Daisymay
Senior Member
- Messages
- 754
http://www.meactionuk.org.uk/Data-or-Dogma.htm
Data or Dogma?
Margaret Williams 16th August 2014
Data or Dogma?
Margaret Williams 16th August 2014
A significant paper on the nature of ME/CFS was recently published: it concluded: “These data are consistent with evidence of multisystem dysregulation in CFS and implicate the involvement of DNA modifications in CFS pathology” (de Vega WC, Vernon SC, McGowan PO. DNA Methylation Modifications Associated with Chronic Fatigue Syndrome. PLoS ONE 9(8):e104757. doi:10.1371/journal.pone.0104757; published 11th August 2014, volume 9, Issue 8).
The accompanying press release states that the researchers found evidence of distinct epigenetic profiles in immune and other physiologically relevant genes, explaining that epigenetic modifications affect the way genes are turned on or off without changing the inherited gene sequences: “These types of changes would be expected to affect immune cell function in ME/CFS patients….it is further demonstration of the indisputable biological basis of ME/CFS” (Solve ME/CFS Initiative: Breaking News: Chemical Changes in Immune Cell DNA from ME/CFS Patients).
Immediately apparent is the significant discrepancy between this evidence and the selectively published results of the PACE trial, as the cohort was essentially the same age group as PACE participants (in this study, ME/CFS patients’ age averaged 41.1 years and controls averaged 39.7 years, compared with the average age of 38 years in the PACE trial).
Comparison of the physical function scores of this study with the PACE trial is illuminating: in this study, the mean physical function score for patients was 38.9 but for the healthy age-and-sex matched controls it was 95.0. The standard error of the mean (similar to a standard deviation) was 1.5, giving a normal range of greater than 93.5.
In contrast, the PACE trial Investigators did not use healthy age-and-sex matched controls and decreed that a physical function score of 60 or higher represented the normal range (which meant that it was possible for a PACE participant to enter the trial with a physical function score of 65, then deteriorate physically over the course of the trial, yet still be reported as having “recovered” with CBT and GET).