Who are the progressive MS Killjoys out there? Do you have a name? #ThinkHand #SpreadHope #ClinicSpeak
“To all the Killjoys and cynics out there, who said ‘progressive MS is not modifiable‘? Can I ask you all to please read, or re-read, my post on ‘the theory of progressive MS‘. We now know how to do trials in progressive MS and more will follow. The ocrelizumab and siponimod results are just the beginning of many more positive trials to come. At Barts-MS we are so optimistic that we are already planning trials that are targeting upper limb function in MSers who have lost lower limb function. Our whole #ThinkHand campaign is based on the premise that progressive MS is modifiable.”
“To all the Killjoys and cynics out there, who said ‘progressive MS is not modifiable‘? Can I ask you all to please read, or re-read, my post on ‘the theory of progressive MS‘. We now know how to do trials in progressive MS and more will follow. The ocrelizumab and siponimod results are just the beginning of many more positive trials to come. At Barts-MS we are so optimistic that we are already planning trials that are targeting upper limb function in MSers who have lost lower limb function. Our whole #ThinkHand campaign is based on the premise that progressive MS is modifiable.”
“Can we please SPREAD HOPE rather negativity?”
CoI: multiple, I am a steering committee member on both the Ocrelizumab-PPMS and Siponimod-SPMS trials.
This is helpful becuase it is hopeful!
Prof G, I admire your positivity, but there is also a need for a reality check. You said yourself that siponimod is unlikely to be available for 3 months. 2.5 years is a long time if you'very transitioned to SPMS. Perhaps you guys see stuff in the lab and can be more hopeful. Perhaps ectrims 2016 will announce some big breakthroughs. My reality is the annual 7 min neuro appointment where I am told "we have nothing to offer people with SPMS". So I'm not a cynic or killjoy just sharing my real life experience. If there are neuros who are dishing out treatments to modify progressive MS please post their details so I can contact them.
"My reality is the annual 7 min neuro appointment where I am told "we have nothing to offer people with SPMS". "Same here…if Lemtrada and Tysabri are of any use..have to believe the drug companies would have figured a way to makemoney with them. read the comments at bottom of link alot ofpeople have huge losses and aren't doing well.https://multiplesclerosisnewstoday.com/2014/09/01/new-multiple-sclerosis-drug-may-repair-nerve-demyelination/
Hope is essential, but the wheels of medicine move so slowly compared to the disease. Hence unless there are some big stories in a lab somewhere the breakthroughs are still pretty tame – its not like the car is stopped or even slowing down, more like its not accelerating so fast.
"Who are the progressive MS Killjoys out there? Do you have a name?"I have a name, but I'm not going to write it in this forum. I also don't see the point in making one up.I have had PPMS for many years, and there is no good drug with a good safety profile available for that right now. Nor do I see anything on the horizon as yet. I live in reality, not in a fantasy world following dangling carrots.I concentrate on good diet and good general health, and I'm not doing so bad. False hope and drugs that a) don't work very well and b) have nasty/fatal side effects down the line don't interest me.
And when I asked my neuro at my last appointment if there was anything on the way for PPMS, his reply was a long, drawn out "noooooooooo" accompanied by a slow shake of the head. To be a killjoy, logically speaking, requires some joy to kill.
Why the request to spread hope instead of negativity? Why not ask people with MS to say how they actually feel about this? Asking to spread hope rather than negativity to me seems like asking people to feel what you think they should feel rather than what they are. I personally think it's ironic Ocrelizumab is being heralded as a game changer, considering Rituximab has been available for a very long time now. Time being brain and all, the whole field is a mess. It's natural that people are disheartened.
Bozo you have forgotten that spread hope is an acronym. You need to read the post:http://multiple-sclerosis-research.blogspot.com/2016/08/thinkhand-spreading-hope.html
hahahah thanks for the link. me speaking blind. makes more sense now.
To Anonymous who can't be bothered to think up another name. Why don't you call yourself Anonymous1, so we can distinguish you from all the other people posting anonymously on this site? It would make it easier to understand what's happening when several people comment anonymously on the same post.
No. Maybe I'll go by Brain Blessed another time (if there is one). The connotations of possibly being someone male, loud, hairy and dramatic are mildly amusing at least.
I can't help but feel that there is a certain painful irony, though, that you upload this just one post before a post that says the Biotin trial is… well… pretty underwhelming.