This morning on Mark Bannerman's breakfast program (Radio National) he had a science story from Chris Smith about stem cell research.
A scientific team has taken a group of mice with a genetic deficiency related to damaged myelin on their nerves. Using human stem cells from aborted foetal tissue they've implanted stem cells into the mice and successfully regrown the myelin coatings. Normally, the stem cells would have been rejected by the immune systems of the mice but this didn't happen because these particular mice were immune deficient. Of the mice treated, 25% continued to live beyond their normal life expectancy. I'm not going to comment about this study, I'm just bringing it to your attention as being another avenue of medical research related to MS. If you'd like to read more you'll find it at http://www.abc.net.au/rn/breakfast/stories/2008/2266734.htm
Speaking of stem cell research...
After Christopher Reeve had the riding accident that resulted in quadriplegia he campaigned for stem cell research and invested in many research programs. At the same time, he set up a physical training support program to ensure that his body was kept at the peak of it's health. I read somewhere that by doing this he ensured that his body became healthier after the accident than it was prior to it. He was completely convinced that a solution would be found for his condition and he wanted to be ready for it when it did. This is another example where the health of muscle tissue doesn't depend on the nerves connected to them. I have a great deal of respect for the things he achieved after the accident and I sincerely feel that he was more of a Superman in his wheelchair than he was as an actor. A sad loss, but his legacy lives on.
Thursday, June 5, 2008
Choices
In the mail yesterday were two newsletters about MS. One was MS Life, produced by the MS Society in Qld and the other was the newsletter of MS research.
One of the articles in MS Life was about someone who was diagnosed 4 years ago and is now on Beta Interferon so I thought I'd check what this particular drug does. This article http://www.sfn.org/index.cfm?pagename=brainbriefings_betainterferonandmultiplesclerosis explains that Beta-Interferon does a similar thing to the Tysabri in terms of strengthening the blood-brain barrier and it also claims to reduce inflamation. The article doesn't mention how effective it's proving to be but I recall reading elsewhere that it's not hugely effective, although it's all speculation as I explained in my original post.
After I read the research newsletter as well I came to the conclusion that the system has been largely set up to deal with the worst cases, not to provide useful information for the majority of us who are generally well most of the time. MS Life says that every day 3 young Australians are diagnosed with MS. What are their doctors telling them about how to deal with it? Are they being frightened into taking Beta-Interferon from day one? Are they being advised to take up an exercise program to maintain their muscle strength, or are they told to rest and take it easy instead?
Many years ago I used to go to the Dutton Park centre (in Brisbane) to attend the monthly meetings of People with MS. I did this for a number of years and a lot of the members at the time were self-injecting Beta Interferon, convinced that they were better for it. It was my observation, however, that over time they became foggier in their mental acuity and I became convinced that this was more a function of the drug than of the MS itself. It was during this period that I was experimenting with ice skating and having positive results so I explained this to the members on a number of occasions. Noone else seemed willing to try it for themselves so I stopped going to the meetings and continued along my own path.
F5m is an organisation that's aiming to raise $5million for MS research and according to the newsletter their tally is $1.8million to date. That's all well and good but any results they're likely to achieve through the research are not going to help the 3 young Australians who were supposedly diagnosed with it today..or yesterday..or tomorrow so it's really up to the individual to decide what to do and how to manage the disease.
In my view there are clearly two options; either to start down the slippery path of drug therapy, as I'd guess most neurologists are recommending, or to join a gym and maintain a high level of physical fitness to be able to cope with any possible adversity. I guess there's a third option - to do both, but that may involve the side effects of drug therapy, not good for overall well being and therefore contra to the fitness idea.
If you were to become one of those 3 young Australians tomorrow what do you think you would choose to do?
One of the articles in MS Life was about someone who was diagnosed 4 years ago and is now on Beta Interferon so I thought I'd check what this particular drug does. This article http://www.sfn.org/index.cfm?pagename=brainbriefings_betainterferonandmultiplesclerosis explains that Beta-Interferon does a similar thing to the Tysabri in terms of strengthening the blood-brain barrier and it also claims to reduce inflamation. The article doesn't mention how effective it's proving to be but I recall reading elsewhere that it's not hugely effective, although it's all speculation as I explained in my original post.
