MSers bite back

ProfG said "More bad news for those of you who want their reading material to filtered and passed through rose-tinted glasses."



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. 

So if delivering a drug to MS is a criteria for success to make one a big boy then most of the academic World shrinks and excludes essentially all the scientists,who can't do clinical trials, However, members of the Team can hold their head up in this respect. 

Should we ask you to name the BigBoys, surely there are a few Girls in there e.g. Ruth Arnon?


Or is it having members of the team that have identified treatments that have become drugs? So members of the team can hold their head up....but in reality No single academic has moved a drug from invention to people with MS yet. Will they ever?

Until something big is delivered you are the Aston Villa of MS research teams.


Which way should we respond to this, maybe this Way?

No disrespect to our chums from Birmingham (Home of Aston Villa Football Club) but do you have to insult us by calling us Aston Villa...at least pick a team we support (e.g. Leeds United...they are not even in the Premiership:-) .....we receive enough insults already:-). 

You also recently said


"Your....posts......are pointless (like much of Team G's research). 
You have been out of control since Prof G went on his walkabout. 

Ask yourself why do I read them?



"You haven't got long before the big man reappears from his extra long holiday. I'm sure his last words before he left were something on the lines of 'when I get back I hope you've done some bl**dy good work'. I'm guessing he's going to be disappointed. The day before he returns you'll need to buy some bin liners to clean out the lab (200 beer cans and six months of mouse droppings)". 

Thing is......ProfG has not been away during his sabbatical,  I bet he wish he had.


When you feel the urge....... try resist it, cos I can't:-)


P.S. Thanks for the support from our Friends in Maidenhead.



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