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.
Is it right to blame the MS Society and the Scientists? And to take out your frustrations on the biennial “MS Life” meeting?
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
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.
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.
Is this not an indication that something is bound to emerge, in the near future, to treat progressive MS?
If I had progressive MS I would look at all of this activity as being positive; we need optimism not cynicism.