Not surprising this has come back to bite and so the interests of balance, you can have your say. ProfG may try and select words that won't get your goat.
You said:
"Prof G, I think you miss the point. What gifts offered up by MS would you like? Incontinence, cognitive dysfunction, ED, mobility problems, loss of you job, divorce.... With your white lab coat on and dealing with this disease at the population level, you can trot out the ever growing list of grim effects of this disease. At the individual level it's very difficult to come to terms with - almost impossible.
I appreciate that what is being said is unpleasant but should we ignore this? ProfG has taken the opinion not to withhold this information and as we say "the good and bad news" and as such you say lets "Shoot the Messenger". Maybe different words could have been used
I'm not after a rose-tinted view of the disease, but some hope for the future that I'm not going to end up in a care home wearing a nappy and being fed through a peg. Your blog has been helpful to boil down the best route to slow this disease i.e. Take a wad of chemo early on (although even this is a 20 year experiment)".
Glad the message has got through , however I think there is hope been spread, however we appreciate things are not fast enough.
We have been consistently frank about the process and the time it takes. We did not create the system. You, not me, need to lobby to change things if you don't like them.
Rather than stop..No.
Well, well well...out comes the usual reposte....put blame the failures of the Research community to find something to deal with progressive MS, firmly on our shoulders.
This is frankly rather tiresome.
"I also think that you are looking at the achievements of Team G through rose tinted glasses. We have this blog and you and your team have worked on trials for pharma, but I haven't seen any work that has benefited me personally".
How do you know? You don't know everything we do or everything we are doing...but I guess you have PPMS/SPMS and there are no treatments yet available, so I accept the frustration.
Experimentally we have already demonstrated a number that could work.
However, I am not aware of any current treatment, including Alemtuzumab, that has not been dependent on Pharma for its delivery. I am sure ProfG is proud of his involvement in helping deliver treatments to people with RRMS, including those to come.
"I like you work in a job which requires good evidence to support findings / results. I don't see any evidence that Team G, for all the effort, is delivering".
We have been through his already and this is like a stuck record, CD or MP3 dependent on your age.
No doubt I will be told that I should watch this space... Perhaps Team G will deliver in 2015 - charcot project, something on the neuroprotection side, the anti-CD19 drug.
Yep maybe, watch this space!
Team G really needs its own Alemtuzumab if it wants to be up their with the big boys.