The MS Trust has an email alert which highlights research in MS published in the preceding week. How do we choose what to include? And are we getting it right? This is how it works at the moment.
A huge amount of research on MS is published every week. Even if we only include what gets published in scientific and medical journals and then listed in Pubmed, a specialised search engine for medical journals, there are typically between 100 and 200 new publications every week. Different people will be interested in different areas of research so the question is how to choose what to include to suit most people most of the time. Also, how to produce a list that isn’t so long that people can’t face looking through it all.
This is what we do:
- One of the Information Officers at the Trust will look at what’s been published this week using the list on Pubmed. This means having a quick read of up to 200 abstracts like this one covering The association between multiple sclerosis-related fatigue and balance as a function of central sensory integration.
- A selection is chosen using some flexible guidelines. The more a piece of research fits with what we’re looking for, the more likely it is to make the final list. We particularly like to include research which:
- Is high quality
- Is innovative
- Will make a difference to people with MS now (or very soon)
- Presented in an understandable way
- Has huge potential to make a difference, even if it may take a lot more work (or time)
- We also face a few dilemmas:
- We have a really varied audience which includes people with MS, friends and family and health professionals. Should we only include research items that interest most of them or should we have a few that use more technical language or require specialist expertise?
- Should we always choose items that will help lots of people or should we have some that will have a high level of impact but only for a small number of people?
- Should we keep away from subjects that may be difficult to read about for someone newly diagnosed but really important to someone who is severely affected?
- Should we keep to “good news” stories? Not all research is good news – for example, some clinical trials do not show any benefit. Do people want to know about these?
- Are there topics that are off limits? For example, is it depressing to learn about how common depression is in MS? Or is it important to acknowledge this and then provide suggestions on tackling depression?
You can take a look at this week’s Research Update here. Every week we pick one or two topics to highlight – this week it is poor sleep in people with MS. The research paper is summarised, along with some background information on the topic. At the end, further information is offered and may include things that someone could do immediately to help, in this case, with sleep problems.
Overall, we try to offer a range of topics over the year, to keep people up to date with the latest research and to provide additional information that will help people right now. Are we getting it right – let us know what you think.
If you would like to receive our Research Update email alert, you can sign up here. You can unsubscribe at any time.
I would like to know more about stem cell research and the possibilty of taking part in a trial or the possibility of having this treatment
Two years ago I was chosen to take part in a stem cell study called the H.A.L.T. study using my own stem cells.
My neurologist pushed for this study because I was relapsing every month and I only seemed to respond to chemotherapy. I haven’t relapsed since.
I as well would love to see more research on this type of study.
I would very mutch be interested stem cell trial.
I have PPMS ,although still able to walk it is a struggle and quite a number of other problems.
I am 67 and a 10 year wait might be to late.
I live in hope
Yours Rob
Just a quick message to say that I read your research updates every week and find them invaluable in keeping up to date with the latest literature in MS. Thank you very much for all your efforts. Merry Christmas! Sarah.
I think your research emails are invaluable to any one with MS. Progressive MS trials are of interest to me. But think you cover most areas well considering the amount that is going on. Thank you.
Hi
I have been on Fampyra since Feb 2012 with good results. Helps with energy, ability to stand longer, strength, well worth the investment.
I have been in email contact with Biogen Idec (drug company) and they say that they are waiting on the funding application in Australia before approaching Pharmac in NZ. They will be contacting MS NZ for your input.
1 am interested in any drug that will help me with walking and balance,thank you bill.
I enjoy the research emails, I’m interested in new information that is available, even if it does not directly apply to me. I think it helps stimulate the brain, I also enjoy learning.
I am interested in the correlation between fatigue and balance, particularly as it affects me a lot. I read the article with interest. I would like to see a wide variety of articles on all sorts of MS related problems including ones that may not appeal to the newly diagnosed.
I find the research update very helpful. I recently picked up on the yoga research in Germany which found certain exercises helpful in bringing some measure of control to the problem of incontinance. I’ve started classes and the early results are very positive (I’ve had primary progressive for 9 years).
Regarding how you cover “bad news” I strongly believe in the unvarnished truth. There’s absolutely nothing to be gained by hiding things.
Definitely stem cell research and results!!!!
I have primary progressive ms since mid nov 2012 I am interested in research drugs for this.Tiredness is my major problem, I dont work now.