How important are poll results? Or should we shred them? #MSBlog #MSResearch
Comments left on the poll:
- We need to realise that MS is a bad disease.
- “Shredding sounds rather violent! I agree that it could spur people into action in terms of changing the way MS is regarded, and the need to prescribe DMDs etc.
- The action of MS is more insidious, can’t think of a good word at the moment and am pressed for time, but I’m sure there is an appropriate word out there…”
- Dissolve?
- Please use whatever language you need to wake up the giant!
- Degeneration is a better description, Prof G.
- Why do you continue to come up with such derogatory “labelling” terms? dementing, now shredding.
- My brain is shredded. You couldn’t think outside the box. I got no treatment an was made to feel a fool. Mine and my family’s life has been ruined. I will forgive but never forget!!
- Shredder OR shredding appear to be irreversible processes when apllied to paper- is it this the same of brain tissues? If not I would find a better term.
“Although some of the comments suggest shredding is a polarising word the poll suggests using an emotive term such as shredding is okay if it achieves its aim.”
“It is our intention to shock. We need regulators, commissioners, payers and therapeutic nihilists to acknowledge that MS is a bad disease if it is not treated early and actively. Things could be very different if we adopted a more aggressive approach to managing MS. I know not all of you will agree with this approach, but all we are doing is laying out the arguments for this approach or treatment philosophy.”
“As a balance to this campaign over the next few weeks and months I will be focusing on benign MS and predicting benign disease. Leaving the costs of treatment and economic arguments aside, benign MS is the most commonly used counter argument to early effective or aggressive treatment, treat-2-target and NEDA (no evidence of disease activity).”
“Do you have benign MS? If yes, how do you know?”
It took 20 years from my first CIS for me to be diagnosed, in that time I lost sight in my one eye twice with ON, I had several epileptic seizures, I had problems with depression, with my walking, with my bowels and stomach, lots of problems with my eyesight, what I know now as the MS Hug, and finally when I woke up one morning unable to walk it took 5 months for my neuro to tell me I had 'Benign MS'. I paid privately to ask him questions about this and he reluctantly told me that I may have had RRMS for most of that time! I was a working Professional with a PhD, so not stupid, but as MS was never mentioned to me directly I never researched it! How, many others are told their problems are psychological and denied treatment in this way! So not so benign eh? Use any terms you like if it gets action.
Nope I'd never say benign as the MS is active, but in 25 years, it has been mild. No edss, I work full-time in a quite stressful career involving a lot of international long haul travel and do quite a few media interviews (so no verbal memory problems etc). It has been sensory-visual since the beginning, but I relapse once a year -without fail. OK, quick recovery, and on the whole I can continue working through the relapse, I've rarely taken steroids (only if my eyes are affected). Occasional fatigue, rarely lasts more than a day or two. So on the surface you could say benign but I wouldn't chance it. I'd like to take an effective DMT but guess what I don't qualify! I've just had a relapse, which always triggers me to see what research is going on with MS. This blog is depressing and terrifying. I'd like to see stats on how many people with MS get dementia, although I'm sure it is more than a handful, I'd think it is less than cognitive impairment and that covers a wide spectrum from mild upwards. Either way, it is still bad news, and something I don't want to risk but it seems that I don't have much choice as far as NICE and a lot of conservative 'wait and see' neurologists are concerned.
Agree with above. Use any phase you need if it gets those holding the purse strings to listen.