After I read the research newsletter as well I came to the conclusion that the system has been largely set up to deal with the worst cases, not to provide useful information for the majority of us who are generally well most of the time. MS Life says that every day 3 young Australians are diagnosed with MS. What are their doctors telling them about how to deal with it? Are they being frightened into taking Beta-Interferon from day one? Are they being advised to take up an exercise program to maintain their muscle strength, or are they told to rest and take it easy instead?
Many years ago I used to go to the Dutton Park centre (in Brisbane) to attend the monthly meetings of People with MS. I did this for a number of years and a lot of the members at the time were self-injecting Beta Interferon, convinced that they were better for it. It was my observation, however, that over time they became foggier in their mental acuity and I became convinced that this was more a function of the drug than of the MS itself. It was during this period that I was experimenting with ice skating and having positive results so I explained this to the members on a number of occasions. Noone else seemed willing to try it for themselves so I stopped going to the meetings and continued along my own path.
F5m is an organisation that's aiming to raise $5million for MS research and according to the newsletter their tally is $1.8million to date. That's all well and good but any results they're likely to achieve through the research are not going to help the 3 young Australians who were supposedly diagnosed with it today..or yesterday..or tomorrow so it's really up to the individual to decide what to do and how to manage the disease.
In my view there are clearly two options; either to start down the slippery path of drug therapy, as I'd guess most neurologists are recommending, or to join a gym and maintain a high level of physical fitness to be able to cope with any possible adversity. I guess there's a third option - to do both, but that may involve the side effects of drug therapy, not good for overall well being and therefore contra to the fitness idea.
If you were to become one of those 3 young Australians tomorrow what do you think you would choose to do?
Wednesday, June 4, 2008
links
I forgot to add a couple of links in my earlier post. The history of Tysabri is here http://www.webmd.com/multiple-sclerosis/news/20060605/fda-lets-ms-drug-tysabri-return and the TGA document is here http://www.msra.org.au/news/documents/Tysabri-July07.pdf
On thinking about it a bit more I guess the major problem with having no T-cells in the brain would be if there's a rogue virus around as there'd be no defence mechanism in place to knock it out. I also wonder what effect the extra protein on the T-cell would have when it's elsewhere in the body.
The human body is such an amazingly complex organism that I question the validity of using pharmaceuticals that target specific chemical processes in isolation. I wonder if we know enough of the big picture to completely understand the ramifications of a particular action. That's why I'd rather not experiment on myself and why I choose to stay chemical free in the management of my MS.
On thinking about it a bit more I guess the major problem with having no T-cells in the brain would be if there's a rogue virus around as there'd be no defence mechanism in place to knock it out. I also wonder what effect the extra protein on the T-cell would have when it's elsewhere in the body.
The human body is such an amazingly complex organism that I question the validity of using pharmaceuticals that target specific chemical processes in isolation. I wonder if we know enough of the big picture to completely understand the ramifications of a particular action. That's why I'd rather not experiment on myself and why I choose to stay chemical free in the management of my MS.
Tuesday, June 3, 2008
MS Awareness
It's MS Awareness Week here in Australia so I've heard and seen some new information that I'd like to share and comment about.
In the recent budget the Government put a new MS drug on the PBS list that will allow more people to access it from July 1st. It called Tysabri and it's manufactured by Biogen-Idec.
I did a search on the net and this is what I found out about it. Tysabri was originally issued in the US in 2004. It was removed a year later after a few people taking the drug contracted PML (progressive multifocal leukoencephalopathy) and died. It was then allowed back onto the market in 2006 after "appropriate steps" were taken.
In July 2007 it was approved by the Australian Therapeutic Goods Administration. At that time anyone taking it had to pay $33000 per year for the priviledge. The recent PBS listing brings that price down to an affordable level, however (and I quote) "due to the emergence of the link to PML in the clinical trials, specific safety procedures and patient tracking systems for adverse events have been put in place worldwide." I assume that is what they meant by appropriate steps.
What does Tysabri do?
It's designed to hamper the movement of immune cells from the bloodstream across the blood-brain barrier into the brain and spinal cord. It does this by attaching itself to a protein in the T-cell (immune cell) to prevent it going in.
