to the concerns raised.

 

[Recovery Soon]

Ash,

I think this is well stated and needed. Thanks.

 

[SOC]

Well done, Ash!

 

[urbantravels]

Megan, you make some very good points. I've been too PEM'ed lately to try and formulate something I wanted to say, but I'll try:

There are two stories here. One is just the science. Something new has been discovered which is interesting in and of itself. Early results seem confusing and contradictory, but of course this is absolutely par for the course with any "early science". All the scientists I know are being reassuring - science is self-correcting, this will work itself out, it's quite normal for everything to look like this in a new field.

Then there is the other, longer, messier story about the way this disease has been treated. We should not still be at the "new science" stage with this thing. We should have been here twenty years ago; by now we should have been much further along with treatments, if not a "cure." It absolutely beggars belief that a real, organic disease should have been swept under the rug for twenty years - why? Because it was just too hard to figure out? Because of the politics and egos involved when there failed to be an early breakthrough that researchers could get glory for? Because patients don't die, they just fade away into their darkened bedrooms - or, if not fully disabled, they have had to learn to accept living at a permanently reduced level of function and health?

I do not subscribe to the elaborate conspiracy theories; I think the truth is even more horrible than that - our disease got the shaft because of a combination of scientific arrogance on the one hand and institutional bungling on the other. The CDC and, in the early days, the NIH took care of the institutional bungling, with help from some notable individual prejudices like the florid sexism of Stephen Straus. As for scientific arrogance - by that I mean the abject failure of the research community to continue to pay attention to the clinical manifestations of the disease when the cause wasn't immediately and easily found. Absence of evidence is not evidence of absence.

For those who believe in science, this story really strikes deep at the heart of the belief that science is self-correcting and that the truth will win out in the end. That's how science *should* work - if people didn't get in the way, if scientists themselves were truly always willing to question their assumptions and prejudices.

I *do* believe in science. I am not attracted to woo-woo and handwaving explanations of how this disease comes about. I'm personally devastated by what the disease has done to me - my life is in ruins. Fine. But my brain still, mostly, works - and when I get done sobbing and raging, I'm *intellectually* unsatisfied by the available information about the disease. Something mysterious breaks down and it has to do with stress or modern life and things just kind of go off the rails and can't get back on them, people get fatigued and they can't get un-fatigued, somehow their anxieties get into their bodies and stay there. To me, that sounds like utter BS. Multiple body systems don't just "go wrong" for no reason. Sure, stress has a bad effect on your body and probably plays some role. But it's nonsense to say that there's something unique about the level of stress we experience now. Any student of history knows that every age has thought that *their* age is uniquely stressful and that things used to be simpler back then.

My question to Alan was a sincere one - how do you *disprove* the hypothesis that a disease has a psychosomatic cause? What precedent would there be for so many people getting so sick and having it be "psychosomatic"? How do you cure a "psychosomatic" disease? What's the available evidence showing that psychiatric treatment has worked? Does the preponderance of evidence show that treatments based on this hypothesis have been successful?

I do think the avalanche has been triggered and that the research is finally moving forward in a productive way. I'm not concerned that new findings will be "suppressed" at this point. But I do think that the story of how badly - and ultimately, unscientifically - this disease has been treated for the last two decades is so horrific that a lot of people who deeply believe in science simply won't want to believe it. It's a betrayal of science that ought to make scientists just as angry, if not angrier, than patients.

 

[Sean]

Well said, urbantravels. Pretty well sums up my position. I only wish those so enamoured with psychosomatic explanations would be as critical of them as they are of biological explanations. It really seems that otherwise rational and decent people have simply fallen for this latest fad, and have great trouble admitting it. I understand why, but it is not acceptable.

But I do think that the story of how badly - and ultimately, unscientifically - this disease has been treated for the last two decades is so horrific that a lot of people who deeply believe in science simply won't want to believe it.

That is the nub of it. It fundamentally challenges their belief in the integrity of both the scientific process, and the ethics of broader society. And neither come out looking good in the ME/CFS saga.

 

[garcia]

Brilliant post urbantravels!

 

[Mark]

Some great posts on this thread, and a great letter from Ash to kick if off. Would like to take the opportunity to take this point of urbantravel's just a little further though...

I do not subscribe to the elaborate conspiracy theories; I think the truth is even more horrible than that - our disease got the shaft because of a combination of scientific arrogance on the one hand and institutional bungling on the other. The CDC and, in the early days, the NIH took care of the institutional bungling, with help from some notable individual prejudices like the florid sexism of Stephen Straus. As for scientific arrogance - by that I mean the abject failure of the research community to continue to pay attention to the clinical manifestations of the disease when the cause wasn't immediately and easily found. Absence of evidence is not evidence of absence.

