Lipkin Study Press Conference 18th Sept

[ukxmrv]

It would Chris, but it came about through the serendipitous finding of CFS in a cancer patient being cured in Norway.

It didn't come about through research or someone trying a treatment on a patient to see what would happen.

 

[alex3619]

"Our study provides a paradigm for pathogen dediscovery that may be helpful to others working in this field." This quote is from the paper. Hopefully future pathogens will have prompt and effective validations studies. Bye, Alex

 

[ukxmrv]

Host response leds us back into the tender hands of the psychiatric brigade. At least in the UK.

They claim that their methods can change the host response

We're back also to why does the host respond that way (i.e. different to "normal" people) and all the unresolved childhood trauma

 

[Marg]

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 (not genetic) are the main causative agents in this.

I agree, our bodies have to detox 300 (last I read probably more now) a day then they are equiped to do. We are surrounded with poison and stress of life. I think the viruses we do have come out of latency becasue our immune systems go down with all the attacks on it. Think Of Gulf War Syndoe and 9/11... a lot of sick people from those two things. The food is terrible, read the long list of chemicals..well the ones that are published on items. The GM0 are not even listed.

Interesting I became very sick after the flu shot 93, had a remission but it came back. I had a lot of vaccines for living in Europe for 5 years and later allergy shots. I think my immune system was confused with all that. I will never have another. Reas www.mercola.com today about vaccines.

 

[leela]

Let's remember too that Simarron has been hinting widely for some time now that there is something big afoot.
I imagine they were waiting for the Lipkin et al study to makes its waves before taking their place in the spotlight.

I've hear a couple of different times implications that they are about to come out with something big.

Also, eventually Montoya's gene expression and pathogen study will come out too. I imagine some really interesting info will come out with that, as they are being *really* thorough, testing samples three times, and a bunch of other good stuff.

Reasons to be hopeful!

 

[Sasha]

Host response leds us back into the tender hands of the psychiatric brigade. At least in the UK.

They claim that their methods can change the host response

We're back also to why does the host respond that way (i.e. different to "normal" people) and all the unresolved childhood trauma

Argh, I hope not. Surely a well-demonstrated, consistent host response in a well-defined cohort would put us firmly in the hands of immunologists? If psychiatrists want every disorder where there's a screwed-up host response, they're going to have to fight immunologists for them. MS doesn't have an identifiable aetiological agent at present (that I'm aware of) but they do have a consistent host response (at least at the level of demyelination, if that counts) and they're in the hands of immunologists. I think that once we've got a consistent picture, we're in a much stronger position to fend off psychiatry. I think the tide's already turning and the UK can't remain isolated for long if other countries are following an immunological model.

 

[leela]

I think that once we've got a consistent picture, we're in a much stronger position to fend off psychiatry.

Lipkin put a very firm damper on the psychological POV in his address today.
For me, that was one of the biggest wins of the day.
The celebrated Ian Lipkin telling the psych lobby to basically shove off, there's nothing for you to see here.

 

[Seven7]

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.

 

[Andrew]

Here's what I got.

1. The only purpose of the study was to see if the Mikovitz and Alter/Lo findings could be replicated. It was not to explore new ground.

2. The conclusion was that the original Mikovits and Alter/Lo studies were underpowered and this led to incorrect conclusions. This new study demonstrates that, and all participants (including Mikovits) agree.

3. Because of the publicity of the original Science study, more good scientists have become involved, and are staying involved.

4. The focus is changing away from finding a single infectious cause, but instead entertaining the possiblitiy that this could be caused by more than on infectious agent, and that immune problems keep the body from dealing with it.

5. Lipkin made a very strong point. Government funding can be influenced by noise made by the public and he thinks that now is a time when it's important for us to do this. He also acknowledged how difficult this is for chronically ill people to do, but he urges us to do what we can.

I have one nagging question, though. And I'm not faulting the study in saying this. I think their design had a specific goal, and it accomplished it. But my question remains. In the monkey experiments the monkeys' immune systems were able to clear their blood of XMRV. But after receiving a peptide injection (presumably to simulate an invasion by infectious agents), the XMRV reappeared in the blood. What I don't remember is what they found in regard to antibodies. Still, this does suggest that one entertain the possibility that an infectious agent can be present, but not in the blood.

 

[Simon]

Lipkin: This is not a psychosomatic disorder

I'm going through the video at the moment. I could watch Lipkin all day, the man is a class act both as a scientist and as an all-round smart operator. Better stop gushing now.

This struck me as interesting, @ 25' in the Press Conference video. Apologies if it has been posted already.

Commenting about his first foray into CFS research, he talked about a Japanese studies in the 1990s that said 50% of CFS cases in Japan were due to Borna Disease Virus (which Lipkin co-discovered). Lipkin and co. looked but couldn't find any link between CFS and the virus, but at today's press conference he said about that work:

The one thing that did impress me was that there was an enormous amount of immunoreactivity that appeared to be non-specific in these individuals, so that at a time when people were saying this was a psychosomatic disorder I said "two thirds to three quarters of all the people we have tested have polyclonal B cells - they are sick. We don't know why, but they're sick"

 

[Simon]

Here's what I got.

...
I have one nagging question, though. And I'm not faulting the study in saying this. I think their design had a specific goal, and it accomplished it. But my question remains. In the monkey experiments the monkeys' immune systems were able to clear their blood of XMRV. But after receiving a peptide injection (presumably to simulate an invasion by infectious agents), the XMRV reappeared in the blood. What I don't remember is what they found in regard to antibodies. Still, this does suggest that one entertain the possibility that an infectious agent can be present, but not in the blood.

