Lipkin Study Press Conference 18th Sept

currer

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I am impressed that Dr Lipkin praised Dr Mikovits and defended her from questioning that could be construed as criticism.
Dr Lipkin made a very favourable impression on me.

I can understand him suggesting that we lobby for proper research funding but as a patient group we have had so little power.
 

Sasha

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Well, I thought that was great - he was very clear that it's a genuine illness, that research is powering on, that more stuff is in the pipeline. Lots of quotable stuff there to lob at the psych lobby, if we get stupid press coverage in the next few days. He makes them look utter fools.

My video feed started buffering and missed a bit where he was at first talking about (I think) not just looking at agents but at host response and then he was talking about doing clinical trials (it was after Hilary asked about GcMAF). Did anyone catch that? Did he say anything about specific therapeutic agents?
 

Sasha

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I am impressed that Dr Lipkin praised Dr Mikovits and defended her from questioning that could be construed as criticism.
Yes, that was extremely well handled by both of them. Good for them. It's not easy to admit you're wrong, and it's not easy to deal tactfully with someone in that position.
 
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I think the cold comfort part is that we are waiting and waiting... and waiting. I agree, it is warming in some ways. but, during my own health crisis I would like to at least be able to try some novel (but expensive and geographically unattainable) treatments, ritux or amp. anything.
 

user9876

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I missed quite a bit at the begining of the press conference but I was very impressed by Dr Lipkin.

The things I would take away are:
1) We have often complained about poor methodologies but a lot of thought had been put into the scientific process and getting a good set of samples that control for many factors. These form a good basis for future research and samples are available to other researchers.
2) Lipkin clearly believes there is something up with the immune system although others were saying not a single viral agent but more of an interaction. He made a comment about b-cell activations (I didn't quite follow so can't remember the words) showing there was clearly an immune problem. I think be also briefly critisied the psychosomatic model by saying it is clear something is wrong in the immune system.
3) More research will happen (assuming funding) to explore the different immune markers etc in the blood.

More than anything I did get a positive feel that they think research will get somewhere. One of the others made a comment about how much our understanding of the immune system has grown in his lifetime (or 35 years of working) and Lipkin commented on how much understanding had grown in the last 5 years.
 

ukxmrv

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There wasn't anything there that could lead in the medium term to a treatment or a cure.

Lipkin and Alter sounded as if their minds were made up that a cause (i.e. new pathogen) would not be found

It's back to the host response theory and that hasn't lead to any treatments so far
 

Sasha

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I think the cold comfort part is that we are waiting and waiting... and waiting. I agree, it is warming in some ways. but, during my own health crisis I would like to at least be able to try some novel (but expensive and geographically unattainable) treatments, ritux or amp. anything.
Yup, can't argue with that! :)
 

Sasha

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getting a good set of samples that control for many factors. These form a good basis for future research and samples are available to other researchers.
I agree, the formation of that particular biobank is a massive asset.
 

currer

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This disorder belongs firmly in the province of immunologists in my opinion.

I think something is priming the immune system to behave abnormally. And I think that environmental factors (with genetic factors only secondary) are the main causative agents in this.
 

Sasha

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There wasn't anything there that could lead in the medium term to a treatment or a cure.

Lipkin and Alter sounded as if their minds were made up that a cause (i.e. new pathogen) would not be found

It's back to the host response theory and that hasn't lead to any treatments so far
I wonder if the research on the host response theory so far has had the statistical power, technological abilities and potential for subgrouping that Lipkin's research will have (I don't know, I honestly wonder).

I think I remember Dr Klimas saying somewhere that although people say the NK findings have been all over the place, that's not the case for larger, well-powered studies.

Even establishing definitively that this a host-response issue and not all in our heads would be a game-changer in how we are treated.
 

Christopher

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There wasn't anything there that could lead in the medium term to a treatment or a cure.

Lipkin and Alter sounded as if their minds were made up that a cause (i.e. new pathogen) would not be found

It's back to the host response theory and that hasn't lead to any treatments so far
Wouldn't ritux be considered a treatment for host response?
 

ukxmrv

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It depends if the patient selection was good enough. My alarms went off when Lipkin was discussing selecting patients with a possible infectious cause and he spoke about taking those with night sweats and weight loss. I'm an original ME patient with an acute onset, viral symptoms still and I wouldn't meet that criteria.

Hopefully the complete paper will include that criteria. If it doesn't and patients were selected through a further criteria that he was actually explaining then we could have a big problem.

We need to know if the patients in that biobank are the right ones.