I've spent much of my weekend following up on this issue of how and why the Alter study was blanked out of the UK media. It's been a real journey of discovery and taken us into some fascinating directions. Along the way I think I've clarified for myself what I would see as the ultimate 'big issue' underlying all of this.

Back in late 2009, I found myself wrestling with conspiracy theory, reading with incredulity about the history of ME/CFS, Osler's Web, Incline Valley etc. I've long been fascinated by conspiracy theory anyway, and I'd already developed an understanding that what we call 'conspiracy' is simply a view from outside an inner circle from people with incomplete information; something definitive about a society divided between 'knows' and 'know nots'. When you don't know what's going on, you fill in the gaps and start guessing about what's inside people's heads (just like the psychs, in fact). When you are closer to the centre of the action, all you see are a bunch of people with diverse views networking and chatting with each other and making decisions. From the outside, you call it a conspiracy; from the inside, that description seems ludicrous.

Urbantravels description is, therefore, likely far more accurate than the pure naive "conspiracy theory" explanation. There are themes like human weakness and error, prejudice, attitudes like sexism (a massive, massive part of this in all probability) - the underlying philosophies.

Well in our investigation of why the UK press had nothing to say, we've uncovered something extraordinary which looks like a genuine, bona fide, referenced and confirmed conspiracy at the highest levels of the UK establishment: a conscious infiltrationist strategy from a former extreme left wing group into the media and scientific establishment on the basis of their transformed post-marxist philosophy. In response to the growing environmentalist movement which was undermining their base for 'class war', they behaved in a reactionary fashion and came to define themselves as "anti-green" and declared war on the environmental movement. They used entryist strategy to position themselves, and they found natural allies on the extreme right and libertarian wings as well - people who were also concerned to defend Science at all costs against the threat of the environmental movement, which they saw as threatening human progress.

On further exploration of these connections, we came to realise that the effort to expose the network was a huge task and probably a misleading one, since these hidden or partly-hidden networks of influence are fluid and are evolving and interacting all the time. What seemed far more important to me was the underlying principles involved, and the clear and stark statements of the extremist philosophy of the Living Marxism/LM/IoI group brought the whole thing into stark relief for me.

My conclusions about the philosophical issues at the root of our current predicament are in post #65 on the following thread, and the exposition of the philosophy of the "failed revolutionaries" of Living Marxism is set out in post #40:

http://www.forums.aboutmecfs.org/sh...ce-Media-Centre-RCP-and-press-silence-on-XMRV

I feel comfortable now that I understand what the big underlying issue is, and what sort of things we need to demand of our scientific and democratic structures in order for humanity to learn to prevent similar mistakes in the future. I may be wrong, or barking up the wrong tree - it wouldn't be the first time! - but this feels to me like a resolution of something I've wrestled with for some time, and ends with a clear principle that we all need to start from when moving forward. So I hope this is interesting to people on this thread and elsewhere - if you think what we've found is important, then please pass it on...I'm going to be asleep for quite some time now, I suspect... :Retro smile:

 

[urbantravels]

urbantravels' razor: never attribute to conspiracy that which can adequately be explained by institutional dysfunction and the failure of individuals to think beyond their biases.

 

[VillageLife]

Conspiracy or not....who knows?
but our country (UK) has let us all down....the worlds let us down.
Family, friends, strangers, all as bad as each other, they don't care about this illness, they don't get it and basically we are made to feel bad about being ill.

We are heading to the XMRV RETROVIRUS conference this week known as a group of mentally ill people. This has got to be one of the biggest *mess ups!* made by the medical profession ever!

 

[Mark]

urbantravels' razor: never attribute to conspiracy that which can adequately be explained by institutional dysfunction and the failure of individuals to think beyond their biases.

A very good razor that. I completely agree, and I hope what I've set out shows that you can look behind the institutional dysfunction and biases to understand the philosophical errors that underpin those very failings. Hope that makes sense.

But to reiterate also: when you have a well-documented example of a group of extremist radicals going underground after very publicly espousing an infiltrationist strategy and a very specific goal, and when those same people then pop up a decade later in positions of power and are very effectively achieving precisely that agenda - because that's exactly what we have here in the UK at least, as the thread I cited shows - then that fits all the definition of a conspiracy as far as I'm concerned. It's subtle, fluid, there are extended networks, and in that they are no different to this forum or any other group or network - so what's important to focus on IMO is the doctrines that lie behind those behaviours.

 

[Ash]

I got a brief reply from Vincent Racaniello today confirming he was on holiday with his family the last two & a bit weeks & that no disagreement or controversy would prevent him from covering this topic.


I like your razor urbantravels :Sign Good Job: