*2 new* letters, Myra McClue, Annette Whittemore

[anciendaze]

researchers vs. clinicians

If you put the known letters in sequence, and assume a rather personal missing letter, there is an interesting between-the-lines message. McClure makes a point of saying she is not a clinician, and cannot take responsibility for treating patients. This may be the key to her participation in that study.

Treatment, and patient management in research studies, are handled by clinicians. When there are ethical considerations about proposed research, these questions are typically forwarded to experts who are presumed to be immune to the crass concerns of researchers building careers. Under current guidelines, funding and administration, McClure is beholden to the people who wrote the guidelines, trained clinicians, channeled funding and staffed research ethics review. She can't just go off and choose her collaborators, and she can't get funding approved beyond what those collaborators will support. (Remember the quotation by White about the ethics of subjecting patients to all those needless tests that won't make a bit of difference in their treatment?)

It looks like an old-boy network, with a few old-girls, has once again short-circuited independent research. Every title we view as giving her greater stature, and more independence, is another restraint on her actions and opinions. If she bucked the system, one can only imagine heads nodding as someone says, "She made a strong showing at the start of her career, but now I'm beginning to wonder if she's really sound."

 

[Adam]

Good points anciendaze. You know your stuff.

 

[Kati]

Mrs Whittemore is not bound by professional communication protocol. Mrs Whittemore is amongst other things, an advocate and a mother hen watching over her chicks. She has many many chicks to watch over these days, but she's doing a very very good job to protect from coyotes.

 

[free at last]

Of course it would be nice to keep these emails between those concerned, and lets get to the truth to help the patients approach. But i think Mrs Whittemore must be frustrated by that kind of response, and is sharing with us the appalling sorry i dont give damn anymore response of Mclure.

she does a study for a man that has harmed so many [people might be dead for all the help hes given hes uk patients ] through non validated testing, then finds not a trace of the only virus that has given the ME CFS community real hope for the future.

further damaging that hope. Then turns her back when offered a chance to redeem herself, to help the suffering. To help find the possible truth that she has so far helped sidetrack.

Typical aint it. Wonder if she would have given that response if a child of hers was sufferring re occuring flu attacks typical of ME, with a look on there face that says HELP ME MUMMY. No i think not. If she didnt want to get involved fine, she could have stayed out of it.Thats ok by me, not a probem wth that at all.

But to do suspect testing, helping Simon keep hes comftable position. Then publish damaging conclusions to such said watch Myra SUSPECT TESTING. Is really taking the wee wee isnt it. Mrs Whittemore is right to show us how bad poltics, money saving, face protecting, career saving, lack of really giving a damm for those that might just take there lives with this horrible illness.Do the brave thing Myra help the WPI find the truth if it turns out XMRV is not the ME CFS helper, so be it, at least in your heart you tried. People will love you for it.Or you could do the other thing thats easier, Please be brave. dont turn your back, when maybe, just maybe, you really can help.This could be your finest hour.Thank you Mrs whittemore, The worlds a kinder place with your determination, and Judys genius. Even if its not our time for XMRV to be the cause of illness to so many in our country, we can see you care more than our fellow countrymen Do,Thats what love for a child brings to the world.That love radiates further really it does. Just restores faith in my view of human kind.That other things just seem to destroy.
And we all know what that is. Politics should never come before caring.

 

[thegodofpleasure]

But to do suspect testing, helping Simon keep hes comftable position. Then publish damaging conclusions to such said watch Myra SUSPECT TESTING. Is really taking the wee wee isnt it. Mrs Whittemore is right to show us how bad poltics, money saving, face protecting, career saving, lack of really giving a damm for those that might just take there lives with this horrible illness.Do the brave thing Myra help the WPI find the truth if it turns out XMRV is not the ME CFS helper, so be it, at least in your heart you tried. People will love you for it.Or you could do the other thing thats easier, Please be brave. dont turn your back, when maybe, just maybe, you really can help.This could be your finest hour.Thank you Mrs whittemore, The worlds a kinder place with your determination, and Judys genius. Even if its not our time for XMRV to be the cause of illness to so many in our country, we can see you care more than our fellow countrymen Do,Thats what love for a child brings to the world.That love radiates further really it does. Just restores faith in my view of human kind.That other things just seem to destroy.
And we all know what that is. Politics should never come before caring.

Professor McClueless clearly needs a way out of the mess that she has got herself into. Her letter to Annette Whittemore has "I want out of this, please leave me alone" written all over it.

I agree with you Free at last - Prof. McClueless has one last opportunity to demonstrate her humanity. If she chooses to ignore that chance, she will deserve the torrent of derision that will then ultimately come her way.

TGOP

 

[V99]

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

 

[fred]

Please tell me that my following thought carries no weight and that I shouldn't be worried.

I get concerned a bit that the WPI is posting what seems to be private correspondence (with a few missing as one astute reader inferred) on their website. I'm not sure that this will win friends and influence people within the scientific community. Other researchers, funders etc that we really want involved, might want to stay away because of this.

I do not believe that Annette Whittemore would publish McClure's letter without the latter's permission.

