*2 new* letters, Myra McClue, Annette Whittemore

[starryeyes]

lol Julius.. you know I can relate. :innocent1:

Brainfog strikes!

 

[free at last]

Anything that remotely seems like harrasment is not, imho, good for us. Politicians, insurance execs, and Reeves can be sent challenging letters, but we need to have researchers interested in working in the field not avoiding it. You don't get anywhere by giving scientists the feeling that ME folk are like the anti-vax, creationist, 9/11 conspiracy crowd.

To a degree i know your right, but the problem is if we continue to allow certain individuals to get away with this corrupt manipulation, through fear of exclusion, then your playing right into there hands. We are already excluded by those in power, what have we really got to lose that we havent already been losing for the last 20 years. By playing it nice we have got no where,i know this to be true, as most here also know.

No enough is enough. Its time to play them at there own game, We need to show them that were are not taking this crap anymore. And if we discover wrong doings, manipulation, opinions not based on science or fact. then its time we sent a message out. WE WILL EXPOSE YOU. we cant live on fear of exclusion anymore. either play it straight or get out should be our message. only by fighting this corrupt opinionated feild do we stand a chance.otherwise im sorry we have all lost already.Mr hooper knows this, the wpi knows this. I wont live on fear of exclusion anymore. i absolutely wont.You choose your own path. Those reserchers that care wont stop doing research, if they are playing it straight they have nothing
to fear from us anyway. Who needs the other lot.They will eventually get there own way. unless we try to stop them. My message from now on is play it straight or we are going to to pick holes in you for a change, just like they have been doing to us all, for the last 20 years

 

[Cort]

anciendaze said : "

Originally Posted by V99
Well we all know who Wessely will blame - I'm not a virologist.



Now we come to an interesting question, why did he rush into print with commentary on these hurried results, if they are far out of his field?

EDITORIALS:
Myra McClure and Simon Wessely
Chronic fatigue syndrome and human retrovirus XMRV
BMJ 2010;340:c1099, doi: 10.1136/bmj.c1099 (Published 25 February 2010)

She lives and works in a climate that does not take ME/CFS seriously. That may be the source of her arrogance towards WPI..."what idiots they are, to take this silly mental illness so seriously". "I, myself, am working on something important, prostate cancer." "Of course I didn't mind taking a minute or two out of my busy schedule to help Simon put the little pipsqueaks in their places!" "After all, he told me everything I needed to say!" (Self talk I imagine from her, not actual quotes, you literalists.)

Remember, she has SW whispering in her ear, urging her to say those stupid things in the study and the editorials, and doesn't have anyone from the other side telling her competing or balancing information. I can imagine her getting this message from him: Cooperate with me, dear, and you'll go far. Oppose me and you'll go nowhere. (Not in those exact words, of course. With subtlety.)

​

I think this is the core issue. She's not evil -she's just a researcher working in a particular environment who believe's that her study was accurate.If XMRV really is found in only one of a million cells and is not active to boot in them then it would seem to me that its very possible that any change in a technique from one lab to the other could have tremendous consequences. However, if she still thinks her technology was able to find that small amount of a virus so be it.

I still think that if XMRV is in the UK and I think it is - we know VIP Dx is finding it - then it was present in some of those study participants - they just didn't know how to find it.

Maybe I'm naive but I don't think it was the cohort; I think McClure honestly tried to find XMRV - I really don't see the point of putting out a paper that you think very well may be refuted in the future. If there's anything researchers care about it's their reputation! I think she thought she was doing the right thing - that if XMRV was in there that it would show up using her tests; this is the field she works in after all. If she was wrong - as I assume that she was - she was wrong.

IT was Her mistake to get publicly involved in it. It may be that she's too rigid or too stubborn or too positional to take another look at this or to concede that mistakes might have been made. She seems really inflexible. THAT would hurt her reputation, I believe.

 

[Cort]

I'm a bit anxious to hear about the negative Quebec study now, the place I'm from...Hope it's a methodology problem again...I don't doubt their intentions are good on this one because ME is considered a neuroimmune disease and the Montreal University has an infectious disease doctor helping a lot of patients, he even goes to court to help them with insurance problems. It's not like in the UK at all.

Honestly I wouldn't worry too much about the negative Quebec study yet. It's from a small research group - its a pretty small sample size - it just doesn't sound like a very high-powered study. We haven't seen any attempts at replication from these small groups yet. I would assume right now that they used similar PCR techniques to those found in earlier studies. I just don't think we can expect a positive result from any study that does not replicate the WPI's techniques. This result may very well be what should have been expected.

The Groom study contained several well known career CFS researchers as well. Obviously things went off the rails with the WPI on the study but there's no doubt in my mind that they wanted to find a virus (maybe they didn't want to find it enough or didn't have the money to redo their study or whatever - but they're in a different class from Wessely and Kuppeveld.

