Hornig/Lipkin cytokine study out now - press release

[alex3619]

I have read some reports of higher rates of 'recovery' in the first 3-4 years.

The figure I keep running into is the first five years, with recovery higher in the first year, then tapering off to very close to zero by year six. I have no idea if this is right, but its been repeated by docs many times.

 

[alex3619]

It seems like a potentially significant result to me.

Its statistically significant. That does not mean there are not false positives. However some have very low p values, so low they should make the PACE researchers cringe because they can't do that well.

Also think that one chance in a googolplex (a very big number) is still a chance. Maybe White is betting on the outside chance.

 

[alex3619]

When we are thinking subpopulations that seems to me crucial because we might see bimodality straight off.

I love scatter plots not just for this, but anomalous outliers stand out strongly, and you can then think, ok, what is interesting about the outlier.

 

[Ecoclimber]

Anyone find it ironic that this study would never have happened if it weren't for XMRV. Or the further irony that it took private funding.

Since these findings were known then, why has it taken so long for this to get published?

Perhaps they were waiting for the conclusion of IOM study which for the first time designated ME/CFS as a disease clearly communicating the fact that ME/CFS is not a psychiatric, psychosomatic or psychogenic disorder. Furthermore, that the patient community throughout the years were marginalized, mistreated, ignored, abused and mistreated by those medical professionals whose duty was to protect and to treat them. Powerful special interests groups from the disability, medical and health insurance industries played an important part in keeping this under wraps throughout the years through their public relations efforts at media spin.

Speculating that Lipkin’s research was delayed to piggyback off the IOM report giving credence to the report by maximizing and supporting the conclusions of the IOM by stating that the cause for ME/CFS is clearly, biological.

Hopefully, this will give impetus for the NIH to finally fund research to investigate and find the cause in this incredibly debilitating disease. PaceTrial be damned.

 

[RustyJ]

Perhaps they were waiting for the conclusion of IOM study which for the first time designated ME/CFS as a disease clearly communicating the fact that ME/CFS is not a psychiatric, psychosomatic or psychogenic disorder. Furthermore, that the patient community throughout the years were marginalized, mistreated, ignored, abused and mistreated by those medical professionals whose duty was to protect and to treat them. Powerful special interests groups from the disability, medical and health insurance industries played an important part in keeping this under wraps throughout the years through their public relations efforts at media spin.

Speculating that Lipkin’s research was delayed to piggyback off the IOM report giving credence to the report by maximizing and supporting the conclusions of the IOM by stating that the cause for ME/CFS is clearly, biological.

Hopefully, this will give impetus for the NIH to finally fund research to investigate and find the cause in this incredibly debilitating disease. PaceTrial be damned.

I have an alternative view. The authors of the IOM report would certainly have known about this study and could easily have waited till it was published rather than push forward their own schedule. As far as I know they were briefed. It is pretty hard to ignore a study of 600 plus and it would have passed all their requirements (some might say that was the problem).

The IOM report spelled out clearly there was no physical evidence (this apparently was a major goal of the P2P, to establish that there was no evidence) yet chose to make the statement that the disease was real. This was a contradiction. Most professionals would see past the upbeat language and take note of the admission there was no evidence. And this was borne out in the criticisms by professionals. The clarion call that the disease was real had an obvious hollow tone.

No, my earlier comment was that, leaving aside the obvious discontent with the XMRV outcomes of the study from some quarters, including one of the principals of the study, why was this data ignored for so long. It was not why was it published now. Your explanation may be true for why it was published now, though I doubt it. In fact I would have thought they would have got more mileage by getting it into the report.

 

[Bob]

Discussions re the IOM report are off-topic.

Please can we not derail this thread with IOM discussions? (Let's have well-needed break from IOM in this thread?)

Please take IOM discussions to an appropriate thread:
http://forums.phoenixrising.me/index.php?forums/institute-of-medicine-iom-government-contract.114/

 

[RustyJ]

Discussions re the IOM report are off-topic.

Please can we not derail this thread with IOM discussions? (Let's have well-needed break from IOM in this thread?)

Please take IOM discussions to an appropriate thread:
http://forums.phoenixrising.me/index.php?forums/institute-of-medicine-iom-government-contract.114/

The responses re IOM are clearly talking about the impact of the timing of the release of this study. I see your comment as trying to filter out unwanted discussion. Lipkin himself has mentioned political obstruction in his me/cfs work.

It's important to gauge the government's response to this study, particularly for future funding. If it is that they are reluctant to accept this study then there will be no government funding for future or validating work.