Also, the fact that there are two letters missing from the sequence of publication implies to me that permission to publish has not been given for certain correspondence and that this has been observed.

The letter from McClure which has been published looks like a personal one. McClure would be able to give permission to publish this. If the presumed first (but missing) letter from McClure was written on behalf of ICL and on ICL headed paper, then McClure may not have been in a position to approve its publication.

Further, Annette's unpublished email to McClure (dated 23 April) sounds like it contained very personal details and I can understand why the former may not wish to put this in the public domain.

 

[Dr. Yes]

Brilliant deductions, Holmes! ... But what the deuce has that got to do with the Hound?

 

[fred]

Brilliant deductions, Holmes! ... But what the deuce has that got to do with the Hound?

Grimpen Mire McClure.

 

[ukxmrv]

If Dr McClure is not a clinician and has no experience with treating patients then why the huge hurry to publish the study and why the claim that the hurry was somehow associated to retro-viral drugs use by patients?

If Dr MClure was merely a clinician (and not a politician) then the use of retro-viral drugs (for which she had no proof in the UK anyway?) would have been of no concern to her.

 

[V99]

ukxmrv
If Dr McClure is not a clinician and has no experience with treating patients then why the huge hurry to publish the study and why the claim that the hurry was somehow associated to retro-viral drugs use by patients?

If Dr MClure was merely a clinician (and not a politician) then the use of retro-viral drugs (for which she had no proof in the UK anyway?) would have been of no concern to her.

Look to Wessely.

 

[julius]

If Dr McClure is not a clinician and has no experience with treating patients then why the huge hurry to publish the study and why the claim that the hurry was somehow associated to retro-viral drugs use by patients?

If Dr MClure was merely a clinician (and not a politician) then the use of retro-viral drugs (for which she had no proof in the UK anyway?) would have been of no concern to her.

What she said about her study being a response to the testing was full on BS. The ICL study was started before the Science study was even published!! And long before any talk of a commercial test being made available.

I'm not sure of the dates, but I think the Mclure study was started (or first submitted) in August 09. The Science study was published in Oct 09, and testing was available in Nov 09.

 

[Gerwyn]

What she said about her study being a response to the testing was full on BS. The ICL study was started before the Science study was even published!! And long before any talk of a commercial test being made available.

I'm not sure of the dates, but I think the Mclure study was started (or first submitted) in August 09. The Science study was published in Oct 09, and testing was available in Nov 09.

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

 

[Gerwyn]

McClure's email read very informally to me, and I really hope WPI had her permission to publish it. The CFS community is best served by lots of rigorous research, and the accompanying rigorous discussion/debate among researchers. I don't have any idea whether WPI had McClure's permission, but IF they didn't and they published a direct personal email communication without her permission, I share shrewsbury's concern about a chilling effect on the dialogue. I want everyone to be talking to each other, sharing results and information. We do not want any researcher to think "I'm not going to email WPI (or any other entity) because it might end up on their website." Members of this forum and others have rightly sought permission before publishing personal communications, and when it became apparent permission was not given, forum members have deleted the posts involved. But if WPI had McClure's permission then that makes all the difference. Like I said, I don't know the facts of whether permission was given, so this is all speculation.

I agree jenny we need rigerous research which means no more of what the Europeans were dishing out.We also need rigorous independent researchers.I loved the way that john Coffin described the European research as "thin".In retrovirological research terms that is equivalent to a slap in the face.One of the problems with research into myalgic encephalopathy(to use the new name)is clandestine activity which never surfaces in the public domain.If someone knows that their samples have tested positive elsewhere but does not report the matter to the journal considering their study then that information rightly belongs to all of us.In my book transparency overrides protocol in these matters.So i really don't care whether permission was given or not.There are too many people who are suffering who need a cure and either way the decision to publish the correspondence was correct

 

[Cort]

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.

 

[Cort]

So i really don't care whether permission was given or not.There are too many people who are suffering who need a cure and either way the decision to publish the correspondence was correct

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!

 

[akrasia]

The assertion that the WPI has alienated the retrovirology research community seems unsupported to me. On the contrary, Mikovits has deep roots in that world and A very warm and long standing relationship with both Frank and Sandra Ruscetti, as well as ongoing support from Robert Silverman.

What they are up against is the ongoing prejudice against the disease. M.E./CFS isn't a legitimate subject of study therefore the Science article must be fatally compromised; it can't possibly be saying what it seems to be saying. I'm sure both Judy and Annette were both terribly dismayed when the taps didn't open and they're experiencing, again as we all are, just how much inertia the demialist view has. It has very little to do with being "nice."

Myra content: Given that Ruscetti is one of the organizers of the upcoming conference, it's a good bet that JM signed off on McClure's participation. And who knows, maybe some cooping is going on.

 

[starryeyes]

I'm grateful we have the Whittemores and Mikovits in our corner. I applaud them for being as transparent as possible which benefits us. There has been so much negative speculation against them... the more transparent they are the less our enemies can make erroneous claims about them and the important work they're doing.

 

[V99]

No one can say that the Nijmegen study did no have time to make this information known.

 

[starryeyes]

:tear: That's very true V99.