Hi, my name is Niall (pronounced Neil) and I'm a neurologist working with people affected by MS in the West of Scotland area.
I grew up in Lanarkshire and I became interested in MS when I was working as a trainee in Dundee. It's a complex disease and looking after people affected by MS in clinic gives you a chance to get to know them a bit over the years which is quite nice. It's also fairly sad when you see how much damage uncontrolled MS can do to a person.
Socially, outside my doctor life, I know about 7 or 8 people who have MS. Friends from when I grew up, people I went to uni with, parents of friends and spouses of friends. MS is everywhere and you can't tell just by looking at someone. It's part of everyday life.
We are getting better at treating MS but we have a lot of work to do. Often people are scared as they are in a very uncertain situation and they will look to non-mainstream places for treatment. I could tell you some heartbreaking stories but I won't.
We really need more effective treatments for late stage MS and progressive MS. We need something that will stop MS and ideally repair damage. We don't have that yet. Some people claim that stem cells are the answer to everything.
Sadly we are not there yet.
I look after a number of people who have gone abroad and paid privately for what they have been told are stem cell treatments. Some of them have paid up to £60,000 for treatment. Unfortunately, I have not seen any real evidence that these treatments have helped although some people do report a benefit. I'm just upset that a person has spent their savings on a treatment which, to my eyes, does not appear to have helped.
I would advise anyone thinking about travelling to pay privately for treatment to think long and hard about it.
The recent stem cell trial from Sheffield is impressive but some points should be considered.
1 - It was very small - only 55 people were given stem cells
2 - The control group wasn't very good - again, only 55 people on an inconsistent set of treatments
3 - The trial was for people with highly active relapsing remitting MS, not progressive disease.
4 - While disability scores improved in many people this is not unusual in relapsing remitting MS as a person recovers from a relapse.
5 - We cannot say this treatment is any better than alemtuzumab
In this procedure stem cells are taken from the patient and stored. The remaining bone marrow is then destroyed with toxic drugs which obliterates the immune system. The stored stem cells are then given back to the patient in a drip, replacing the old bone marrow and allowing a new immune system to form. There is a risk of life threatening infection and the toxic drugs could make you sterile.
If stem cell treatment was a drug, it would never be licensed with this evidence and we wouldn't be allowed to use it.
We need a bigger trial and I think this will be happening in the near future.
Ideally this trial would
1 - compare autologous haematopoietic stem cell transplantation with alemtuzumab
2 - have large numbers of patients (ideally several hundred on each side)
3 - happen in centres throughout the UK
4 - initially focus on RRMS but then be repeated in PPMS and /or SPMS
I think that stem cell transplantation will turn out to be a very good treatment for early relapsing remitting MS but I cannot predict that it will be better than alemtuzumab. Sadly, there is no evidence that stem cells will repair established damage. A large, well conducted trial is needed.
If a larger trial proves that stem cell treatment is as good as or better than alemtuzumab I think we will use it widely. Overall this treatment approach may prove to be much cheaper than many of our drugs.
I just want us to get it right. We need to know that stem cells will work for people with MS so that we can use this treatment routinely in the NHS. I don't want to see more people spending their life savings on treatment of dubious quality in another country when there is not enough evidence for us to know that it works.
Right now we do not have enough evidence to routinely recommend stem cell treatment.
For more information:
The MS Trust have a page on Stem Cells for MS.
The Euro Stem Cell and the Closer Look at Stem Cells websites both give more objective information on the issues surrounding stem cell treatments. This patient handbook is pretty good.
Please share your thoughts, experiences and questions in the comments.