I am currently sitting in the lounge at Heathrow Airport. I am about to travel to the Cleveland Clinic, in Ohio, to attend a meeting on “Freedom from MS Disease Activity”; a subject that is very close to my heart. This concept is well advanced in the fields of oncology, rheumatology and infectious disease. We have to embrace this concept if we are to make a real difference to the lives of MSers; for example this concept is the starting point of a definition of what we consider a cure in MS.
For those of you who are interested the following is a draft programme of the meeting:
As you can I see I have to give a talk on the subject. My talk would be so much better if I could present some data on whether or not this concept has reached the clinics. I would therefore appreciate it if you could help by completing the following survey, which will take less than a minute, to see if if you have been exposed to the “disease-activity free ” concept in clinic. Please note that all surveys done via this blog are anonymous.
Thank you.
For those of you who are interested the following is a draft programme of the meeting:
As you can I see I have to give a talk on the subject. My talk would be so much better if I could present some data on whether or not this concept has reached the clinics. I would therefore appreciate it if you could help by completing the following survey, which will take less than a minute, to see if if you have been exposed to the “disease-activity free ” concept in clinic. Please note that all surveys done via this blog are anonymous.
Thank you.
Barbara M van Amerongen Thursday, September 20, 2012 9:53:00 AMDear Gavin,I love your blog.I love the information you share.I love your transparency.I love the opportunity you provide that enables me to mangage my MS myself and I think that is the only way forward.AND WITH ALL THIS EFFUSIVE PRAISE OF COURSE IT IS AN ADVERT, JUST AS MOST OF THE POSTS THAT CONTAINING ADVERTISING LINKS DO
MouseDoctor you are quite wrong.It is not about my website. You gave the option to fill in my URL, so don't complain. If you do not want my URL don't give the option.I do mean it:I do love this blog.I do love the information you are sharing.I love the transparency.I love the opportunity you provide that enables me to mangage my MS myself and I think that this is the only way forward.And I'm quite cross with you!Barbara
Dear BarbaraI am so so sorry, it is unusual to get praise without some alternative motive so I grovel and ask forgiveness.Hartelijk dank voor uw kinf woorden
In addition to sharing in the previous poster's compliments, I'd be really interested to see the paper you are giving on this – will you post your findings here? Have a good conference!
At last some ambition in the MS research community. And it's achievable with Alemtuzumab and Ocrelezumab (sp?). It needs courage to prescribe these sorts of super-effective treatments, rather than useless injectibles. You also need to achieve this objective for those with progressive disease.Good luck at the conference. Please report back. This sort of posting is what this blog shoudl be about. PS The polar icecap is melting fast and you must be responsible for a big chunk of this. My business uses video-conferencing. Although a big pluspoint for these conferences is the discussion which takes place in the fringes.
"At last some ambition in the MS research community"I think there has always been a lot of ambitions but much of it is below the icecap…the difference is Prof G tells you what he is up to.few others do until it comes to fruition or you are cruising for a bruising.However, progressive disease activity has been going on below that icecap I can assure you of that
Thanks so much for your transparency as usual, Prof. G. I really appreciate it. Hopefully the feed-back from this seminar will bring some more light to the target we all pursue, this "activity-free" MS
How do we truly monitor 'disease activity' free? One of my concerns is I can be on a 'first line' DMD, have no clinical activity and no MRI activity (at the 1.5T level anyway) and I can be on a more effective emerging DMD and the same lack of clinical activity and MRI changes. One would assume that those outcomes would be exactly the same but I have sneaky suspicion the former might only appear to be equally as effective on the surface but sub-clinical and sub-MRI 'more' is happening tending towards a greater likelihood of ultimate conversion to SPMS… I.e. 'disease activity free' on GA might not be the same as 'disease activity free' on Alem or BG12 etc, despite a lack of clinical signs or MRI activity on either. Does that make sense? Any thoughts?
Hi MouseDoctor.I give great value to this matter, I wish more people discussed it.I've just answered your quick survey, and on the last question, it would be necessary to have an answer like "I do know that I am not disease free", precisely because I had a relapse last year, and inflamation confirmed by MRI. An "infortunately" remark would be on point too!I also have a question: is brain atrofy measured and considered to calculate disease activity free?Best wishes to your presentation, and if by any chance there's a summary or some of the talks on video, please please share it.Keep up, it helps many of us to be kept up.Luisa Matias, Portugal
MRI is invaluable in seeing if there is disease activityThere are ways to measure brain atrophy by MRI and if your brain is shrinking then you would not think that you are disease free. However, some of the volume of the brain in MS is due to oedema = swelling and so if you do become disease free the swelling goes down and so the brain appears to shrink. The best MRI marker of shrinkage is under debate
Aren't all our brains shrinking all the time in adulthood? I thought it was just shrinking faster in MSers?
Yes, your are correct our brains start shrinking from our mid thirties.
Why is Benign MS not listed under Type of MS in the Disease Activity Free Survey?
Re: "Why is Benign MS not listed under Type of MS in the Disease Activity Free Survey?"Benign MS is not a type of MS; it refers to a clinical prognosis. Almost all people with benign MS have RRMS.
Re: "I also have a question: is brain atrofy measured and considered to calculate disease activity free?"No at the present time; we don't know to interpret it and it is part of normal ageing. After the age of 35 your brain shrinks a bit each year. It is all downhill for me!
Re: ". 'disease activity free' on GA might not be the same as 'disease activity free' on Alem or BG12 etc, despite a lack of clinical signs or MRI activity on either. Does that make sense? Any thoughts?"I agree; that is why DAF will be a work in progress and will change as we improve the metrics and are able to measure disease activity in for example the gray matter.
Re: "PS The polar icecap is melting fast and you must be responsible for a big chunk of this. My business uses video-conferencing. Although a big pluspoint for these conferences is the discussion which takes place in the fringes."Yes, this worries me as well. But TCs are not quite the same as face-to-face meetings and there are no domestic or local distractions. I also get a ton of work done on long flights and have time to think; a rare pleasure, which I used to do when running. Now that I am injured it is harder.