Hi Justin.
I see what you were saying in your e-mails, but I think I disagree with you somewhat, and think that the way you phrased yourself made you sound more unreasonable than you are. I'm going to point out some of the problems I see with your e-mails.
eg:
I thought you were aware that it is completely accepted by science that ME is strongly associated with a number of opportunistic viruses such as all or almost all herpes viruses, mycoplasma fermentans, echovirus, enteroviruses, parvovirus and virally-associated blood and lymph cancers.
It's really unclear what you mean here. There is very strong evidence that suffering from certain acute viral infection dramatically increases the likelihood of developing CFS in the following year... but it's far from clear that is what you were saying. It sounds more like you're saying that it's completely accepted that there is a strong association with certain ongoing infections and CFS, which is a more questionable point (depending upon what is meant by 'strongly associated', the criteria for CFS used, etc, etc. This isn't something I know much about, but there seems to have been conflicting studies in this area... although that's certainly not to say that on-going infection is not a key problem. The recent discussions on the difficulties of understanding the association between EBV and MS sound very similar to those that surround CFS).
I don't know anything about associations with different cancers and CFS, but I tend to read psychological studies rather than things in this area.
However, your assumptions and conclusions about the "pro-HGRV" scientists seem to me to be biased once again as compare to your conclusions about the "anti-HGRV" scientists and your silence on the outright fraudulent 'scientists' involved in XMRV and in ME science in general- eg CDC, Wessely school including McClure.
I think that this is a really bad sentence.
You don't provide any supporting evidence for the suggestion of bias. At this point, believing that Mikovits is wrong is not evidence of bias.
You jump in with accusations of fraud (a big thing) without any supporting evidence.
You assume that they would know what the 'Wessely school' is (unlikely) and then confuse matters further by saying McClure is included, when she has only been involved in CFS and XMRV.
I would feel dismissive of an e-mail that made these claims without supporting evidence... and I start with a pretty deep hatred of Wessely.
There is some circumstantial evidence of potential 'sketchiness' re Mikovits and you have no problem assuming the worst (which is a normal human reaction), but why the double standard when it comes to the "other side" - the proven frauds who wage war on ME science? I have asked this numerous times and don't get an answer.
You'd not provided any evidence of 'sketchiness' from the other side.
If you are going to make a claim that people are 'proven frauds', you need to provide the proof. And I think that jumping in with the claim of being a 'proven fraud' is a bad idea. Better to lay out the areas of CFS research which you think are problematic, and leave it to your reader to decide if that is 'fraud' or not. In Science, 'fraud' can take on a different cultural meaning than it would in other contexts.
If you went through examining all of the manipulation of data which led to Esther Crawley's recent claim that PACE showed a 30-40% recovery rate for CBT/GET, then I think that almost all researchers would be deeply concerned about it... but I'm not sure they'd consider it fraud, even with her own financial interests involved. There'd be a strong desire to view it as a series of mistakes or miscalculations... scientists like being able to assume that they are all trustworthy.
re "wage war on ME science" - I don't know what you meant here, but it again sounds really over the top without supporting evidence.
I appreciate that you published David Tuller's piece on CDC, but that's all you've done. In this podcast you mentioned that he wrote the piece but you didn't mention that it's another documentation of the fake science done on ME by CDC. I can't think of another way to explain it but bias.
There isn't much bad virological CFS research, and as they said, they're a virology podcast. I'd really like it if they did take the time to carefully examine some non-virological claims that concerned patients... but I don't think them sticking to virology is reason to accuse them of bias.
Esther, I should have phrased my talk of CDC, McClure and Wessely more precisely when I said they were frauds involved in XMRV/ME science. I meant XMRV and/or ME science, but it seems like i was talking only about ME's possible association with XMRV. McClure definitely way overstepped the evidence and acted improperly and was unchallenged, except by patients and WPI. I don't think there is evidence of fraud; i shouldn't have said that.
Given the claims that Mikovits has made in the media, focusing on McClure for criticism is a bit unreasonable. Her minor missteps are not going to be of any real interest to most virologists, and I share their disinterest.
CDC may have committed fraud in it's XMRV study and it's promotion of it by using the Reeves definition (use of which itself is arguably fraud) and then saying it used the Fukuda definition. Maybe not. I'll have to consider that more.
There's no way most people would consider that fraud, and I wouldn't either. There are difficulties around the different criteria for CFS, but I don't see this example as anything close to being fraudulent.
CDC and Wessely have clearly committed fraud re ME research. But, yes the very clear fraud is in other, non-XMRV research and I should have made that clear.
Other than the misappropriation of CDC funding, I'm not sure there's much that could be considered 'clear fraud'. I think that you need to get your evidence gathered together, to the point that you can make a really compelling case. There's certainly a lot of bad and misleading CFS papers, which are then often spun further by the researchers involved... but it's normally tediously complicated, rather than 'clear fraud'.
In an e-mail to someone you do not know personally, there is less room to rely on conversation. On a forum, uncited claims can be casually made on the assumption that others will ask for a reference/link if they are interested... one is less able to rely upon that sort of back-and-forth when sending an e-mail to a pod-cast.
I guess I'd say that given the content of the show (including some gossipy comments about Mikovits and ME patients) that they should at least mention the 'other side' and also that CDC and Wessely have been accused of fraud re ME by many and some fraud has been proven on the part of CDC (I am referring to lying to Congress in testimony year after year).
I would also ask them as a huge favor for patients and science that they look further into the Wessely, NIH and CDC problems. But that is asking them to go beyond the call of duty since that is not strictly their field.
Yeah.... your e-mails didn't sound like they were asking for huge favours though. I don't think that you''l be able to bring this one back. I'd put this in the 'lessons learnt' pile, and try to remember to be more careful about how you communicate with others in the future, rather than try to continue a correspondence with Virology. I also think that you need to start examining the evidence used to support some of your claims, as I don't think all of them are true.
The quackery that does surround CFS is pretty deeply infuriating, but if you get caught up in that anger, it will make it much harder for you to communicate with those who do not share it. It can also lead you astray, and in to holding beliefs which are not supported by the evidence. I also think that the hunger to escape this past quackey has led a lot of patients to feel more committed to an association with XMRV/HGRVs than would otherwise be the case.
ps: I'm sure that I've made similar mistakes to the ones I'm now criticising you for, and will likely go on to do so again, so I hope that you don't take any of this personally. You seemed open to some criticism, and that alone is an impressive thing - a lot of people aren't. CFS is a really confusing diagnosis to be stuck with, emotionally and intellectually, and we all struggle with that.
I find your posts refreshing and unbiased and that's what we need more of for an even discourse.
Thanks. We could do with some people who are well read of Wessely et al., yet are still willing to defend them. They seem to be in strangely short supply.
