As I mentioned in my previous blog about the ECTRIMS conference, Julie Reporting From ECTRIMS 2011, pretty much every aspect of multiple sclerosis research is being covered at this conference. A closer look reveals that indeed there is lots of everything, but very little research on complementary and alternative medicine (CAM) approaches in MS.
Much to the frustration of many of us that are using or considering complementary and alternative medicine approaches to try to lessen the effects of our symptoms or even slow progression of our MS, there are many aspects of CAM that people with MS are using that we simply will not see represented here. There are no studies of the effects of low-dose naltrexone (LDN), dietary approaches to MS or acupuncture.
CAM is not entirely neglected, however - the offerings are just minimal.
There is at least one poster on biofeedback [P1052]. One group looked at "patterns of dietary and herbal supplement use by multiple sclerosis patients" [P557]. A couple of presentations offer data about the effects of physical activity on depression [P585] or self-efficacy [P1061], or discuss specific exercise programs for people with MS [P579, P580]. Two groups look at the effects of vitamin D supplementation [P454, P455]. That's about it, really.
For those of us who believe that certain CAM approaches do work, this list is pretty small. Why is that? I'll tell you - scientists are simply not studying CAM formally, or at last in a rigorous scientific manner. ECTRIMS is the place where science is presented by scientists and doctors to their peers. We'll have to look for our CAM information elsewhere.
For more information about the challenges of getting CAM into the mainstream science and medical world, read my full article: Complementary and Alternative Medicine (CAM) for MS.
This is disappointing but not all that surprising. As you have noted, those of us living with MS realize how naggingly UNclear-cut so much of the experience is, it seems irresponsible to leave out a range of possible (and anecdotally promising) treatments and interventions. And it FEELS like this range is pretty easily left out for reasons that seem crazily irresponsible: focus on profit margin & pharmco interests, scientific territorialism, blatant dismissiveness. All of this institutional and “legitimate” irresponsibility leaves us completely responsible for diving in and trying to figure out what works for us, with (and often) without professional support. For these reasons and more I really appreciate your expansive approach to thinking about (and living with) MS. It makes me think of the scene in the film Love and Other Drugs when Anne Hathaway’s character is attending a big mainstream conference on Parkinson’s only to discover an “alternative” conference across the street where people are “getting real” about their experience. I hate to think that these approaches must always be mutually exclusive and falsely opposed. Also, hope you are enjoying Amsterdam despite the conference!
It doesn’t surprise me that there is little info on CAM at ECTRIMS. I am a part time FNP living with MS so I understand. ECTRIMS is about evidenced based medicine thus they can only report what we have evidence of. We have evidence that Vit D is important in treating MS, the dose range varies for each person but the EVIDENCE proves a sub-therapeutic Vit D level is problematic in MS. Acupuncture has been widely studied and is recommended by the WHO to treat neuropathic pain and spasticity in MS and many other neurological diseases. The problem is its affects vary depending on the client and more importantly the practitioner. Personally my experience is it works amazingly but never lasts more than 48 hrs making it unaffordable. If you’re looking for scientific studies on LDN in MS I agree there should be some due to all the anecdotal data. However, be careful what you ask for because once it gets done the cost will skyrocket as a Pharm Co gets a patent.
I have been trying LDN now for over 6 months and I have sent you a few fairly long comments about my fealings about the current lack of interest by Drs in things that may not make them money as treatments, as Avonex, Betaseron etc does but I am not sure anyone ever sees them as I never hear any sort of responses. SO PLEASE. IS ANYONE REALLY
READING THIS ?
PLEASE RESPOND SOMEHOW IF YOU ARE.
Mark T
I am very interested in your use of LDN and how it’s working for you. I want to try it along with Copaxone, but I am a little nervous. They want me to try Tysabri but as I am positive for the jc virus I am not willing to risk my life. Any feedback?
Thankyou for responding.
I had also been interested in tysabri but had also heard several bad expieriences so I
Thank you for responding.
I had also been interested in tysabri but had heard of several bad reactions so I had thought it better to give it some time to get worked out. As to the copaxone, as I recall it is the only injectable, like Avonex, that isnt something in conflict with the LDN but I can’t get past the reports of muscle atrophy that I seem to recall.
Still, to date I have nothing negative to report about the LDN with the exception of still adjusting for the right dosage to get it to last longer in the day before my spasticity becomes to annoying, If dosage adjustment, currently about 4.0 ml won’t do it I will start trying to adjust the time I take it by a few hours ( earlier by a couple hours ) . Currently I take it at 9:00 PM so maybe it will move to 6:00 PM I don’t know yet.
If anyone has any feadback let me know.
Mark
Yes, I agree to all what was said above. …and I am currently working on changing things and start the revolution in medical research for MS. Stay tuned, and remember the name “PR4MS”. We are just getting the bureaucracy part done to set up our non-profit organisation, then we will need all of your support to make progress in MS research.
Talk to you soon
Martin
I just finished medical degree with honors in biotechnology, a program of 4 years. I am considering master’s in biotechnology and clinical research. Which is better and make me faster for the job?
I may sound cynical, but I’m of the opinion that research and scientific documentation on CAMs show slim pickins’ because there is no money to be made in it, so there’s no funding either. The last time a trial was done on LDN by UCSF, it was funded by a group of LDN users.
!
On another note, I’m now SPMS and have been on LDN and a modified diet that is very easy to live with since 2008…life is pretty good for the most part