I'm attending the ECTRIMS conference in Amsterdam (aka the 5th Joint Triennial Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis) from October 19th to 22nd. I will be bringing you interesting research tidbits from the conference, both here and on the website of the National Multiple Sclerosis Society (I will provide links to those blogs here throughout the week).
In terms of MS research and treatment, this is the big time, folks. At latest count, there are over 7,000 scientists and doctors attending this conference. All of them are looking at some aspect of MS or closely related diseases.
It's all here - clinical trial results, stem cell research, MS risk factors, physical therapy approaches, mouse model immunologic research, molecular aspects of MS, updates on the latest in disease-modifying drugs in the pipeline.
However, it is a strange feeling to read some of the abstracts that try to present "MS patients" in a scientific manner, discussing our emotions, behaviors and challenges from an objective viewpoint. To those of us living with the disease, there is much about MS that is not clear-cut at all - we are living it, we feel it deeply, we don't know how we will feel mentally, emotionally or physically from day to day. It's hard to imagine that researchers could accurately pinpoint some of these things for us as a group. I look forward to hearing specifics, believe me.
Right now, everybody can view the abstracts for most of the presentations by going to Scientific Programme, opening up a day and browsing the topics or by searching a specific topic of interest (later, you will be able to view the actual posters and presentations). Clicking on the title of the presentation will take you to the abstract. I think everyone should go on to the site and take a look. It is overwhelming, but fascinating.
So, let me hear from you. Is there a particular topic that you would like to hear more about? Do you see anything that is particularly exciting? Let me hear from you in the comment section below.
Check out my National MS Society blog on this conference - ECTRIMS 2011: Bringing the MS Research World Together or watch the video, Welcome to ECTRIMS: Day 1.
Thank you for bringing this to our attention. As a person diagnosed with Primary Progressive MS, I would certainly welcome any new information with regard to PPMS. We often seem to be left out of the discussion!
Hi Julie….thanks for your efforts….we live in India and my wife is sufferring from secondary progressive MS…..would be really great if you can try to get more information about the research in the traetment of tremors, ataxia and bladder control.
Julie:
As someone whose wife has seen immediate, dramatic and lasting improvements of her MS symptoms one year post CCSVI treatment, we’d like to hear any ECTRIMS reports on CCSVI. Thanks.
Hi!
I am so greatful and happy that your wife had the liberation procedure done and she feels wonderful!
My daugther is been dignosed almost 3 years ago with MS, she is not taking any medical treatment only naturopathic one,she is doing execellent and i hope in the near future the cure will be found! They should stop the greed of making money on people’s health conditions,is billions of dollars industry, if they find the cure so soon how they can make money then? I hope and pray for everybody’s health!
Keep well and all the best!
Hi Carmen
Good to know that your daughter is doing excellent after receiving naturopathic treatment. Could you please tell me what exactly is this treatment and how does it help in MS?
Regards
Ajay
Hi Julie,
I look forward to your blog posts! I am curious if they are presenting any new findings on Tysabri and patients that are at higher risk to develop PML because they are antibody-positive.
Thanks, Laura
Hi, I would introduce myself as Taran Sarna 4rm INDIA, new Delhi…I m suffering 4rm RRMS…nd recently started wd injection therapy glatimer acetate….but I m again very eager to know more about updates 4rm…you..thankyou
I too was hoping that there would be a lot more CAM discussion as I was following your low dose Naltrexone blog closely. I would like to hear more on pain associated with MS and treatment strategies for this. I’m tired of hearing MS doesn’t hurt…. It can and does-frequently!
I would like to know if you have a problem traveling overseas and taking your medications through customs?
Kudos to you for doing this. Flying and attending conferences overseas are a challenge when you are totally healthy. Take care of yourself!
Tovaxin – I haven’t heard anything recently about this on the MS sites, but it appears the company is getting some pretty good financial backing.
