*2 new* letters, Myra McClue, Annette Whittemore

[Gerwyn]

This is with regard to the letter - which seemed to me to be OK to publish. I understand the need to be transparent. but the WPI also needs to be able to reach out to the research community and interact with them and support them and get supported by them in order to work effectively on XMRV. They need to be able to get grants which means not having people on a grant review panel with an axe to grind against them because one of their colleagues is upset. If they didn't have permission and McClure would be upset over seeing it posted publicly then I think it would have been a bad decision to post it. I assume she had permission since she and Dr. McClure seemed to be operating on a more personal level.

A part of a long term strategy for being an effective research institute is having good relations with your peers. I imagine that makes everything so much easier. I think that needs to be taken into account. I'm not saying that it wasn't here - I just think, in some areas, protocol overrides transparency.

With regards to not publishing the contrary results it appears that neither protocol nor transparency was followed by Kuppeveld and Groom and that following protocol required a level of transparency which obviously didn't happen!

I think they tried hard with Mclure Cort despite her cler breach of scientific protocol.She has refused to participate in an exchange of samples and wants nothing more to do with CFS research or have her techniques examined for effectiveness.

She had enough faith in them to state that there is no XMRV inthe UK but not as much faith now it seems

 

[Gerwyn]

I think the letter shows it really works for researchers to connect on a personal level. Annette apparently went out of her way to explain her involvement in XMRV - she let her guard down - and McClure responded appropriately to lower the emotional tone of the debate. Definitely helpful.

It would have been nice to see McClure participate but I guess it was always a longshot. In any case I still don't think the study would have mattered much to XMRV's ultimate fate. I think that is being decided right now by the labs which are apparently doing very rigorous and comprehensive studies. It could have been, though, that McClure could have done the study quickly and gotten the results out quickly - just as she did before - which definitely would have helped the WPI if they were positive.

I'm really surprised that we haven't seen any other studies in over two months I think it is - the longest gap there's been.

I think retrovirologists have realised how complex the procedures for detecting XMRV are and are quite rightly taking the greatest care possible.They certainly would not be accused of producing substandard, or as John Coffin put it,"thin" research like the English Dutch and German produced.Like Dr Bell opined "you cant investigate this illness superficially.The work by Ruscetti,Silveman Mikovitis et all took many months.It is not surprising that a study taking just two weeks(The IC study) was seen as such a shambles

 

[gu3vara]

I think retrovirologists have realised how complex the procedures for detecting XMRV are and are quite rightly taking the greatest care possible.They certainly would not be accused of producing substandard, or as John Coffin put it,"thin" research like the English Dutch and German produced.Like Dr Bell opined "you cant investigate this illness superficially.The work by Ruscetti,Silveman Mikovitis et all took many months.It is not surprising that a study taking just two weeks(The IC study) was seen as such a shambles

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.

 

[flex]

One good thing has come out of this correspondence and that is that we have a direct postal address for Mcclure. Why don't we send her a letter asking her more taxing questions with no wiggle room. If she doesn't reply it shows more desire to run and hide and we will have a record on it. Ask her about the samples and her opinion of ME and her techniques and if she considers them sensitive enough to detect XMRV regarding the science paper.

Ask her why she thinks the samples were supplied by a psychiatrist and whether she thinks that was appropriate regarding the nature of ME being officially coded as a neuro immune disease.

Its time for people to be put on the spot. Let her scapegoat you know who.

Any takers? Gerwyn?

 

[Alexia]

I'm a bit anxious to hear about the negative Quebec study now, the place I'm from...

Now I'm lost, has there been a Canadian study? I only new about a Swedish study that promised to have some results this Summer .

 

[flybro]

I've been thinking about the 'rightness/smartness' of the WPI's publishing of the correspomdence that it has.

Initially it made me a little nervous re:- other groups wanting to work with them.

However I think the WPI is more interested in getting to the bottom of ME.

They are making it loud and clear that they will not be doing any under the table correspondence.

I hope this proves to be the new way of communicating amongst researchers, it shouts be up front and honest or get lost.

Imagine if every copy of correspondence that has to do with ME would have been publicly accesible from the off.

I'm pretty sure their would'nt be such a a thick slime of controversy covering the facts.

Mrs Whittmore is saying come-on lets get this done. Everyone else is saying go away we're busy, or its beyond my pay scale.

J.Mivoitch and the WPI are possibly in shock at the race amongst prostate cancer XMRV studies, and the race amognst 'researchers' to deny the existence of XMRV in ME/CFS subjects, or just to distance themselves from the ME/CFS XMRV studies.

Dr Bell also commented that he always expected science to be the winner, I think he to is shocked at the global response to XMRV and ME.

Where has being polite got any of us with this disease?

 

[Gerwyn]

I've been thinking about the 'rightness/smartness' of the WPI's publishing of the correspomdence that it has.

Initially it made me a little nervous re:- other groups wanting to work with them.

However I think the WPI is more interested in getting to the bottom of M

They are making it loud and clear that they will not be doing any under the table correspondence.

I hope this proves to be the new way of communicating amongst researchers, it shouts be up front and honest or get lost.

Imagine if every copy of correspondence that has to do with ME would have been publicly accesible from the off.

I'm pretty sure their would'nt be such a a thick slime of controversy covering the facts.

Mrs Whittmore is saying come-on lets get this done. Everyone else is saying go away we're busy, or its beyond my pay scale.

J.Mivoitch and the WPI are possibly in shock at the race amongst prostate cancer XMRV studies, and the race amognst 'researchers' to deny the existence of XMRV in ME/CFS subjects, or just to distance themselves from the ME/CFS XMRV studies.

Dr Bell also commented that he always expected science to be the winner, I think he to is shocked at the global response to XMRV and ME.