We shouldn't make the mistake of assuming that because a study has a negative result that the researchers in that study are not on our side. This is a difficult, complex field and XMRV is plainly throwing some loops at these researchers. The fact that both pro and con CFS researchers are having negative results shows that. You can do your best here and still get a negative result.

I don't think that we should think if someone is not doing a replication study fthat they're not on our side. Pathogens are found using many different techniques; while it appears to be clear now that true replication studies are needed that wasn't necessarily clear from the beginning. XMRV could have easily been found using these other PCR techniques and obviously good researchers (aka Groom group) believed that it would be.

 

[Gerwyn]

I think this is the core issue. She's not evil -she's just a researcher working in a particular environment who believe's that her study was accurate.If XMRV really is found in only one of a million cells and is not active to boot in them then it would seem to me that its very possible that any change in a technique from one lab to the other could have tremendous consequences. However, if she still thinks her technology was able to find that small amount of a virus so be it.

I still think that if XMRV is in the UK and I think it is - we know VIP Dx is finding it - then it was present in some of those study participants.

I dont think it would have been Cort Oxford criterea diagnoses idiopathic chronic fatigue or fatigue of a psychiatric origin.Mclure knows that you cant even reliably pick up HIV in PMBc,s with PCR.CFS is driven by diagnostic criterea change your diagnostic criterea and you change your patient cohort.There is no such thing as CFS in any real sense.There are four or five diagnostic criterea so there are four or five different" CFS" cohorts

 

[free at last]

Not sure about the dates of the letters, but the 50 uk samples now in america, may be showing something, otherwise mclure is right. So what point is there in releasing those letters oherwise. what date were the letters released ? did the wpi have the uk samples by then ?

 

[anciendaze]

What can a researcher do without cooperation of clinicians?

After reading one particular letter, in which McClure emphasized that she is not a clinician, I got to thinking about what a mere PhD. (albeit in a very difficult field) can do without cooperation from clinicians. She can't touch a single patient without ethics review involving clinicians, because the primary concern for patient welfare is presumed to lie with clinicians.

Now, just as a hypothetical case, let's pretend she wants to run a quick study on the rate of incidence of XMRV in a population of healthy people readily available to her. (This avoids ethics questions about exploiting sick people for research.) Suppose she puts up a sign on campus asking for healthy volunteers to contribute blood samples. Suppose she assures them no personal information will be collected, and the risks will be minimal. Will Imperial College, and their insurers, allow her to run such a study on her own?

The above assumes she has grant money available to fund this research. Suppose she runs a study like the one published, and says, "this turned out to be more difficult than expected; I would like to look into the problem more deeply." What are her chances of getting more funding when her collaborators on the study disagree? If she makes a stink about it, what impact will this have on other research proposals currently under review?

Getting through the grant process in a matter of weeks is virtually impossible. It looks very much like the tap for money to run the IC study was turned on briefly, then turned off when it had served the purpose for which it was turned on. This is typical of organizational politics in many fields where money for research is always tight.

 

[Gerwyn]

Honestly I wouldn't worry too much about the negative Quebec study yet. It's from a small research group - its a pretty small sample size - it just doesn't sound like a very high-powered study. We haven't seen any attempts at replication from these small groups yet. I would assume right now that they used similar PCR techniques to those found in earlier studies. I just don't think we can expect a positive result from any study that does not replicate the WPI's techniques. This result may very well be what should have been expected.

The Groom study contained several well known career CFS researchers as well. Obviously things went off the rails with the WPI on the study but there's no doubt in my mind that they wanted to find a virus (maybe they didn't want to find it enough or didn't have the money to redo their study or whatever - but they're in a different class from Wessely and Kuppeveld.

We shouldn't make the mistake of assuming that because a study has a negative result that the researchers in that study are not on our side. This is a difficult, complex field and XMRV is plainly throwing some loops at these researchers. The fact that both pro and con CFS researchers are having negative results shows that. You can do your best here and still get a negative result.

I don't think that we should think if someone is not doing a replication study fthat they're not on our side. Pathogens are found using many different techniques; while it appears to be clear now that true replication studies are needed that wasn't necessarily clear from the beginning. XMRV could have easily been found using these other PCR techniques and obviously good researchers (aka Groom group) believed that it would be.

No Cort XMRV could not have found by PCR and Weeselly vetted the patients before entry.If Groom was on our side she would have validated her assay method against the known positive she was given.She would aslo have used that known positive as a control and not the blood from patients with abnormally high levels of endovirus expression which would have inhibited any XMRV present.No scientist designs a study where the conclusions are unfalsyfiable.We also have the little matter of the XMRV in the blood of Kerr's patients that Groom's technique could not detect

 

[Gerwyn]

After reading one particular letter, in which McClure emphasized that she is not a clinician, I got to thinking about what a mere PhD. (albeit in a very difficult field) can do without cooperation from clinicians. She can't touch a single patient without ethics review involving clinicians, because the primary concern for patient welfare is presumed to lie with clinicians.