Julie,
I’m very intested in learning more about
EAP (2-amino ethinol phosphate) Supplementaion Therapy for MS. Through info/articles from my neorologist I read of this EAP Thereapy and that the EAP component is present in lower than average levels throughout the the body, including mylen cells, in MS patients. “Ca-EAP (calcium-EAP) was registered in 1965 by the German Federal Health Authority as effective anti-MS medication and is use with positive results at the Hachen Sanitarium, worlds largest MS hospital. However, Ca-EAP has been banned by the FDA in the US for unknown reasons…..documented results are very positive….” Article original publication: 01 Jan 2000, reviewed by Stanley J. Swierzewski, III MD, last modified: 03 Jun 2011.
I’ve had relapsing-remitting MS for 28 years. My history of M.S. Treatments: originally holistic (at least what I knew over 20 years ago), Avonex 10 years ago for 2 years, currently Gluten Free diet and healthy eating. Am anxious to get a better handle on my MS and feel drawn to a EAP therapy supplemtation. I feel MS effecting me cognativley now. Through excercise I’ve kept mobility (with a bad sense-of-balance thich I choose to laugh about).
I’m anxious to learn if the show you are at has any info on this EAP MS Therapy. Good Luck!
Thank you,
Laura
Julie–thanks for exploring and sharing. Your insight is so valuable!
Joy
Thanks so much for your postings on this invaluable conference. I’m sush a sponge for MS research information and I appreciate your blogs. Betsy Mencarelli
THANK YOU. THANK YOU. Julie
As exciting as this is for you it has got to be a challenge as well. Stay well.
I am interested in hearing about
Oct 19
European Charcot Foundation Bowel and brain (Satellite Symposium)
Oct 20
1) Cellular infiltration into the brain: new ways for immunomodulation in MS
2) Functional reorganisation and rehabilitation
3) Natural course 1–Analysis of disease severity and progression in a sample of 4,267 U.S. patients with multiple sclerosis
4)Repairing mechanisms 1
Oct 21
The importance of B-cells in MS
Vitamin D receptor expression within the central nervous system is affected by pathology of multiple sclerosis
Really interested in the OCT and MS on Thursday from 10:30 to 12:00.
So you’re actually in Amsterdam? I’m so envious!
I go to two neurolgists for RR MS. Neither one is intersted in my trying the oral drug, Gilenya. One says that his patients, who have tried it have had adverse reactions. I’d like to know what others have heard. If they are on Gilenya what is their experience. I take daily injections of Copaxone. I would certainly like to take a pill instead.
Thanks
Don
I would like to take Gilenya, the oral treatment, and my neurologist is VERy insistent on this new treatment, I’m really tired of the daily injections with Copaxone, which has truly worked well for me, but I’ve been on it for 12 years, and the injections are getting tiresome and painful. But I am waiting for more people to be on the oral drug and see the results, what have you heard about it?/ experiences u’ve heard/seen?
Is stem cell treatment for Multiple Sclerosis available in the U.S?
Hi Julie,
You are an inspiration and we salute you for keeping all of us updated with your findings as well as your personal feelings and impact.
My wife was diagnosed 3 years ago and was taking Copaxone. Although I cannot truly understand what she’s going through physically and mentally (not easy to walk in ones shoe unless the shoe fits) I try to be the best support system. As such, I gave her the needle on a daily basis and helped her cope with the pain and mental anguish.
We recently switched over to Gilenya as it’s much easier for her to swallow a pill then to take the needle.
I can say that while she was on Copaxone, she never had a cold/flu. Since we changed to Gilenya, she’s caught her first cold/flu.
We would like to know what results/findings/comments are being addressed relating to Gilenya.
Thanks, keep strong and keep doing what you’re doing. You are making a difference.
Andre
Why So Little CAM at ECTRIMS 2011?
Alternative Treatments – ignored because it doesn’t cost the patient $2000 a month,
My cousin on my father’s side died of ALS in his 30’s.
My cousin on my mother’s side has a daughter with MS.
My son has MS.
My niece-in-law (not blood related) just died of the well known side effects of Tysabri.
I’m 76 so not likely to get MS. Our statistics are out of sight and there are other sons, daughters, grandson, nephews who could well be carrying MS susceptibility.
