Science asks authors to retract XMRV/CFS paper

[Jemal]

I can only echo Eric: I have seen several patients of KDM report on Dutch forums that they had stomach biopsies that were found positive for XMRV.

 

[Bob]

No, but i could try to look for one. I know that Dr. De Meirleir is analyzing (i guess at RedLabs) stomach biopsies from at least some of his patients. I have personally met one of these patients.

I can only echo Eric: I have seen several patients of KDM report on Dutch forums that they had stomach biopsies that were found positive for XMRV.

OK, thanks eric and Jemal.

That sounds very interesting.

Do you know if there any preliminary results at all?

 

[Jemal]

Do you know if there any preliminary results at all?

Not published, that I know of.

 

[Daffodil]

i couldnt read all the above posts..but since more than 1 lab has now found MLV-related viruses instead of XMRV in particular, doesn't it seem more likely that these are the cause of CFS?

KDM has found XMRV in tissue but does that mean anything? if he is using the materials or methods (or whatever) from VIP/Redlab, won't they make the same contamination arguments for his results too?

 

[Bob]

i couldnt read all the above posts..but since more than 1 lab has now found MLV-related viruses instead of XMRV in particular, doesn't it seem more likely that these are the cause of CFS?

Yes, that's how it seems to me Daffodil. The research should be investigating XMRV and PMRV, or as Judy calls them, HGRV's. Judy has now detected PMRVs in her patients.

KDM has found XMRV in tissue but does that mean anything? if he is using the materials or methods (or whatever) from VIP/Redlab, won't they make the same contamination arguments for his results too?

If KDM has sent his samples to VipDX 'blinded', and has got back convincing results with a significant difference between patients and controls, then that does help move the research forwards, but it won't convince everyone.

 

[justinreilly]

Of course I agree with critically examine and not blindly follow but is that something achievable by people who see themselves as fighting for their lives ? At the very least such an attitude suggest a likely preference for ready answers rather than the posing of fundamental questions. To suggest that XMRV wasnt latched onto with undue expectations is denying what has to be obvious to anyone who has read the M.E/CFS forums in the last two years. That wanting XMRV to pan out is understandable, but the group attitude has been unhealthy and unrealistic and has not involved a general critical appraisal of all the available science. My suggestion is that now is the time to learn from the XMRV saga, and for those involved in the forums to start a more considered approach to science because the odds are against XMRV being a single answer, and M.E/CFS affected people are going to need positive engagement with a broad range of medical science for many years to come.

Of course another ten, twenty, thirty years without effective treatment would be really crap and at that range some of us will never enjoy the benefits of research, but given that there may well be a genetic element to M.E/CFS, we should IMO not focus just on our individual 'fights to survive' but on what the long term propects are for our, children, grand children, nephews, nieces etc. Saving the world from an XMRV plague had a great ring to it, but even if what we are stuck with is plain boring old M.E that's been around for forever, we can at least 'achieve' a quiet personal herosim by being part of the reasoned deconstruction of the elements of a confusing illness.

IVI

I'd like to get saved from the ME plague whatever it is caused by. and it is a plague. saying 'plain old boring ME that's been around forever' is like saying we have 'plain old boring AIDS or Autism that's been around forever.'

 

[justinreilly]

Not really... There is also Alter and Lo... And now there is Hanson, De Meirlier, and Beiger.

The virus might have an afinity to certain tissue types, and might replicate easily in these tissues, even if it is quickly cleared from the blood.

I think that most ME patients are happy to watch XMRV research run its course.
Things only get heated when we perceive that certain establishment figures are trying to shut down the research for no valid scientific reason.

I agree totally.