Lipkin Study Press Conference 18th Sept

Esther12

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re Lipkin: "This is not a psychosomatic disorder, these people are sick"

While most of those taking a psychosocial approach to CFS seem to be quacks, and many of them have done a great deal to harm patients, I'm a bit worried that this could give the impression that suffering from psychosomatic problems means that someone is not truly sick. There seems to be a lot confusion over what is meant by 'psychosomatic disorder' (and 'sick' really), and I'm sure that Lipkin didn't intend to sound dismissive of anyone's health problems, but I think it is good to try to be careful about the way in which one talks about mental health problems, so as to not end up promoting unreasonable views about those who are suffering from them.
 
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re Lipkin: "This is not a psychosomatic disorder, these people are sick"

While most of those taking a psychosocial approach to CFS seem to be quacks, and many of them have done a great deal to harm patients, I'm a bit worried that this could give the impression that suffering from psychosomatic problems means that someone is not truly sick. There seems to be a lot confusion over what is meant by 'psychosomatic disorder' (and 'sick' really), and I'm sure that Lipkin didn't intend to sound dismissive of anyone's health problems, but I think it is good to try to be careful about the way in which one talks about mental health problems, so as to not end up promoting unreasonable views about those who are suffering from them.
I see what you mean but think the real problem was my paraphased quote in the headline which was rather misleading, so my fault rather than Lipkin's. I have now amended it to "This is not a psychosomatic disorder..." Lipkin was pointing to the immune abnormalities which would not be expected in a psychosomatic disorder. I don't think it's easy to see this as disparaging, but watch the video slot yourself and see what you think.
 
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I'm always very impressed with Lipkin. He didnt get where he is without being really smart, good at the science, a good administrator/leader and politically astute. He clearly shielded Drs. Mikovitz and Ruscetti. It makes me a little concerned about what deals were made behind the scenes but at this point I am willing to believe that his heart is in the right place and he is sincere in his prognosis of good things to come from further research.

An example of his political skill was the way he dodged the question from Hillary about XMRV and prostate cancer and why there has been no big rush to retract and re-examine that work. But he promised to talk about it in private with her.

He also dodged the question from Hillary about the chimera viruses in labs. He focused his answer on the ones that are made on purpose and the scientific community's attention to coming up with guidelines. Totally ignored the fact that XMRV was supposedly made by accident and the labs were ignorant of its existance and the contamination of lab materials by it until the whole XMRV/CFS thing brought it into the open.

I was a bit disappointed in the response to the question about looking for the virus in lymph tissue. Like Andrew I have some lingering questions about antibodies, and viruses that hide in tissue and arent seen in the blood. I havent read the paper yet though.

Lots of positive good stuff though. I like the way he explained that earlier events can lead to abnormal responses to later infectious agents. Those early events could be prior infections. They are going to take a close look at host response.
 

Esther12

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re psychosomatic: Ah... okay. I haven't seen the video, and know that people can see 'psychosomatic' as synonymous with 'not real', so thought that he may have been using 'psychosomatic' in that lay manner.

I don't really know why, as I know nothing about this area, but I feel instinctively sceptical when I hear people talk about immune abnormalities in CFS. I think I'm sceptical of any claim at all about CFS at this point, perhaps because I tend to read Oxford criteria psychological papers. I should probably try to find the time to look more seriously at the evidence around CFS and immune abnormalities. (Actually, that doesn't sound super fun).
 

WillowJ

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Lipkin wont answer Hilary Johnsons question about the valididty of the XMRV prostate cancer studies. He says he wont discuss it 'online' and looked uncomfortable - he described it as 'off point'
I thought the answer to that was pretty simple? XMRV was very flamboyant to ME/CFS, would be a possible eitiology, and given the lack of respect, an eitiology would be comparatively much more important. comparatively, XMRV is much less important to cancer, as cancer is already an attractive field to research. some kinds get more research than others, but all kinds of cancer get clinical respect.
 

WillowJ

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I have ME /cfs (Dr rey @ Klimas group diagnosed me) I have low NK cell number, T cell low, High B cell and other abnormalities, Reactivation of Parvo, HH6Av, EBV, Coasakie.

I do not sweat EVER. I think is part of my dysautonomia. Did have gradual onset.
Also interesting, they are not giving me antiviral drugs so far (titters not high enough for antiviral prescription), they are treating the immune system(imunovir+equillibrant+supplements) and see if I can fight them off by myself.
I do not sweat NOW, but I used to have night sweats.
 

Esther12

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I do not sweat NOW, but I used to have night sweats.
I'm really doubtful about all the different criteria for CFS, so expect that none would be perfect. Something like 'night sweats' seems unlikely to be a cardinal symptom. Hopefully they'll be doing the study in a way which will allow for the identification of sub-types, rather than assuming they have a set of 'pure' CFS samples.
 

user9876

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I thought the answer to that was pretty simple? XMRV was very flamboyant to ME/CFS, would be a possible eitiology, and given the lack of respect, an eitiology would be comparatively much more important. comparatively, XMRV is much less important to cancer, as cancer is already an attractive field to research. some kinds get more research than others, but all kinds of cancer get clinical respect.
New study confirms erroneous link between XMRV virus, prostate cancer

http://medicalxpress.com/news/2012-09-erroneous-link-xmrv-virus-prostate.html
 

user9876

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I'm really doubtful about all the different criteria for CFS, so expect that none would be perfect. Something like 'night sweats' seems unlikely to be a cardinal symptom. Hopefully they'll be doing the study in a way which will allow for the identification of sub-types, rather than assuming they have a set of 'pure' CFS samples.
He did say that these were the people most likely to have a persistant infection hence the choice - this makes sense when hunting a virus. I'm not sure if it will help in other immune system studies but it may be that he feels that these symptoms might corrospond to more obvious problems,
 

ukxmrv

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That's the problem user 9876.

