Hi
Jonathan Edwards, thanks for all your thoughtful posts in this thread, your patience and skills as a Professor are definitely showing.
I have a few questions. As you can probably see, many people here have tended to jump in the deep end with trying to see how autoimmunity could be associated with ME, however we tend to have a few gaps in our knowledge due to lack of directed study.
So my first question is, what would you suggest to be the most straightforward way for people like me to learn more about the latest views on autoimmunity and aspects that may be relevant to ME?
My second question is what is in a name? Whenever I ask people (including scientists) who are unfamiliar with CFS (as it is known over here) why they think there is a lack of research, one of the first things they usually mention is the name and they suggest that it trivialises the condition and makes others less interested in tackling it. Both CFS and ME are unfortunate historical accidents that we seem to be stuck with due to a lack of leadership within the field to change the name. The thing is, that other diseases have slightly inappropriate names, Lupus for example, but others are named after the individuals who first characterised the condition, which at the very least seems more tasteful. The latter may be much more appropriate when the aetiology is not well understood and other names (like ME or CFS) mischaracterise the condition.
What were your first impressions of the names CFS and ME? Do you believe they should be changed and what sort of name should we push towards?
Getting everyone in the community to agree on a particular name would be another matter, however many in the community are calling for this at the moment.
My third question is more technical. There have been a number of studies attempting to detect antibodies in fluid samples from CFS patients, however the panels used have been very limited. There have been some findings that have been replicated by four or more independent research groups (eg a strong association with antiphospholipid antibodies). The meaning of this is not at all clear and may well be a coincidence or a secondary consequence of immunological events. What is interesting is that anti-CRP autoantibodies have also been found in those with anti-phospholipid syndrome (interfering with the idea of CRP as a marker for inflammation). Perhaps the picture in ME or CFS is similarly complex?
Disappointingly however, there has not yet been a study using comprehensive autoantibody profiling techniques. I guess the main limitations are knowing what to profile for, since there are thousands of options and the difficulty in gaining funding, since the idea of CFS as an autoimmune condition goes well against the established dogma and were unlikely to gain funding until there was a shift in perspective.
I'm not aware of any groups explicitly doing this right now (Columbia University perhaps? someone can correct me if I am wrong), do you think this is an idea worth floating in the research community? I'm also curious (because it's a tricky question) about what kind of heuristic could be used to select potential targets in such a study.
