Elizabeth Unger's talk at the recent 2014 Stanford ME/CFS Symposium on the epidemiology of this illness made it clear that ME/CFS is a major public health issue, expensive both to the economy in terms of lost labour (both domestic and in work settings), and in human distress. Her charts show that patients have disability ratings more severe than those with MS, cancer, chronic pelvic pain, lung disease. Interestingly, contrary to the widespread belief that ME/CFS has a psychiatric component, Unger's charts show that ME/CFS patients scores are relatively high on the two indicators of mental health. Many studies, and a long history of patient reports indicated that ME/CFS has an underlying pathology which makes exercise dangerous to them. All symptoms worsen, and many patients have been made permanently, severely ill after conscientious attempts to follow exercise programs. The PACE Trial purports to support treatment aimed at 1) persuading patients that they do not have a physical illness (CBT) and 2) that they will benefit from a program of graded exercise therapy similar to those employed in rehabilitation of patients after injury.
The information publicly available about this trial indicates a number of changes to the original protocol, including a decision not to use a physical measure of activity, and a change to the criteria for recovery from 85 to 60, when the criteria for being ill enough to enter the trial was 65. The results of this study are being described as evidence-based proof that patients will get better as a result of these two therapies, and are included in the NICE Guidelines for treatment of ME/CFS.
If this were a drug trial, it would be evident that patients need to be protected from the effects of treatment based on flawed research. If a drug company were reluctant to give public access to information about the physical state of patients who had been treated by their drug, a drug recommended for the treatment of a severe illness affecting large numbers of patients, such an enquiry would not be dismissed as 'vexatious'.
It is difficult to believe that if the information requested supported the conclusions which the researcher has reported, he would want it to be witheld.

In my annotation above, I referred to a presentation given by Elisabeth Unger. It occurred to me that not everyone will be aware of her credentials. This is a report from the U.S. Center for Disease Control, announcing her appointment, in December, 2013:

'Elizabeth (Beth) Unger, PhD, MD, has been selected to serve as the Chief of the Chronic Viral Diseases Branch (CVDB) in the Division of High-Consequence Pathogens and Pathology (DHCPP), National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), Centers for Disease Control and Prevention (CDC).

'Dr. Unger has served as the Acting Chief of CVDB since January 2010 and has 13 years of experience in CVDB, where she has participated in the design and implementation of CFS research and HPV laboratory diagnostics.

'During this time, she was co-author on 25 peer-reviewed manuscripts related to CFS, including the often-cited descriptions of the Wichita and Georgia population-based studies. In addition, Dr. Unger has been instrumental in efforts by WHO to establish an HPV LabNet and serves as lead of a WHO HPV Global Reference Laboratory.

'She is co-author of 142 peer-reviewed publications and 24 book chapters and serves on the editorial board of six scientific journals. In 2008, for her HPV research accomplishments, she received the Health and Human Services (HHS) Career Achievement Award.

'Dr. Unger received an undergraduate degree in Chemistry at Lebanon Valley College, Annville, PA. She then earned her PhD and MD in the Division of Biologic Sciences at the University of Chicago where she also began a residency in pathology. Her residency and fellowship was completed at Pennsylvania State University Medical Center. During this time, Dr. Unger developed a practical method of colorimetic in situ hybridization. This work led to interest in tissue localization of HPV and ultimately to her initial appointment to CDC in 1997 to pursue molecular pathology of HPV and CFS.'

It would seem obvious that her scientific and professional status indicates that information she provides should be taken very seriously indeed. No doubt Professor White is highly regarded in his field (psychiatry), but it is evident from the positioning of CFS alongside other viral research within Dr. Unger's remit that the U.S. CDC does not regard psychiatry as relevant to ME/CFS.