 

[Bob]

The responses re IOM are clearly talking about the impact of the timing of the release of this study. I see your comment as trying to filter out unwanted discussion.

Yes, I'm trying to filter out unwanted discussion, from this thread only. I'm not a moderator, so it's just a request. Please could you start a new thread if you wish to continue to discuss the IOM? Otherwise, it will quickly spiral into a heated off-topic discussion.

 

[RustyJ]

Yes, I'm trying to filter out unwanted discussion. I'm not a moderator, so it's just a request. Please could you start a new thread if you wish to continue to discuss the IOM? Otherwise, it will quickly spiral into a heated off-topic discussion.

My response it then that posters limit their comments to those that are non inflammatory.

 

[Bob]

My mum just phoned me to tell me that her newspaper included an article about the research. I hadn't prompted her about the research, so she wasn't looking out for it. She's not familiar with all the scientific details re ME. But she told me that she is thrilled to see that they've finally demonstrated that ME isn't just "yuppie flu" or psychological in nature. Unfortunately Michael Sharpe was quoted in her newspaper, but she didn't take much notice of his comments. Anyway, my point is that the news seems to be cutting through into the general population.

 

[msf]

The only sense I can make of White and Co.s comments, apart from it just being a case of clutching at straws, is that using subsets (early vs late) increases the chance of statistical error purely because the study populations are smaller. Yet the sample sizes are still quite large, at least compared with almost any other ME CFS study, so it still seems like clutching at straws to me. It's not like they've produced massive of evidence to the contrary.

 

[Bob]

@RustyJ, it takes 5 seconds to start a new thread. Would you like me to start a new thread for you?

 

[msf]

masses, I meant

 

[Simon]

For cytokines that differed between short- and long-duration groups, levels were correlated with duration of illness, and in the expected direction: inverse correlations with duration of illness for cytokines that were increased in the short-duration group, and positive correlations for the two cytokines with reduced levels in the short-duration group (CD40L and PDGFBB) (table S7).

But I wasn't sure if that meant correlation by duration within each of the groups or whether it was across the groups.

Within all cases (see table S7 in supplement).

To translate the original statement into English they found that

• For those cytokines that were higher in the short duration group, the correlation mean that, on average, the longer someone is ill, the lower the level of the cytokine
• For cytokines that were lower in the short duration group, on average the longer someone is ill, the higher the level of cytokine

@user9876 I'm sure you realise this but I translated for my benefit, and others'

 

[Bob]

@RustyJ, I've created a new thread, and quoted your discussion:
http://forums.phoenixrising.me/inde...to-timing-of-the-lipkin-cytokine-study.35898/

I request that you continue IOM discussions there, please.

 

[A.B.]

The only sense I can make of White and Co.s comments, apart from it just being a case of clutching at straws, is that using subsets (early vs late) increases the chance of statistical error purely because the study populations are smaller. Yet the sample sizes are still quite large, at least compared with almost any other ME CFS study, so it still seems like clutching at straws to me. It's not like they've produced massive of evidence to the contrary.

This brand of psychobabble is all about appearance. It never made much sense. So we get statements like "the PACE trial paved the way for the IOM report" or comments about chance findings when the interferon-gamma abnormality is highly statistically significant, with a high odds ratio. It's about dominating the discussion with sheer quantity of bullshit that might look sensible on first glance.

 

[Antares in NYC]

Just wanted to point a minor detail about this study that caught my attention. The authors claimed there may be up to 4 million Americans suffering from this disease. That number is higher than the 2.5 million range mentioned by the IOM report.
I wonder what criteria they used to come up with the number, but I do believe it to be true. It does make me think there's an infectious trigger to this thing.

As a personal anecdote, just within my extended circle of friends I know of five people that have been diagnosed in recent years. I know more people that have been diagnosed with CFS or CFS/fibro than I know folks with MS or lupus.

 

[Bob]

As a personal anecdote, just within my extended circle of friend I know of five people that have been diagnosed in recent years. I know more people that have been diagnosed with CFS or CFS/fibro than I know folks with MS or lupus.

It always surprises me that almost everyone, who I speak to, seems to know someone else with ME.

 

[RustyJ]

I'd like to know if there is even one measure used on the PACE trial for which every single case was elevated compared with controls. I bet there isn't

Wouldn't even one be indicative of immune dysfunction?

 

[msf]

The statistical trend Simon mentioned seems to make White and co's remarks seem even more desperate. I don't see how this could reflect anything other than what the rearchers suggest, assuming that the age factor has been weeded out.