Comments on Lombardi, et al in Science

[CBS]

The Psych Lobby

Those who have built their careers on the marginalization of CFS patients (divide from mainstream, stigmatize then claim you and only you have the answers) are not giving up without a fight.

Sudlow et al. starts out feigning concern about the generalize ability of the science paper ("your CFS patients may have XMRV but leave ours alone") and then they go into allegations of expectation bias and imply poor methodology/handling, etc. Interestingly, they reverse the order of these in their conclusion ("bias, confounding, reverse causality, and lack of generalizability in their study").

Lloyd, White, Wessely et al. The first sentence of the last paragraph says it all.

CFS is likely to arise from complex genes-x-environment risk factors, making a simple causative link between XMRV and CFS unlikely.

They are criticizing the WPI, Clevelend Clinic, NCI study (don't let them isolate the WPI from the Cleveland Clinic and the NCI - the WPI alone is much easier to dismiss) and they make a statement like this? Where does this come from?

I also found it ironic that they pointed out that they adhere to criteria that in their minds precludes any physical findings. Nice to see this is print. I expect that these words will haunt them some day.

The 101 patients studied in were "patients fulfilling the 1994 CDC Fukuda criteria for chronic fatigue syndrome and the 2003 Canadian Consensus Criteria for chronic fatigue syndrome/myalgic encephalitis (CFS/ME) and presenting with severe disability," but the latter requires physical signs precluded in the former.

Lastly, van der Meer et al. concede that the Science article finds something of significance in a CFS subset (patients in outbreaks) but hangs on to the majority of CFS patients as being their turf.

Therefore, we cannot but conclude that although the study of Lombardi et al. unravels the cause of an outbreak of viral infection, the etiology of sporadic CFS that represents the vast majority of patients remains uncertain.

My take on all of the responses is that Dr. "Lenny" Jason is spot on (a majority of the CDC's patients don't have CFS). All that I hear are claims that the chronically tired are theirs and theirs alone.

As for CFS patients, if this is the best they can do, the psych lobby needs to get out of the way. For all of their bluster, these responses were incredibly weak.

The first stages of the Psych Lobby clutching tightly to some remnant of their former domain.

 

[Esther12]

after Wanda Jones' comment at the CFSAC meeting last week that it's XMRV for now but it won't be for long,

I hadn't thought that she'd probably have inside information on the CDC's XMRV work. Drat.

re this back and forth - I thought the complaints against the WPI's work seemed strangely weak. I'm not surprised Science was in no rush to publish them. The WPI's response seemed good too - good idea to try to draw a distinction between their published papers and their more informal unpublished comments (although I still wish they were more cautious with these comments). Unless we get more studies from independant groups backing up the WPI's work though, it won't matter how solid the initial paper was.

Also - how nuts for Wessely to be pushing for ever looser definitions of CFS, while simultaneously arguing that this dustbin diagnosis approach will make identifying and understanding the cause of CFS impossible. It always amuses me when they assume that their view of CFS is necessarily complex and sophisticated compared to those simplistic virologists.

 

[VillageLife]

dr Mikovits has said, to criticize this paper is criticizing Dr Ruscetti & Dr Silverman who are highly skilled & respected.

 

[natasa778]

ah, so this is the 'paper' of his that van der meer hinted will be 'published' in science in his recent interview (if the translation was correct).

what a clown.

it is tragic to see wpi wasting valuable time having to reply to these scheming snakes.

ps whatever does a neuroscientist with no prior interest, or knowledge of, cfs or virology think she is doing commenting on this paper. this lady stinks to heaven!

 

[Gerwyn]

Those who have built their careers on the marginalization of CFS patients (divide from mainstream, stigmatize then claim you and only you have the answers) are not giving up without a fight.

Sudlow et al. starts out feigning concern about the generalize ability of the science paper ("your CFS patients may have XMRV but leave ours alone") and then they go into allegations of expectation bias and imply poor methodology/handling, etc. Interestingly, they reverse the order of these in their conclusion ("bias, confounding, reverse causality, and lack of generalizability in their study").

Lloyd, White, Wessely et al. are haning together on this.The first sentence of the last paragraph says it all.



They are criticizing the WPI, Clevelend Clinic, NCI study (don't let them isolate the WPI from the Cleveland Clinic and the NCI - the WPI alone is much easier to dismiss) and they make a statement like this? Where does this come from?