Now, just as a hypothetical case, let's pretend she wants to run a quick study on the rate of incidence of XMRV in a population of healthy people readily available to her. (This avoids ethics questions about exploiting sick people for research.) Suppose she puts up a sign on campus asking for healthy volunteers to contribute blood samples. Suppose she assures them no personal information will be collected, and the risks will be minimal. Will Imperial College, and their insurers, allow her to run such a study on her own?



The above assumes she has grant money available to fund this research. Suppose she runs a study like the one published, and says, "this turned out to be more difficult than expected; I would like to look into the problem more deeply." What are her chances of getting more funding when her collaborators on the study disagree? If she makes a stink about it, what impact will this have on other research proposals currently under review?

Getting through the grant process in a matter of weeks is virtually impossible. It looks very much like the tap for money to run the IC study was turned on briefly, then turned off when it had served the purpose for which it was turned on. This is typical of organizational politics in many fields where money for research is always tight.

The bulk of the money came from the Lindbury trust set up by Lord Sainsbury which regularily funds Weaslelys work.This seems to be in endless supply.it seems very likely that the money was obtained by our simon who also supplied the patient's blood that had been fozen for a number of years.Mclure would just have run the tests on O.2 ml of blood just to reduce the chance of finding the virus further even if any of the patients actually had,by accident,CCC ME,cfs

 

[xanadu]

Getting through the grant process in a matter of weeks is virtually impossible. It looks very much like the tap for money to run the IC study was turned on briefly, then turned off when it had served the purpose for which it was turned on. This is typical of organizational politics in many fields where money for research is always tight.

The paper is not very up front that the study was run from KCL, the XMRV test merely subcontracted to ICL. It reads as if it's a fresh study, hence general amazement at how quickly it was done and published. Wessely got ethics consent years before to take and store bloods for subsequent unspecified analyses. Old wine in new bottles, so to speak, quoting Wessely.

 

[JillBohr]

I think this is the core issue. She's not evil -she's just a researcher working in a particular environment who believe's that her study was accurate.If XMRV really is found in only one of a million cells and is not active to boot in them then it would seem to me that its very possible that any change in a technique from one lab to the other could have tremendous consequences. However, if she still thinks her technology was able to find that small amount of a virus so be it.

I still think that if XMRV is in the UK and I think it is - we know VIP Dx is finding it - then it was present in some of those study participants - they just didn't know how to find it.

Maybe I'm naive but I don't think it was the cohort; I think McClure honestly tried to find XMRV - I really don't see the point of putting out a paper that you think very well may be refuted in the future. If there's anything researchers care about it's their reputation! I think she thought she was doing the right thing - that if XMRV was in there that it would show up using her tests; this is the field she works in after all. If she was wrong - as I assume that she was - she was wrong.

IT was Her mistake to get publicly involved in it. It may be that she's too rigid or too stubborn or too positional to take another look at this or to concede that mistakes might have been made. She seems really inflexible. THAT would hurt her reputation, I believe.

After thinking about this, it could have been that she was pressured to release the paper and come out with a public statement. Science can be very strange that way. My ex co-authored a paper that he was very uncomfortable with and did not want to publish it but was pressured by his peers (well, actually one person but he was very influential and you did not want to mess with him) to get it out. It is rigourous process because you have to write a proposal, get it approved for funding and then you always have to publish. Her reaction sort of reminds me of my ex distancing himself from those particular colleagues and moving on to other things.

 

[anciendaze]

Funding, cells

The bulk of the money came from the Lindbury trust set up by Lord Sainsbury which regularily funds Weaslelys work.This seems to be in endless supply.it seems very likely that the money was obtained by our simon who also supplied the patient's blood that had been fozen for a number of years...

This sounds unusually direct. The general way of achieving such control in response to sudden developments is by a wink and a nod w.r.t. "repurposing" funds from an existing grant. If the researcher doesn't upset anyone who reviews grants, this is completely harmless. If they make enemies, the resulting investigation into irregularities in spending research money will hang over their head.

Mclure would just have run the tests on O.2 ml of blood just to reduce the chance of finding the virus further even if any of the patients actually had,by accident,CCC ME,cfs

Do you have direct evidence of tiny sample quantities? I don't remember anything very precise, and have been wondering about estimates of the number of PBMCs.

Perhaps excessive use of irony should be added to the list of symptoms.