Good summary, Andrew. I've only watched half the video but wanted to comment on what i saw that addresses some of your nagging question:

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. Finally, Lipkin added they he was involved in separate work that was looking both for more pathogens (in blood) as well as indirect evidence of infection (presumably through blood samples). The latter would presumably be highly likely to pick up signs of an infection that wasn't itself present at any level in blood. No idea when the results of this are due.

 

[lilpink]

Apols if this has been asked before, but has anyone a link to a manuscript for the Press Conference yet please? needed soon as

 

[ixchelkali]

Host response leds us back into the tender hands of the psychiatric brigade. At least in the UK.

They claim that their methods can change the host response

We're back also to why does the host respond that way (i.e. different to "normal" people) and all the unresolved childhood trauma

That may be the twist that the psych lobby want to put on it, but you can't exclude research into host response because of that. Autoimmune diseases, cancers, immunological diseases are all examples of diseases of host response. Some serious diseases caused by pathogens only cause serious illness in a subset of those who are infected (e.g., polio, rheumatic fever, hemorrhagic fever); these are host response diseases. You can't just not look at host response.

 

[ixchelkali]

Here's what I got.

1. The only purpose of the study was to see if the Mikovitz and Alter/Lo findings could be replicated. It was not to explore new ground.

2. The conclusion was that the original Mikovits and Alter/Lo studies were underpowered and this led to incorrect conclusions. This new study demonstrates that, and all participants (including Mikovits) agree.

3. Because of the publicity of the original Science study, more good scientists have become involved, and are staying involved.

4. The focus is changing away from finding a single infectious cause, but instead entertaining the possiblitiy that this could be caused by more than on infectious agent, and that immune problems keep the body from dealing with it.

5. Lipkin made a very strong point. Government funding can be influenced by noise made by the public and he thinks that now is a time when it's important for us to do this. He also acknowledged how difficult this is for chronically ill people to do, but he urges us to do what we can.

Good summary, Andrew. I also liked that Ian Lipkin talked about all the reasons to be optomistic about the way biomedical research is moving forward, and that the well-defined patient samples they collected for this study will be available for future research.

Also, the importance of well-designed replication studies. That was, after all, what the patient community was clamouring for in regard to XMRV.

 

[ixchelkali]

I have a question about the deep sequencing that Ian Lipkin says they will be doing in the CFI-sponsored study he's working on. What will they be deep sequencing? Every pathogen they find in the blood? The genomes of the patients?

I think I'm missing something obvious here.

 

[Kate_UK]

The one thing that did impress me was that there was an enormous amount of immunoreactivity that appeared to be non-specific in these individuals, so that at a time when people were saying this was a psychosomatic disorder I said "two thirds to three quarters of all the people we have tested have polyclonal B cells - they are sick. We don't know why, but they're sick"

Rituximab gets rid of the B-cells, is that right?

I searched for polyclonal B-cell activation and found this,

some reports suggest a deleterious role for polyclonal activation, arguing that it could potentially turn on anti-self-responses and lead to autoimmune manifestations during chronic infections.

 

[Simon]

I have a question about the deep sequencing that Ian Lipkin says they will be doing in the CFI-sponsored study he's working on. What will they be deep sequencing? Every pathogen they find in the blood? The genomes of the patients?

It's not obvious, and actually it's a bit of both. As I understand it, they sequence everything in the blood, human or otherwise. I think in practice they have ways to hook out most of the human DNA first, which cuts out of a lot of the work, and then look at what's left. Much will be known viruses, bacteria, protozoans etc. But, if I remember a previous talk by Lipkin correctly, even more will be unknown viruses etc, where they can tell from the gene structure it's a virus or whatever, but it doesn't match any known virus.

These unknown viruses etc will generally be present in much smaller quantities than common ones, which is why they are unknown (also, because many of them are impossible to culture in the lab, but deep sequencing doesn't rely on culturing).

Hope this helps rather than confuses.

 

[Sasha]

It's not obvious, and actually it's a bit of both. As I understand it, they sequence everything in the blood, human or otherwise. I think in practice they have ways to hook out most of the human DNA first, which cuts out of a lot of the work, and then look at what's left. Much will be known viruses, bacteria, protozoans etc. But, if I remember a previous talk by Lipkin correctly, even more will be unknown viruses etc, where they can tell from the gene structure it's a virus or whatever, but it doesn't match any known virus.

These unknown viruses etc will generally be present in much smaller quantities than common ones, which is why they are unknown (also, because many of them are impossible to culture in the lab, but deep sequencing doesn't rely on culturing).

Hope this helps rather than confuses.

I think he also said they were looking at RNA, which shows (I think) how each patient's genome is operating - I think it shows whether our bodies are doing weird stuff, basically (spot the non-bioscientist).

Hope someone will correct me if I'm talking rubbish...

 

[Simon]

Host response leds us back into the tender hands of the psychiatric brigade. At least in the UK.

They claim that their methods can change the host response

We're back also to why does the host respond that way (i.e. different to "normal" people) and all the unresolved childhood trauma

Lipkin talked a lot about abnormal host responses, and said some very interesting things. He pointed out how well established it was in humans - but how most of the research on abnormal host response has been done on animals, mostly mammals. I know it's been found in reptiles too.

Can't say I've seen anything on claims that psychological therapies can effect host responses. In humans, or newts.

 

[Simon]

I think he also said they were looking at RNA, which shows (I think) how each patient's genome is operating - I think it shows whether our bodies are doing weird stuff, basically (spot the non-bioscientist).

Hope someone will correct me if I'm talking rubbish...

You're right, he did say (or Mady Hornig, perhaps) they were going to look at RNA to see how the genome is operating.