I also found it ironic that they pointed out that they adhere to criteria that in their minds precludes any physical findings. Nice to se this is print. I expect that these words will haunt them some day.

Lastly, van der Meer et al. concede that the Science article finds something of significance in a CFS subset (patients in outbreaks) but hangs on to the majority of CFS patients as being their turf.

My take on all of the responses is that Dr. "Lenny" Jason is spot on (a majority of the CDC's patients don;t have CFS). All that I hear is that these fools continue to claim that the chronically tired are theirs and theirs alone.

As for CFS patients, if this is the best they can do, the psych lobby needs to get the hell out of the way. For all of their bluster, these responses were incredibly weak.

These responses are the first stages of the Psych Lobby clutching tightly to some remnant of their former domain.

Two things of particular note.

The now admit that the ccd represent an entirely different cohort than their fatigue based criterea. Secondly signs in their language means objective and subjective parameters and literally means no signs of anykind of neuroimmuneendocrine disease as an even remote possibility

Finally their comment about the disease being caused by gene environment interactions is priceless.The biggest genomic regulator of such interactions are actually endogenous retroviruses.Are they saying that XMRV cant do this when everyother known retrovirus does

 

[xanadu]

Can someone with a scientific background who understands the publishing of articles and comments please tell us whether this type of attack on a published paper is usual? Is this done with other papers or are these attackers doing something unusual by attacking the WPI paper this way?

Wildaisy, it happens all the time in medical journals, not unusual at all. Maybe it's not so common in this journal. It is unusual though for critics to demonstrate their misunderstanding so comprehensively.

 

[oerganix]

Amazingly lame 'technical comments' submitted to the prestigious Science magazine, and referring to self-published two week wonder studies with 'chronic fatigue' psychiatric cohorts as superior? The definition of chutzpah should have links to those 'comments!'

As far as those BMJ, Dutch studies that are used to deflate the "WPI" study (no mentioning of CC/NCI of course!), our own Parvofighter is world famous on her 'technical comment!'

Yes, amazingly lame! For the most part, they didn't even have their facts right, yet they had the nerve to put their comments in print. That they would criticize the Science paper for something that wasn't even in it, is just amazing! So completely refuted in a short paragraph. Did they really think they would have the last word?

That they would say there were statements in the paper that weren't there is equally amazing. Did they think no would notice? Or just take their word for it?

I guess it's worked before, so they're desperate to try it again. I guess it's not so obvious to anyone who isn't familiar with the history of the psyche lobby.

 

[Dolphin]

Don't forget one can send in e-letters

Don't forget that one can send in e-letters in reply to each letter published (one can't with lots of journals but one can here). The psychiatrists, etc., I imagine won't like to be criticised in academic circles which should be possible.

Ideally, make it look like a journal letter so if one can put [1] after the first reference, [2] after the second reference, it'd be ood. One and certainly two references makes a little letter look very scientific. There are "easy" ones to use e.g. the letter you are replying to will give you one; if you quote the Lombardi study, it'd be a second. Or if you quote the Fukuda criteria or any other criteria, they can be references and you're probably free then to stop having to give references. These are e-letters so don't have to be tight like letters for publication. Websites can also be given as references esp. if you're struggling to get a reference or two.

 

[Rivotril]

I havent had the time and energy to read all this stuff, and it's nice to see the WPI reaction, but some of this reactions (which are from, as I see, the last quarter of 2009) for me are just looking dated.
For instance: Van der Meer/Kuppeveld claim in their reaction that the 101 Science patients were not a good cohort and are not representive for most of ME/CFS patients, but just for a subset (incline village).

But now, we already know that WPI also tested some of The Kuppeveld samples XMRV-positive.
After that, Van der Meer told in the Dutch newspapers that there must have been contamination in the WPI lab.
So the first discussion (cohort) is not really the issue anymore for Van der Meer, because he has lost that point already (even with his 20 year old oxford samples).
And, when it's proven that there is no contamination (by an independent study later) he will switch to the discussion that XMRV is just a passenger like an opportunistic infection and not a pathogene.