Where has being polite got any of us with this disease?

Does anyone know where the first letter to the WPI from Mclure is posted

 

[usedtobeperkytina]

If permission is granted, no problem publishing this correspondence.

This is a matter of public concern, not just because of people being sick, but because we have claims of bad science on both sides. And science is about finding truth. So exposing flaws or unethical publication is matter of public concern, in fact there is an obligation to reveal it.

What I find interesting is that I would not imagine McClure would accept the WPI offer. We have egos involved. WPI is saying "Since you don't know how to find it, here, I will help you. I'll give you what you need and I will show you how to do it."

While it is true, WPI and VIP (by the way) can find it fairly accurately, such statements to a well-known, well-respected retrovirologist has to be demeaning.

I think ego is such a major problem in scientific advancement in many areas of research. Second corrupting problem is bias, third is money greed.

CFS research is not unusual in getting blows from such assaults.

Tina

 

[fred]

Does anyone know where the first letter to the WPI from Mclure is posted

It hasn't been published. A Freedom of Information request has been submitted to ICL to access it.

 

[pollycbr125]

I'm a bit anxious to hear about the negative Quebec study now, the place .

have i missed something somewhere i didnt know there had been a negative Quebec study?

 

[anciendaze]

not a virologist?

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)

Individual authors of portions of that editorial are not identified, but a comparison of text reveals who wrote the largest portion. McClure's name was necessary to give it any credibility. Wessely has nothing to lose.

Does McClure recognize the way she has been set up to take blame for his opinions?

 

[xanadu]

Does McClure recognize the way she has been set up to take blame for his opinions?

And who does she believe now? A mother fighting to save her daughter? Or a politician fighting to save his career?

 

[subtr4ct]

have i missed something somewhere i didnt know there had been a negative Quebec study?

Over here. Just a title of an upcoming conference poster at this point. Nothing published or peer-reviewed yet; nothing known regarding the adequacy of the methodology or cohort.

 

[HowToEscape?]

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.

 

[oerganix]

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)


Individual authors of portions of that editorial are not identified, but a comparison of text reveals who wrote the largest portion. McClure's name was necessary to give it any credibility. Wessely has nothing to lose.

Does McClure recognize the way she has been set up to take blame for his opinions? "

I think she realizes she was set up, probably by his manipulation of the samples in some unethical way. I think she has analyzed her situation, taking note of the fact SW has been successful for decades in getting this disease discounted as a physical one, and that he is still a position of power, or multiple positions of power...able to influence the course of her career in many ways. At least for now.

SW and clones, including the GOBSATTs at CDC, were able to eclipse or disappear most of the important research on this disease, including most especially that earlier research indicating a possible retroviral involvement, so she is betting that they will be able to do it again.

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.)

IF this letter is her latest thinking on this subject, she has decided to gamble that SW and gang will be able to pull the wool one more time. Her Australian radio interview gave me the impression she was edging away from SW, but I don't know what date that took place, so this letter may be her latest thinking. Too bad, really. If SW can't bamboozle his way out of this one, her prostate research may suffer, too. The price of being a parrot, I guess.

As for SW rushing to comment on virology research, why limit himself in any way? He's been commenting on other biomedical research for years, spinning it all around backwards, to "prove" that all the admittedly real physical symptoms of ME/CFS have been produced by the brain, through false illness beliefs.
​

 

[oerganix]

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.

I'm afraid you'd have to give the politicians, insurance execs and Reeves the honor of "giving scientists the feeling that ME folk are" ...(your version of nutty). FWIW, some if not many on this forum are part of the anti-vax "crowd" and, I for one, am part of the 9/11 conspiracy "crowd", having read the scientific evidence for it. And please don't lump us in with the creationist "crowd". We anti-vax-ers and 9/11 truthers rely on science for our opinions. Creationism regards science as a competing religion.

As both Mikovits and McClure have said, they didn't (or don't) know anything about ME/CFS until someone with the money and/or the samples asked them to do the research on XMRV (in McClure's case) or to find the cause of CFS (in Mikovits' case). Just another example of how scientists are driven by science, but the funding for the work they do is driven by politics, or in the case of WPI, personal involvement with the illness to be researched. And notice who is influenced by patients in general: usually the politicians, not the scientists.

As for "harrasment", I wouldn't consider calling out McClure on her poor science or her disengenous excuses for it to be that. She gave phony excuses for rushing her "study", as in, to save us dumb patients from spending money on tests and drugs, but now she says she's done with CFS. Short attention span when it comes to us dumb patients', I guess.

 

[julius]

According to mclure herself the study took two weeks.it was submitted fro publication in Dec 09 and published two days after submission That is according to the Plos one records.Wherer did you get that nugget of information from.It could be very important

Hey Gerwyn,

I am almost certain that I read those dates during the discussion on that long thread about the ICL study. I think it was on the plos one website. I will look around and see if I can find it. I could be mistaken, but I am pretty sure I am remembering correctly.

 

[Gerwyn]

Hey Gerwyn,

I am almost certain that I read those dates during the discussion on that long thread about the ICL study. I think it was on the plos one website. I will look around and see if I can find it. I could be mistaken, but I am pretty sure I am remembering correctly.

thanks Julius

 

[flex]

What a coincidence, 9th December 09, the same day as the alleged doctors complaint over Dr Sarah Myhill.

 

[julius]

According to mclure herself the study took two weeks.it was submitted fro publication in Dec 09 and published two days after submission That is according to the Plos one records.Wherer did you get that nugget of information from.It could be very important

Nope, can't find it. I'm thinking it was a different study and I got it confused in my head over the months. If I ever do find it I will let you know.

Carry on, don't mind me.