Sunday, 15 February 2015

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.



21 comments:

  1. The attitude displayed by some of the commenters on here really does boggle the mind. I'm impressed that you even respond to many of them! Suggest you recognise the trolls for what they are.

    This blog (and the work of the whole team) is of tremendous value and I will happily buy you all a beverage of your choosing should the opportunity arise.

    ReplyDelete
    Replies
    1. "Suggest you recognise the trolls for what they are"

      Yes ProfG agrees, and I do, but I can't resist. I just like remind myself every now and again that I'm not a wet-blanket who rolls over when provoked. With a corporate webs site run by committee you just wouldn't get this..we are people just like you.

      ProfG wishes I didn't, I'll get a slap on the wrist for this when he comes back from his sabbatical, then I'll explain and I am will get a rye smile:-)

      However, these comments are "all handbags at five paces".....a duel with handbags which is nothing compared to swords and pistols if you want me to explain. However, what is more concerning are the few malicious people who take their trolling outside this blog Yes you know who you are, may be we do too:-). What Way should we respond to them?

      Delete
    2. I completely agree. We MSers turn out to be a shockingly cranky and irrational group of folks... must be all the shriveled and damaged brains.

      You all at Barts do an amazing job of updating us on the research. When I was first diagnosed, I learned more from this site than every other resource combined, and it helped me figure out how I wanted to treat this disease and what to expect. Sticking our heads in the sand isn't going to stop the destruction of this disease. If these folks want a baby bottle and a pat on the back, they should go to one of the million sites that cater to that and leave the real discussion of this horrible disease to the adult table.

      Also, you might want to find an alternative to the current commenting system. These trolls cause you a lot of angst, Mouse Doctor, and so maybe you should consider outsourcing the comment moderation, forcing people to use registered accounts, or just turning off comments all together. I really enjoy the interactivity with you all, but I'm worried about causing you brain atrophy, MD.

      BTW - I did have quite the laugh at this post, especially the 200 beer cans and 6 months of mouse droppings! At least MS hasn't killed our creativity.

      Delete
    3. Re "You all at Barts do an amazing job of updating us on the research. When I was first diagnosed, I learned more from this site than every other resource combined, and it helped me figure out how I wanted to treat this disease and what to expect. Sticking our heads in the sand isn't going to stop the destruction of this disease. If these folks want a baby bottle and a pat on the back, they should go to one of the million sites that cater to that and leave the real discussion of this horrible disease to the adult table"

      I could not agree more. I keep an eye on some other sites, but there are none so comprehensive as this blog for keeping me up to date, or for making me really think about my potential options.

      Re "find an alternative to the current commenting system" etc
      NO - what ever you do, do not turn off comments altogether - I just ignore the trolls and grumpies - although I can understand some of the sentiments expressed by the grumpies, I sympathise with Prof G and the MDs et al when their efforts are being knocked (can you apply for some free cast-off flak jackets from your local constabulary?) And some of the comments are as important in contributing to an overall understanding as the actual posts.

      Delete
  2. Mouse, thanks for taking the time to respond to the various comments. When I read them cold I think they're pretty harsh. But I can also appreciate some of the frustration. You have to live with this disease to really understand the losses and fear. I like the honesty of this blog, but also get scared when the picture of the shrivelled brain kept appearing. I also get frustrated when it looks as if there might be treatments to protect our nerves, but the we are told they will never be available as they are out of patent and nobody will fund the trials. I'm guessing 95% of those who visit the blog would want to say many thanks for all your work. The other 5% - they are venting the frustration of living with a chronic progressive disease. You provide them with an outlet - I wouldn't take their comments too personally. Aston Villa are now in the relegation zone so this was rather harsh.

    ReplyDelete
    Replies
    1. Agree completely. Also anything that doesn't involve face to face, or even voice, communication, leaves out important elements essential to good communication. Unfortunately without this it is very easy to have different perceptions as to what someone is writing or how the reader will receive/interpret, this is one of the perils of social media. It is still relatively new and it will take time for individuals to learn how best to use it, and to remember what they are saying may not be received in the same way. As to trolls, yep this is the unfortunate reality again and one has to develop a thick skin, delete or ignore. However having read some comments that have been interpreted as trolling, I'm not convinced they were. Overall this blog and individuals behind it are doing a fantastic job; working all sorts of unsociable hours to provide the information and research that people with MS need and value (regardless of how horrible that information may be). No idea about football so can't comment on how heinous this comment was :).

      Delete
    2. Yes it is never possible to gauge the context, is someone being tongue in cheek?,or a miserable little toad?

      Likewise, few get my sense of humour, it depends on the psyche and our national characteristics, I have a Dutch friend who hates it how the English skirt round matters and sit on fences, where he can be blunt and seemingly offensive, when he is not intending to be offensive.

      Delete
  3. I appreciate this site. I have PPMS and have heard it a all so I am cynical. I get a little panicky when I see information on my atrophied brain…….. So, I feel it is frustration in these comments not trolls. Please continue to keep us informed with the good, the bad and the ugly.

    ReplyDelete
  4. Agreed, you do a great job and any sensible person knows that getting results from research takes aeons - but we know you are trying your best. I'd say just ignore the trolls, they really aren't worth it, but admirable that you reply. Best wishes as always

    ReplyDelete
  5. This sort of stuff is what puts me right off this blog, this whole website. No, not fear of real, scientific information, but rather the atmosphere engendered by the commentaries AND the responses - the attitudes on display. They bring to mind people who are tired and who have been drinking too much coffee.

    ReplyDelete
  6. Yes I agree- your responses are always with attitude, making me lose a bit of respect for you. i suggest just not responding

    ReplyDelete
  7. Keep in mind those trollers that have taken atracks outside of this blog are a minority. Unfortunately this type of minority has always been the most vocol throughout history but is not the what the majority of MSer feel. Try not to let them get the best of you.

    ReplyDelete
    Replies
    1. Sorry if anyone gets aerated by some of our more forthright responses. it depends what sort of mood we're in when the negative/insulting comments pop up. It's tiresome to be told nothing you do is of any value when you're busting a gut trying to do as much as humanly possible for MSers, given the straitened times resource wise.
      It's good for our blood-pressure to respond in kind occasionally and it's safe to say we have some really great research coming down the pipe that will stick two fingers up to the negative crowd ;-)

      Delete
    2. md2 let your work do the talking. i've met you and md, great blokes- so it's not nice to see you insulting patients etc on here

      Delete
  8. MD2 I wanna hug you. Can I hug you?

    ReplyDelete
  9. It does surprise, and deeply disappoint me, that brilliant scientists feel the need - and have the time - to get down and dirty with negative blogging and what, at the end of the day, amounts to mudslinging. Rise above it for goodness sake! Surely that's not difficult when you have confidence in the great work you are doing. You surely don't need to beat down frustrated people with MS / aggressive bloggers to "feel the power". Crikey.

    ReplyDelete
    Replies
    1. Sometimes they just catch us at a bad time. We're only human too, despite what some seem to think.

      Delete
    2. Being a punching bag isn't in my job description last time I checked ;-)

      Delete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.