Lipkin Study Press Conference 18th Sept

urbantravels

urbantravels

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SOC said:
:) What puzzles me most is why they would bother with a press conference at all. Do they still think there's a gigantic crowd of patients hanging hopes on XMRV and who will need to be "talked down"? o_O Or do they actually have something new and significant to announce? I guess we'll find out soon.
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I really hope they do have SOMEthing new and significant to announce, because a massive debunking party would be just too depressing to live through. The need for debunking at this point is really not significant, and "debunking" of any theory about ME/CFS causation usually feeds into a larger "debunking" narrative about the disease itself.
 
C

currer

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I think they have found something.

Why? Because this is the first time historically speaking that there has ever been a comparable microbiological effort to investigate a well characterised group of ME sufferers.
How could they not find abnormalities? And significant ones? We are so sick.

Like all oppressed groups we partially believe the propaganda against ourselves. Social pressure can never be totally resisted.

The FDA has changed its tune on this disease too, so I reckon something significant has come up.
http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm
 
U

user9876

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currer said:
I think they have found something.

Why? Because this is the first time historically speaking that there has ever been a comparable microbiological effort to investigate a well characterised group of ME sufferers.
How could they not find abnormalities? And significant ones? We are so sick.

Like all oppressed groups we partially believe the propaganda against ourselves. Social pressure can never be totally resisted.

The FDA has changed its tune on this disease too, so I reckon something significant has come up.
http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm
Click to expand...

I'm assuming they must have found something to make a press conference worth while. Although I think it may only be a small clue.I don't think a we didn't find XMRV is much of a story for the press since they have already run this.

I was wondering about the FDA changing its attitude, my first thought was because Obama was asking questions.
 
biophile

biophile

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I wanted to avoid speculation, but my earlier guess was that the results will be definitely negative for classic XMRV (no surprise there), and probably an overall negative for HGRV in ME/CFS, but something interesting has still been found, perhaps an important clue to the issue of contamination or even a (retroviral) lead for a small minority of patients. If the results are generally negative, there may still be an emphasis on the progress of other projects currently underway or in planning. We will know soon anyway.

I think the existence of a press conference is no indicator of the nature of the results, and would exist regardless when considering the profile of this study and how the people involved seem to be fully aware that the ME/CFS community wants to be adequately informed about the results. Although it has been said that no single study can be "definitive", the reality is that the results of this study will heavily determine future funding and investigation in this particular area. I have no problem with people combing over the results to find flaws, but I will move on and continue to focus on other areas of the literature if there is no evidence found for a retrovirus in ME/CFS.

However, for the first time I feel a slight sense of cautious optimism in the horizon for ME/CFS. Obviously the situation is still appalling and events are unravelling too slowly, but it does seem that our situation is showing signs of gradually changing for the better. In the last few years there have been a boost of interest from reputable scientists and there are multiple interesting studies underway. The PACE Trial has further exposed the barely concealed failures of the cognitive behavioural model for ME/CFS and helped to shift the focus of the MRC in the UK towards a more biomedical approach after years of stubbornness. There will be resistance from biopsychosocialists but sooner or later our time will come.
 
C

currer

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I mostly agree with you bilophile, but remember it was the rituximab research (not the failure and poverty of the concepts underlying PACE) that provoked the MRC into asking for biomedical research proposals.
We know that ME has an autoimmune/immune component. We need to know why.
 
biophile

biophile

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The 1st and 2nd calls from the MRC in the UK, for biomedical research proposals, were both announced about one week or so before publication of PACE Trial results (which would have already been known about for months behind the scenes). Coincidence? The important findings on Rituximab were published several months after the first PACE paper, but probably still helped the 2nd call from the MRC UK.

[edit: there would have multiple factors behind the call for biomedical research proposals, including campaigning]
 
snowathlete

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It could just be a result of Obama getting involved - make a bigger show of research into the disease happening.
 
SOC

SOC

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currer said:
I think they have found something.

Why? Because this is the first time historically speaking that there has ever been a comparable microbiological effort to investigate a well characterised group of ME sufferers.
How could they not find abnormalities? And significant ones? We are so sick.

Like all oppressed groups we partially believe the propaganda against ourselves. Social pressure can never be totally resisted.

The FDA has changed its tune on this disease too, so I reckon something significant has come up.
http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm
Click to expand...

You make a good point. I'm expecting more from the broader pathogen study, though. I think it's quite possible that this study won't find evidence of a retrovirus, but it seems highly likely that the broader pathogen study will turn up a number of pathogens.
 
C

currer

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Your'e right. I was not taking into account the extreme focus of the Lipkin study onto XMRV/MLVs only. But I hoped some further information might be revealed, nonetheless.
 
S

Sasha

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Oh! Actually there's a couple of guys sitting there at the table now and it says the thing will start at 10:30am (i.e. in 7 minutes) - I had thought it was 11am.
 
justy

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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'
 
W

waiting

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justy said:
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'
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Yes, I thought this was odd. I think he said it was too delicate a subject for the press conference...?
 
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