I was at a meeting on optic neuritis in central London yesterday (5th April 2012) and we got onto the usual discussion/debate about early aggressive treatment vs. watchful waiting so as not to expose too many MSers, destined for a benign course, to the risks of aggressive therapy. One of the issues that came up afterwards is that if you have a risky treatment that cures a significant proportion of MSers how will you know if it is the treatment or the natural history of the disease that has resulted in the apparent cure (prolonged disease-activity free status)?
I said this would be a nice problem to have. However, the current clinical trials should be mandated to follow-up study participants for a very long time to answer this question. In the interim it would, however, be ideal to be able to offer these aggressive therapies to MSers stating that we don’t know the long-term outcomes and let them take the risks themselves. Unfortunately, several of my colleagues remain uncomfortable with this strategy. We may therefore have to find a middle road; i.e. offering this option to MSers with very aggressive disease and keeping the treatment in reserve for those with less active disease. The problem I have with this is that our tools for monitoring MS don’t capture all the disease, in particular gray matter pathology, and that MSers can be come disabled waiting for their disease to become more active.
Does anyone know what we need to show to claim someone has been of cured of MS?
At an International CMSC meeting, on MS classification, in Short Hills, New Jersey, in 2010 the following definition was discussed:
“To claim that someone has been cured of MS one would have to show that the person who had the disease had no disease activity for at least 15 years. The latter would be a composite of no MRI activity (new gadolinium-enhancing lesions, new T2 or enlarging T2 lesions and a lack of progressive whole brain atrophy) and no clinical activity (relapses or disease progression).”
It is important to stress that this definition does not mean that established neurological deficits are reversed, but only that no new deficits occur.
As someone with MS I would say that the first step with regard to defining a cure is that the patient is disease free i.e. after treatment there are no new clinical or radiological signs of disease activity. My Campath 1H treatment has delivered this and I'm now c.2.5 years since my second infusion. The disease may re-activate in future, but I'm happy with my status at the moment (no relapses, no progression). If you are experiencing disabling relapses then a drug which shuts the disease down, at least for a few years, would be called a cure by patients in that position. For people with secondary or primary progressive MS, the definition of a cure is going to be halting further progression / disability. The ultimate cure is to permanently stop the disease in its tracks and reverse all exising deficits. Easy to define, but very difficult to deliver until (i) the cause is known and (ii) brain tissue repair is possible.
Re "Does anyone know what we need to show to claim someone has been of cured of MS?"No fatigue. If a patient can make it through the day with 4-5 hours sleep at night, then she/he is cured.
To me a cure will be reversing the damage done to the CNS of a disabled person with progressive MS.What you're outlining seems far too simplistic Prof G. Once again your focus is on those with early/ mild disease activity rather than those with established and active disease progression.You cannot claim to have a cure until you can cure everyone with MS.
A cure is whatever the MS community defines it to be. Halting progression and reversing damage are separate objectives. Once progression stops you can find ways to live with what you have and plan your life.I think the definition you've given is good except that 15 years is too short. The period chosen should be longer than the time in which a newly-diagnosed person can statistically expect to become disabled.@Vasilis: There was NO fatigue for more than two years after diagnosis. Used to wake up early in the morning and be up and about at once. But there was a lot of MRI activity. I don't consider that 'cured'.
Hello,I have SPMS, had it for far too long. If someone can stop it progressing any further then my family and myself would consider that to be a cure.A different problem is repairing the damage once the disease has been eliminated – that would be a different cure because the problem is different but can it happen? Cancer can be eliminated but is the damage repaired?The cure that we are all looking for is to design a drug that would eliminate MS so that no one ever suffered from it. Almost no one gets polio, umm now that would be fantastic.
Re: "No fatigue"Can I please remind you that fatigue is a normal physiological response; it is not necessarily abnormal. Everybody gets fatigued. It therefore can't be included in any definition of a cure.
It may be normal but there is something abnormal in the MS fatigue, otherwise we wouldn't be talking about it, nor would it be the most common MS symptom. Patients can understand whether their fatigue is justified but their activities or not, in the same way they understand when it is gone.It's time fatigue measurements replaced MRI activity, since the latter has proved itself unreliable too many times.
VV did you recently have an MRI that showed new lesions?
No Roshni. I last had an MRI 19 months ago. But i am relapse and fatigue free 13 months now.
VV, haven't you even read what anon 6th April said about fatigue? My son with early RRMS has bladder, balance and walking problems, but NO fatigue. Tell him he's cured!
Beverly, I sympathize for your son. What I mean is that once fatigue has settled, it can never go away on its own. Having no fatigue in the first place is something different, outside my definition of cure.
"What I mean is that once fatigue has settled, it can never go away on its own. "I figure you meant to say it only goes away after CCSVI.And that is NOT true.I have had RRMS for at least 12 years. Fatigue started about 7-8 years ago and more and more knocked me out, about 2-3 years ago my social life was more or less nonexistent because of it. I have been in a medical trial with a S1P1 rec. agonist for about 1,5 years now (similar Fingolimod) and after about half a year fatigue totally vanished. I had a few weeks problems last winter, now I am back to normal=like I was before fatigue started and like I was most of last year. And I mean normal! Most of my healthy friends are less active than I am.
Re "I figure you meant to say it only goes away after CCSVI."No, I meant to say that whatever makes fatigue go away is worth investigating.