 

[Gerwyn]

This sounds unusually direct. The general way of achieving such control in response to sudden developments is by a wink and a nod w.r.t. "repurposing" funds from an existing grant. If the researcher doesn't upset anyone who reviews grants, this is completely harmless. If they make enemies, the resulting investigation into irregularities in spending research money will hang over their head.

Do you have direct evidence of tiny sample quantities? I don't remember anything very precise, and have been wondering about estimates of the number of PBMCs.

Perhaps excessive use of irony should be added to the list of symptoms.

The volumes are in the paper.The ethics committee approval was given some years earlier.the study was actually registered to Weasely,s department.Lord sainsbury is well known for funding Weasely,s work.only the testing was done at IC.that is how it was done so quickly.The money was sitting in wait and the approval was already in the bagT

 

[fred]

Lord sainsbury is well known for funding Weasely,s work.

Gerwyn, do you know which Lord Sainsbury this is - Preston Candover (John) or Turville (David)? The former controls the Linbury Trust with his wife Anna. And do you know why they fund so much ME research? Is there a family interest?

 

[flex]

Fred

Probably for the same reason that they fund Ben Goldacre and are putting up much of the grant for the LP study on children to be run by an NHS hospital. Whatever that reason is its yet to make sense to me. Do they have interests in Insurance companies especially companies like ATOL or UNUM?

Also Lord Sainsbury David Turville was Tony Blairs Science Minister in the Department of Trade and Industry for some strange reason which coincided with him donating large some of money to the Labour party. He was one of the main characters in the "cash for honours" saga where the police questioned Tony Blair. No surprise Lord Sainsbury has now abandoned ship and recently declared his support for David Cameron.

Check this link its shedding light on things a bit more.
http://www.lobbywatch.org/profile1.asp?PrId=116

 

[fred]

Fred

Probably for the same reason that they fund Ben Goldacre and are putting up much of the grant for the LP study on children to be run by an NHS hospital. Whatever that reason is its yet to make sense to me. Do they have interests in Insurance companies especially companies like ATOL or UNUM?

Also Lord Sainsbury David Turville was Tony Blairs Science Minister in the Department of Trade and Industry for some strange reason which coincided with him donating large some of money to the Labour party. He was one of the main characters in the "cash for honours" saga where the police questioned Tony Blair. No surprise Lord Sainsbury has now abandoned ship and recently declared his support for David Cameron.
http://www.lobbywatch.org/profile1.asp?PrId=116

Lord (John) Sainsbury of Preston Candover runs the Linbury Trust which funds Esther Crawley's research at the MIN, the latest being a pilot of the LP on children (which is also part-funded by the Ashden Trust, run by Lord John's daughter, Sarah Butler-Sloss).

Lord (David) Sainsbury of Turville (Lord John's cousin) is a Labour peer and still is (I believe) one of the largest donators to the Labour party. His support of Cameron was, allegedly, via training sessions for shadow cabinet members.

http://www.timesonline.co.uk/tol/news/politics/article6718065.ece

The funding for ME research appears to come mainly from the Linbury Trust, which is Lord John's Trust. Lord John is 83 and appears to spend most of his time and resources on philanthropic ventures, mainly to do with the arts, education and heritage.

ME research seems an odd bedfellow for these other ventures. Indeed, only 5% of the Linbury Trust funds are used for medical grants.

ME research is an even stranger bedfellow for the Ashden Trust, which is more associated with environmental projects in developing countries.

The links have yet to make sense to me too.

 

[flex]

Paul Drayson now Lord Drayson became Science Minister after Sainsbury in 2007/8,
check out this link for claims around Tony Blair, Drayson, donations to labour party and links to big pharma and vaccines.

http://www.schoolhistory.co.uk/forum/index.php?showtopic=3743

 

[anciendaze]

...The links have yet to make sense to me too.

While I am an American, without experience with a peerage, the kind of thing motivating this in wealthy and prominent families often turns out to be a family member who is not quite a skeleton in the closet, but certainly not reliable enough to be placed in charge of vast enterprises. It helps to have discrete and sympathetic doctors who can prevent said relative from forcing the issue in a public scandal. (This does not say said relative really is competent. There are some real lulus around who can just barely be kept from taking advice from ascended masters, and booking passage on astral transportation.)

 

[justinreilly]

I don't think it helps our cause if we start making degrogatory comments about other researchers. She may have been set up or used unknowningly by the politics of the situation. We don't know but it sounds like she is pissed off as being the point person on this when maybe other nameless culpits were behind the scenes setting her up. Because of this, she doesn't want to be associated anymore with this research especially if later research nullifies her results....perfectly understandable.

McClure went out of her way to say some vicious defamatory things about WPI and their study to the BBC. Her actions have been anti-science and cowardly.

 

[justinreilly]

Mclure knows that you cant even reliably pick up HIV in PMBc,s with PCR.

Very interesting and reassuring. Makes McClure seem even more craven to me.