I'm back for the Q&A summary. Once again, I have to apologise. I'm so bad at this. I haven't noted down everything, just what was of particular interest to me. @
Leopardtail was to have been at the patient session as well as @
Jonathan Edwards, so hopefully any omissions and errors will be attended to.
Someone asked a question about definitions, referenced the CCC and noted that brain fog was a major problem for him rather than fatigue. (I think that in part this was provoked by so many of the panel having an interest in 'fatigue' and 'chronic fatigue' rather than 'chronic fatigue syndrome' or M.E.)
- Ian Lipkin was very quick to respond that it was really important to note that the patient group had more weight by sticking together. (In his own Panel Discussion presentation, he'd stressed the importance of different cohorts and that there were subsets in many diseases, eg cancer). Replying to the patient's question he used the phrase "lump but parse".
- Robert Dantzer, in response specifically to the fatigue element of the question acknowledged that yes, they were studying 'fatigue' but that fatigue was usually associated with other symptoms such as brain fog.
Another question led to a terminology discussion.
- Either Stephen Holgate or one of the panel pointed out that MS is likely to include as many as 30 different diseases but they are all referred to as Multiple Sclerosis.
A further question related to patient cohorts and severity of illness
- Stephen Holgate (whose background is in asthma) said that there were six distinct subsets of asthma and that severity is a false classification. All six groups include mild, moderate and severe.
- I think that it was the same question that led to a comment from Stuart Watson about stratification for research purposes. In the Newcastle studies, they've found that stratification has created differences in results, for example excluding patients with co-morbid psychiatric disorders, also jaw pain.
Sorry this is such a skewed report. In part, it's because making sense of a diverse patient group in research was my main theme for the conference and when I was making my notes, I wasn't expecting to have to relay so much of it here. But also, as I said in an earlier post, it's because it was genuinely the biggest topic at the conference and one which both patients and reseachers seem to have thoroughly embraced.