It's a matter of trust.
The NIH knows patients are very wary of more patient blaming and findings that suggest that if people just stopped focusing on their symptoms and instead slept better, ate better, exercised more, they could be well. They know that much of the community has problems with a number of the NIH staff who have made statements along those lines.
So I really don't understand why they would put those distrusted NIH staff in direct contact with ME trial participants.
I have been examined by several doctors who, it turned out, don't believe there is a biomedical cause for ME/CFS. Without exception, they were poor listeners and did not accurately record what I was telling them. For example, recurrent constant cold sores since April was recorded as a single cold sore in April - leading the reader of the notes to assume I was making a big deal about things everyone experiences. When my abdomen was palpated and I said that it was sore in one spot, the doctor said 'that all seems fine' and wrote that the physical examination was unremarkable. Everything I said was filtered through their prejudices.
Furthermore, when it was clear to me, either by the person's reputation or their expressed attitude, that they viewed me as some inferior hypervigilant exaggerator, I was less forthcoming about my symptoms and probably came across as more withdrawn, more angry, more depressed, more anxious and less sociable than I would with a less judgemental person. I have a letter where it says that I 'had flat affect' when actually I was exhausted from the long time sitting in the waiting room and was politely containing my rage at the patronising attitude of the doctor.
I therefore think it is very likely that the quality of the data recorded during this NIH screening process will be affected by the choice of the NIH personnel.
And yes, I get that this is only a screening process, but I don't believe that data collected in the interviews will just be thrown in the bin once the participants are selected. Of course it will be used in subsequent analyses.
Remember that Walitt believes Shorter has something of so much value to say to the NIH that he arranged for him to travel from Canada to give a talk. I thought we were assured that Walitt would simply be organising the admin for this trial, ensuring patients got to the various data collection locations. Instead we find that he has a big part to play in interpreting and recording patient's symptoms.
Why on earth, if you were trying to run an investigation into ME that will be both useful and accepted as useful by the ME community, would you not choose staff for the face-to-face data collection who don't have a record of publicly denigrating ME patients?
