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.
7 thoughts on “Progressive MS & the MS Life meeting 14th-15th April 2012”
Gavin, there is something I must remind you of: There is, at present, ZERO, ZILCH, NADA in terms of DMTs for those with progressive MS. The checklist you’ve outlined above is a sobering reminder of just how callous a disease multiple sclerosis is, and how little there has been in the way of developing potent therapies that truly make a fundamental difference to the nature of progressive MS.Positivity is all well and good; however, life with progressive MS is an exercise in attrition―a disease in which basic faculties of movement and wellbeing are horrendously eroded with little in the way of efficacious medical intervention.There may be millions of progressive MS therapies in pharmaceutical and laboratory development, but nothing is yet filtering through to the market. There is also the added caveat of NICE withholding emerging medicine from patients on grounds of costs. Neurologists are more than happy to prescribe worrisome drugs like baclofen for spasticity over either sativex or fampridine.What this exemplifies is that progressive MSers have a huge fight on their hands. Primarily, they are fighting a pernicious disease that cannot be effectively treated. They are battling with the NHS to get hold of modern and expensive drugs that may improve their quality of life, but are largely deprived. Furthermore, MSers are now fighting a rightwing coalition government that is insensitive to their plight, forcing them through humiliating assessment criterions and often depriving them of essential disability benefits. Gavin, you are asking for optimism? Nay, I implore you to offer us MSers some understanding. Life with progressive MS is not a good one. Year in year out we are asked to hold on with baited breath and at the end of it we are given nothing. You may label me as a cynic but I am a realist.MS is a complex disease; granted. Having to live with MS is more complicated an affair than what you can ever envision. Trust me on this one.
Re: "Neurologists are more than happy to prescribe worrisome drugs like baclofen for spasticity over either sativex or fampridine."Unfortunately, until sativex and fampridine, are given the green light by NICE, which is unlikely in the near future, Commissioners will not agree to fund their use. It is not the neurologists not wanting to prescribe them, but the NHS that is not prepared to pay for them.
It's worrying when places like thw Walton Centre in Liverpool, which is a hospital designed to focus on neurology, refuse to prescribe fampridine due to the fact that it costs too much.I think it was only last week that Prof G argued that progressive MS is an NHS priority, yet the statement above kind of counters that claim. How can it be a priority when new drugs are being withheld because of costs?Baclofen was invented exactly 50 years ago now. It is still being prescribed despite of its very poor side effects. In all that time spasticity has been a prime ailment caused by progressive MS and yet the drugs offered remain severely outdated and nasty.Baclofen and Gabapentine are horrible drugs forced upon MSers. You are either given a choice of take it or leave it by neurologists. Sometimes I think it's better to wallow in pain and discomfort than to seek help from the NHS.Progressive MS is not an NHS priority, Prof G. I don't care how you try to say otherwise.
Shooting the messengers doesn't help! It isn't the fault of researchers and neurologists that there aren't treatments available, it is because of the complicated nature of the condition…
I don't think it's a case of shooting the messenger.It's more a situation of the messenger claiming that prog MS is an NHS priority when it is not because they are withholding certain drugs from Pw(prog)MS.The current system does not favour MSers. We need an Arab Spring in the MS world.
Dear Prof G,I wouldn't call it a diatribe of bad news, I would call it pretty close to the mark with the exception of the £50,000 cost to the MS soc.My wife was dx with ppms about 6yrs ago, the Neurologist was basically callous and couldn't understand why she got upset at the news. He said " it could be worse, you could have rrms and the uncertainty of waking up one morning with the loss of function". He said "you have a mild type of MS".I'm not sure how having the type of MS that offers no effectual treatment could be described as the better option.She now lives in constant pain, can no longer stand unaided, has bladder problems, lost all fine motor skills and looks very likely she will have to cease her career as a Teacher, which has already been cut to the bare minimum of hours.So I wouldn't agree with, as you call it, "diatribe" and until,your words again, " you start taking progressive MS seriously" you will not curry much support from us.Trying to sugar coat MS as a disease where you can still run marathons, go mountaineering, scuba diving etc, will continue to get up the collective noses of people with, or connected to progressive forms of MS.Last point, I'm not quite sure where the £50,000 is being spent in my wife's case, as access to any treatments to deal with her multitude of symptoms is woefully inadequate.I look forward to addressing some of my concerns tomorrow in Manchester. Regards Andy
David saidConciliatory proposal for neurologists I send on June 13th the following email to neurologists, to the Department of Science and Schooling in the Ministery of Health and to the MS Parliament Commission: Conciliatory proposal for a final solution of the MS problem I greet everybody! If some comments are necessary, please do so. The neurologists take death into account ignoring the saving trials of the human brain, which seeks alternative ways for the blood outflow from the brain. The oxygen-deprived blood outflows from the brain and the place is thus created for new, fresh, oxygen-rich and nourishing blood for the brain. This is the reason that an immediate improvement after treatment is noticeable. This is not a placebo effect….