Ok, let's look at the big picture here. MS is an auto-immune disease, which means that it's the body's own immune system attacking the myelin coating on nerves. The more frequently this happens the more damage occurs, therefore the worse the prognosis. So, Tysabri changes the chemistry of the T-cells and prevents them from crossing over from the blood to the brain and spinal cord, reducing the possiblity of the T-cells being destructive.
Is this a good thing? (From here I'm going to be totally subjective so if you're expecting an unbiased argument then you may as well tune out at this point)
IF I had an aggressive relapsing/remitting form of MS (which I don't) and I was feeling totally depressed and disillusioned about life then, and only then, I MIGHT choose to invest in this sort of insurance policy, because that's all it is. It seems to adopt a "shoot the messenger" approach because no one knows who or what is sending the messages in the first place.
Does anyone really know what role the T-cells play in the brain and spinal cord? If you do then please tell me. I assume that the lack of T-cells in the people on the trial who died may have allowed a killer virus to get into the brain. What other consequences might there be if there are no T-cells getting to the brain? Is there some sybiotic relationship between T-cells and some other brain component that has a role to play in thought processes or memory? I assume that we don't know this, which is why I wouldn't want to experiment with my own brain chemistry.
If you have any view on what I've written then please leave a comment and I'll be happy to discuss it with you.
In the recent budget the Government put a new MS drug on the PBS list that will allow more people to access it from July 1st. It called Tysabri and it's manufactured by Biogen-Idec.
I did a search on the net and this is what I found out about it. Tysabri was originally issued in the US in 2004. It was removed a year later after a few people taking the drug contracted PML (progressive multifocal leukoencephalopathy) and died. It was then allowed back onto the market in 2006 after "appropriate steps" were taken.
In July 2007 it was approved by the Australian Therapeutic Goods Administration. At that time anyone taking it had to pay $33000 per year for the priviledge. The recent PBS listing brings that price down to an affordable level, however (and I quote) "due to the emergence of the link to PML in the clinical trials, specific safety procedures and patient tracking systems for adverse events have been put in place worldwide." I assume that is what they meant by appropriate steps.
What does Tysabri do?
It's designed to hamper the movement of immune cells from the bloodstream across the blood-brain barrier into the brain and spinal cord. It does this by attaching itself to a protein in the T-cell (immune cell) to prevent it going in.
Ok, let's look at the big picture here. MS is an auto-immune disease, which means that it's the body's own immune system attacking the myelin coating on nerves. The more frequently this happens the more damage occurs, therefore the worse the prognosis. So, Tysabri changes the chemistry of the T-cells and prevents them from crossing over from the blood to the brain and spinal cord, reducing the possiblity of the T-cells being destructive.
Is this a good thing? (From here I'm going to be totally subjective so if you're expecting an unbiased argument then you may as well tune out at this point)
IF I had an aggressive relapsing/remitting form of MS (which I don't) and I was feeling totally depressed and disillusioned about life then, and only then, I MIGHT choose to invest in this sort of insurance policy, because that's all it is. It seems to adopt a "shoot the messenger" approach because no one knows who or what is sending the messages in the first place.
Does anyone really know what role the T-cells play in the brain and spinal cord? If you do then please tell me. I assume that the lack of T-cells in the people on the trial who died may have allowed a killer virus to get into the brain. What other consequences might there be if there are no T-cells getting to the brain? Is there some sybiotic relationship between T-cells and some other brain component that has a role to play in thought processes or memory? I assume that we don't know this, which is why I wouldn't want to experiment with my own brain chemistry.
If you have any view on what I've written then please leave a comment and I'll be happy to discuss it with you.
Thursday, May 29, 2008
The story
What is MS?
The nerves in the body have a coating on them, called myelin, that insulates the messages that travel along them, in the same way as the insulating material around electrical cables does. In people with MS something attacks the myelin randomly and damages it so that messages sent along the affected nerve can go astray in the same way as broken insulation around electrical wires can cause the signals to jump elsewhere. When the body repairs this nerve damage it results in scar tissue around the nerve and this type of tissue is not as good a conductor as the original so messages along the nerve travel more slowly. The term Multiple Sclerosis means “multiple scars”.
The assumption is that the body’s own defence mechanisms are the source of the attack, hence the description of MS as an auto-immune disease. The mystery of MS is that no one knows what causes the immune system to attack itself.
