Discussion of the IOM report in relation to timing of the Lipkin cytokine study


Senior Member
England (south coast)
Quoted from another thread...
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.
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.


Contaminated Cell Line 'RustyJ'
Mackay, Aust
You are right Bob. I have been mixing up P2P with IOM. I still stand by my thoughts on whether or not the IOM should have included Lipkins study.


Senior Member
We have been hearing (in public) bits and pieces about the study results for close to a year.

The IOM committee included two of the Hornig/Lipkin study authors (Klimas and Bateman). Given that unpublished results from the CDC multi-site study were made available to the IOM committee (meaning that unpublished material was allowed, I assume that Klimas and Bateman would have discussed the results of the Hornig/Lipkin study during their meetings.
Why that material was not included in the IOM review I do not know.

For the AHRQ evidence review for P2P there was the opportunity to submit unpublished material for the review. Public notice was given and advocates and others submitted material in July 2014.
I do not know if material from this study was submitted for the evidence review.

For P2P Hornig gave a presentation at the P2P meeting and discussed some of these findings.