Were CFS or ME patients selected on the wrong criteria for the study?

As I said earlier I'm an acute onset ME patient from an epidemic. If there was a criteria that includes some of the things he mentioned then I wouldn't be in the study. Yet I test positive for immune problems and infections.

Why didn't he say "patients from a known epidemic" of ME or CFS as being likely to be included.

Here we are nearly 30 years after the epidemics that gave rise to "CFS" and we are no further forward to explaining them.

If the patient population isn't right then we may never have answers to this group. I'm hearing alarm bells from his talk last night.

Back to the Hanson paper. If Lipkin had been looking at the Bell patients as a group what would have been found?
 

VillageLife

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..


New post by Dr Michael Snyderman on Dr Jamie Deckoff Jones blog.


Called....We Must Move Foward

http://www.x-rx.net/blog/


This from Dr Snydermans new post!

Quote
The quest for identifying and treating retroviruses that are involved in the pathogenesis or CFS/ME, neuroimmune, autoimmune and neoplastic disorders will not end today despite the negative results of the XMRV, pMLV study. I have CFS/ME and cancer. My data supports the presence and importance of retroviruses in the pathogenesis of both disorders and the potential for anti-retroviral drugs to help us.
 

VillageLife

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New Post from Dr Snyderman in the comments:


Quote
Since potentially many millions of people are infected and ill,
there is a huge market for new drugs and I am hoping the pharma
people will see that and fund studies. I don’t know for sure what
retrovirus(es) I have. Dr.Mikovits identified a Gag sequence that
was not XMRV and a researcher in the University of Alberta cloned a
Pol sequence that was that of a beta retrovirus. Dr.Mikovits had
EMs of CFS lymphocytes showing either gamma or beta or both
retroviruses and I may have both. I believe her EMs were prior to
any contamination.
 

currer

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re psychosomatic: Ah... okay. I haven't seen the video, and know that people can see 'psychosomatic' as synonymous with 'not real', so thought that he may have been using 'psychosomatic' in that lay manner.

I don't really know why, as I know nothing about this area, but I feel instinctively sceptical when I hear people talk about immune abnormalities in CFS. I think I'm sceptical of any claim at all about CFS at this point, perhaps because I tend to read Oxford criteria psychological papers. I should probably try to find the time to look more seriously at the evidence around CFS and immune abnormalities. (Actually, that doesn't sound super fun).
Esther I cannot believe you are serious.
My consultant was a top immunologist and he was clear that there were definite immune abnormalities in ME.
That is why he got patients referred to him in the first place, and went on to develop an interest in this disease.

The only reason the immune disorder is not better known about in ME is because although there are clear abnormalities, no-one knows what their significance is, nor can these abnormalities be treated yet.

So in the UK they do not bother to test for immune dysfunction.( Because they would not treat any abnormalities that the test showed.) As a medical decision this is purely a practical economy, and must not be confused with no immune abnormality existing.

However, this immunologist did use immunovir, an immune modulator, in patients who wanted to try this, with some success (two thirds responded). He was unsuccessful in getting funding for an RCT for this drug, though and NICE would not accept his research because there was no RCT. (Chicken and egg)
 

WillowJ

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New study confirms erroneous link between XMRV virus, prostate cancer

http://medicalxpress.com/news/2012-09-erroneous-link-xmrv-virus-prostate.html
"It's been known for over a year that XMRV was the result of lab contamination. I couldn't rest until we figured out how it happened. It felt like the right thing to do was to collaborate with Dr. Chiu and the others to get the answers," said Robert Silverman, PhD, interim chair of Cancer Biology at the Cleveland Clinic and one of the authors of the original study. "I'm gratified that we finally got to the bottom of the story."
the right thing to do, yes

study here: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0044954 (I have not read it)
 

WillowJ

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The only reason the immune disorder is not better known about in ME is because although there are clear abnormalities, no-one knows what their significance is, nor can these abnormalities be treated yet.
and because article reviews use Oxford (and 'Empiric') criteria to make it appear that these results are much more inconsistent, as they are then mixed with results from patients having fatigue from multiple undetermined causes.
 

Andrew

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Mikovits/Alter/Lo originally found XMRV/PMLV in blood in humans - this they have now shown to be a false positive. Harvey Alter added that while it was technically possible that viruses could be hiding in organs, he said it was exceptionally unlikely that nothing would spill over into the blood. Both Harvey and Mikovits indicated they thought the XMRV/PMLV hypothesis was dead in any form.
Yes, I saw that. But I wonder if they were thinking in context of the monkey study.
 

SOC

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and because article reviews use Oxford (and 'Empiric') criteria to make it appear that these results are much more inconsistent, as they are then mixed with results from patients having fatigue from multiple undetermined causes.
Exactly, Willow. So much about ME/CFS is said to be ambiguous because the study cohorts are so poorly selected that no consistent pattern can be found in medical testing. The little research we have where the cohort selection was better show a number of abnormalities -- especially immune abnormalities.

I think the cohort selection for the Lipkin et al XMRV/pMLV study was as good as we're going to get at this time -- Fukuda + CCC and selected from the patients of some of our top docs, who know what they're doing when it comes to diagnosis.

I'm pleased that they have banked samples from this cohort for further study. No researcher should have to select their own (lousy) patient cohort when good samples of a well-defined cohort are available.
 

urbantravels

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An example of his political skill was the way he dodged the question from Hillary about XMRV and prostate cancer and why there has been no big rush to retract and re-examine that work. But he promised to talk about it in private with her.
Well, now we know why he handled it that way. Those studies were being retracted a few hours after the press conference.