And, for the independent people, ordinary people that know nothing about ME/CFS, there's so much information and discussion that nobody really understands what's going on anymore.
what is exactly what Van der Meer and sidekicks want to achieve, I think.
I'm really getting enough of people like him just slowing down the process of science in case with invalid and unjust arguments.. but I'm getting repetitive in this I realize

 

[Mithriel]

As I read this thread my heart sank. I could not believe that Science was giving this junk house room. I wondered how they had been got at. Then I got to the reply from the WPI :Retro smile:

Van der Meer may think he has been "published in Science" but this is obviously a case of giving them enough rope to hang themselves. Remember McClure wondered why Science had accepted such a bad study so the journal was under attack as well.

Their criticisms were rubbish and now they are proven to be so in print.

And the little snippets... Fukuda precludes the signs in the CCC and then

CFS is likely to arise from complex genes-x-environment risk factors

So it isn't just deconditioning then ?

Petty little minds who exploit our suffering to further their own careers.

Mithriel

 

[Michelle]

Right. So lemme get this straight: Cathy Sudlow is educating Frank Ruscetti about expectation bias?

 

[Gerwyn]

Right. So lemme get this straight: Cathy Sudlow is educating Frank Ruscetti about expectation bias?

To put it politely Cathy Sudlow is a prisonr of her preconceptions and her distored views of her own abilities.She is actually an embodiment of expectation bias because of her obvious belief that her subjective views are objectively true.

 

[V99]

Well they didn't say anything new or unexpected for them, but is that all they have. So again it all comes down to a proper replication study. Wow who knew. Darn it, they must be thinking, if only we had a couple more brain cells to work that out.

Others here have made great observations about these comments. My small contribution is, since when has it been ok to not undertake research, so that it wont effect patients emotions. What horse doo. Also why should previous research into other causes, effect this research. If you look in the wrong place before, how do you know if the next place is wrong or right without looking first?

 

[V99]

It is therefore impossible to critically evaluate the findings.

Yes, virology/ retrovirology is not there area of expertise.

 

[oerganix]

Well they didn't say anything new or unexpected for them, but is that all they have. So again it all comes down to a proper replication study. Wow who knew. Darn it, they must be thinking, if only we had a couple more brain cells to work that out.

Others here have made great observations about these comments. My small contribution is, since when has it been ok to not undertake research, so that it wont effect patients emotions. What horse doo. Also why should previous research into other causes, effect this research. If you look in the wrong place before, how do you know if the next place is wrong or right without looking first?

Yeah, interesting how one of them had to throw out the history of deFreitas...totally irrelevant. Just made me think he was thinking they could do it again, derail anymore studies showing viral or retroviral involvement.

I can't imagine how they have the nerve to show up at those international conferences that are scheduled later this year.

 

[leaves]

Science 14 May 2010:

CFS is likely to arise from complex genes-x-environment risk factors, making a simple causative link between XMRV and CFS unlikely. 0.[/B]

Heheheh The world is likely to be flat therefore it is unlikely to be round
who can argue with that

 

[cfs since 1998]

Heheheh The world is likely to be flat therefore it is unlikely to be round
who can argue with that

Yeah, I noticed that too. "XMRV is unlikely to cause CFS, because CFS is likely caused by something else." That's some profound logic there.

 

[leaves]

Yeah, I noticed that too. "XMRV is unlikely to cause CFS, because CFS is likely caused by something else." That's some profound logic there.

indeed.

 

[leelaplay]

Quote Originally Posted by shrewsbury View Post
Science 14 May 2010:

CFS is likely to arise from complex genes-x-environment risk factors, making a simple causative link between XMRV and CFS unlikely. 0.[/B]

Heheheh The world is likely to be flat therefore it is unlikely to be round
who can argue with that

To be clear, just in case those of you who don't know me might possibly think otherwise, - I did not say this - it is in the copy of the comment that I posted

Science 14 May 2010:
Vol. 328. no. 5980, p. 825
DOI: 10.1126/science.1183706

Comment on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome"
Andrew Lloyd,1 Peter White,2 Simon Wessely,3 Michael Sharpe,4 Dedra Buchwald5

 

[leaves]

To be clear, just in case those of you who don't know me might possibly think otherwise, - I did not say this - it is in the copy of the comment that I posted

Science 14 May 2010:
Vol. 328. no. 5980, p. 825
DOI: 10.1126/science.1183706

Comment on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome"
Andrew Lloyd,1 Peter White,2 Simon Wessely,3 Michael Sharpe,4 Dedra Buchwald5

Yes we are very clear about that!! Sorry that I cut the quote so sloppy!