There is certainly a lot of hope in Dr. Roy Swank’s very well documented life style treatment with patients living 30 and 40 and 50 years beyond being diagnosed with MS.
Our son is following “Overcoming MS” by Dr. Jelinek, an MS survivor himself. The book is a thorough explanation of causes, treatments, and current medications vs. life style changes.
Now some people refuse to change life style no matter what – look at the prevalence of smokers, drug users, alcoholics and obesity. Others of us are quite willing to follow healthy life styles which we have to find out about ourselves.
As Dr. Jelinek points out, the life style for MS is very nearly the same for avoiding heart disease, cancer, diabetes, … Nature is telling us something if we would only listen!
He also points out that the medical establishment has little interest in these proven life style changes that work for decades, instead concentrating on highly profitable
medications with possibly severe side effects tested for maybe only a couple years.
Another enlightening source is “The China Study” by world renowned Cornell prof. T. Colin Campbell. He describes strong resistance in the medical community to “prevention”.
My point is a well informed patient can choose – and the doctors should give all the choices including life style first off to new patients, or even those with statistical risk.
Jerry. I agree with what you said. I have MS, and work in the medical field. MDs want to prescribe and do surgery, that is all most know. You are so right we have to find out ourselves what the best coarse is to take. I belive it is a vegan lifestyle low in fat and sugar, and gluten if you have a problem with it. I watched 2 documentaries that changed my life. Forks over Knives and Milk got the facts. I am currently involved in a year long study through Oregon Health Science University. The study is Vegan diet and MS. Funded by John Mcdougall. I am so excited to be part of this study, And this will validate the many years of research of the late great Roy Swank.
I have to admit it is not easy eating and living this lifestyle, but the pay off is so rewarding to feel good and look good, I have Ms but it does not have Me!
Until the actual cause is defined, all treatments are just an attempt to manage the symptoms.
Hi Julie–
I’d like to hear more about the disease’s impact on gray matter, or really anything that deals with the degenerative aspect of the disease.
Thanks!
Sadie
My husband and I really need to know what’s going on with PPMS. He was diagnosed 4 years ago, at the same time he was diagnosed with Hodgkins Lymphone and Lyme Disease! Is there anybody working on PPMS treatment?
Lynn –
I am always looking, and it isn’t that there aren’t any, it’s just that they are generally looking to see whether any RRMS drugs will do something with PPMS.
I was in a drug trial at UPenn for rituximab for PPMS a few years ago. I recall that it wasn’t considered effective. I’m trying to remember what my doc said, but I do remember that the results were sex-linked, men having some response and women, none. I don’t think that the male response was considered statistically strong.
Unfortunately, I don’t think there are enough of us with PPMS to be an attractive marketing opportunity for the drug companies.
Lynne, I don’t know what symptoms your husband has, but I do know that ampyra has helped some people with their walking. I took it for a few months, and it did help my legs feel stronger. I stopped for three reasons: 1. I way overdid things because I felt so much stronger and would tank later. 2. I felt that I didn’t walk any better, still slow as molasses. 3. It disrupted my sleep.
And at the price I had to pay, it wasn’t worth it.
I too am interested in PPMS and have looked high and low in the conference schedule for articles looking at something other than symptom management (although I always appreciate new ideas in that area).
If, as has been posited, that PPMS has a different disease mechanism than RRMS, then why do we continue to see drug trials for PPMS generally tending to be follow-ons for RRMS drugs. These have consistently proved to be ineffectual.
Is there any researchers out there actually interested in PPMS?
I like all you say Julie, keep it up for us all. I have PPMS and it’s getting worse each week, so last week I decided to go to the Neuro – Imaging Center in Buffalo NY and I went through a High Intensity Doppler Ultrasound procedure for CCSVI and while I appreciate this is a controversial issue I needed to find out if I fell within any of the 5 areas of implied concern. The results were most interesting in that I was shown to have a blood blockage in one the small veins in the back of my neck. It was only evident on the right side, the left side was flowing almost normally. So, I am very interested to hear the the response of tomorrows lecture on CCSVI at the ECTRIMS conference tomorrow morning