A few weeks back one of the readers posted this comment: "Sick of conferences like MS Life. It's pure spin on the scientists' part. Firstly, how about you introduce truly efficacious therapies for progressive MS and then you'll have a real reason to throw an overhyped banquet in Manchester." Anonymous, Multiple Sclerosis Research: Lifestyle Meeting : MS Life 2012, 14 Mar 2012
It is easy to diss this comment as coming from a cynical MSer. On the other hand there is real frustration about the lack of a real advance in the treatment of progressive disease that underlies this comment.
It is easy to diss this comment as coming from a cynical MSer. On the other hand there is real frustration about the lack of a real advance in the treatment of progressive disease that underlies this comment.
Progressive MSers find all the hype around early-relapsing disease and talk of MS prevention depressing and frustrating.
Is it right to blame the MS Society and the Scientists? And to take out your frustrations on the biennial "MS Life" meeting?
Is it right to blame the MS Society and the Scientists? And to take out your frustrations on the biennial "MS Life" meeting?
Does the role The MS Society plays in progressive MS a useful one?
There is little doubt that MS is a bad disease:
This diatribe of bad news is based on data and a world view that has emerged prior to the introduction of DMTs, in particular the newer generation DMTs with greater efficacy.
There is little doubt that MS is a bad disease:
- MS reduces lifespan by ~10 years on average
- 50% of MSers are unemployed 8 to 10 years after diagnosis
- Divorce or separation rates are double the population average
- Society views the quality of life of an MSer with an EDSS of 8 or 9 as being worse than death
- Suicide rates in MSers are 4x the national average
- The cost to society of someone with an EDSS of 6 or greater is over £50,000 per year
- Given time the majority of MSers will become disabled
................. and the list could go on.
This diatribe of bad news is based on data and a world view that has emerged prior to the introduction of DMTs, in particular the newer generation DMTs with greater efficacy.
I am positive that once aggressive early treatment becomes the norm, we will delay, slow-down the course of, and possibly prevent progressive MS. Great, but were does that leave people with progressive MS at present?
At "MS Life" I will highlight the research activity that is occurring in progressive MS. For example a search on www.clinicaltrials.gov using the search term "progressive multiple sclerosis" resulted in 106 hits.
http://clinicaltrials.gov/ct2/results?term=progressive+multiple+sclerosis
Is this not an indication that something is bound to emerge, in the near future, to treat progressive MS?
At "MS Life" I will highlight the research activity that is occurring in progressive MS. For example a search on www.clinicaltrials.gov using the search term "progressive multiple sclerosis" resulted in 106 hits.
http://clinicaltrials.gov/ct2/results?term=progressive+multiple+sclerosis
Is this not an indication that something is bound to emerge, in the near future, to treat progressive MS?
In support of The MS Society and MS Life: a large number of the initiatives into finding an effective treatment for progressive MS have been led by funding from the MS Societies. A few examples are, the Lamotrigine SPMS trial, the MRI add-on component to the CUPID study, the PROMISE 2010 programme, the UK clinical trial network, which has the specific task of designing and starting a neuroprotective trial in progressive MS. There are other projects on the table waiting funding decisions to tackle the problem of doing trials in progressive MS. Finally, there are a several industry-sponsored trials that are either fully recruited, currently recruiting, or are about to start recruiting participants for progressive MS studies.
Is this not good news?
If I had progressive MS I would look at all of this activity as being positive; we need optimism not cynicism.
If I had progressive MS I would look at all of this activity as being positive; we need optimism not cynicism.
If you are free on the 14th and 15th of April I suggest you attend the MS Life meeting to hear about it for your-self.
For those would need financial help getting there the MS Society is offering travel grants.
Finally, I would appreciate it if you could respond to the new surveys on the right? I would like to use the results to illustrate a point in my talk.
Thank you.