There are two forms of MS – relapsing/remitting and progressive. In the relapsing form the attack (relapse) is followed by a recovery (remission) and when the myelin is rebuilt there is a resulting weakness that remains because of the scar tissue. The progressive form is characterised by a gradual weakening of muscle response that usually has no recovery phase.
As the load of scar tissue increases along affected parts of the nervous system messages along them are slowed down even more and a progressive weakening of muscles occurs as the signals to them are diminished. The principle of “use it or lose it” comes into effect and these unused muscles deteriorate and eventually atrophy. The reason for the gradual loss of mobility, therefore, is that the muscles weaken through lack of use because the nerves can no longer stimulate them effectively.
The important message here is that the muscles of the body are not affected by the MS directly, only the nerves are, so it’s possible to strengthen and rebuild them. As the brain is “elastic” and capable of learning, it’s possible to “rewire” it to bypass damaged nerve pathways in the process.
My story
I had my first episode of MS in 1981. It was double vision and was treated using steroids so I recovered my vision in about 6 weeks. I have the progressive form of MS and experienced a gradual loss of muscle strength and balance over the next 17 years. By then I used a walking stick at all times and frequently experienced falls. After the initial drug treatment I made a choice to avoid medication of any sort and still take no pharmaceuticals for the problem. I believe that the available drugs are a bigger problem than the MS itself because they are not a cure, merely an insurance policy.
By 1998 I’d tried just about everything I could think of from the alternative medicine field with no joy so I tried an unusual experiment. As a teenager I’d been an ice skater and I wondered whether I could still do it so I headed over to Boondall Iceworld, put on a pair of skates and stepped onto the ice. It was probably the most embarrassing moment of my life when I realised that I could barely stand and had to tow myself around the barrier. It didn’t occur to me to turn around and go back so I stuck to it and slowly made my way around the rink. The circuit took me 45 minutes and it was a great relief to get off the ice. I thought it had been a failed experiment until I took off my skates, put on my shoes and stood up to walk out.
Surprisingly, I was able to walk with more strength, which was unexpected as I thought I’d be fatigued from my work around the rink. So I went back the following week and was delighted to find that I was able to complete 3 circuits of the rink in 45 minutes. A week later I went around the rink 5 times in 45 minutes so I went straight to the rink shop and bought myself a pair of skates. Why the skating was so beneficial was a mystery until I worked out that my leg muscles were being activated again after a long time of little or no exercise. This activation resulted in a gradual improvement in muscle strength.
Skating became a regular activity for me and a year later I timed myself again. I could do the circuit in 4.5 minutes! By this time my walking had also improved and I was able to completely give up using my stick by 2002.
In 2000 I had joined a gym and started weight training. When I first tried the leg press at that time I could only push 20lbs very slowly for about 20 seconds. The last time I checked myself I was up to 145lbs and could work at it for over a minute. I now have a personal trainer who gives me a hard time once a week.
I strongly believe that my recovery from progressive MS (this isn’t the usual outcome) has been possible because regular exercise has resulted in a rewiring of my neural circuitry. I had an MRI recently which showed that there has been no change in terms of the existing lesions. The fact that the lesions still exist while my mobility has improved indicates that I no longer use the damaged wiring.
It is my firm belief that my experience is not a miracle or unique and that many people currently living with MS can benefit in the same way by participating in a weight training program.
Medical research
Millions of dollars have been invested in research and still the mystery remains. The people who will possibly benefit from this spending are most likely going to be those people who have yet to be diagnosed with the illness, not those who have it here and now.
The drugs currently available do not cure the disease. They are intended to reduce the number of likely relapses only, as the frequency of relapses determines the amount of damage to myelin. However, the frequency of relapses is a totally unknown factor so whether the drugs are working or not is mere speculation. The best way to determine this would be to observe the patient’s progress over a 12-month period then use a time-machine to rewind and see what difference the drugs would have made, if any. This is clearly impossible so individuals have to take a gamble on the outcome.
If, in 10 years time or later, there is a cure for MS then those people who are given that cure will still have many years of recovery ahead of them. It makes sense to me to start the recovery process now so that the cure will simply be icing on the cake.
Other factors
A diagnosis of MS is a frightening prospect. The possible outcomes are daunting and debilitating. I went through all of the usual denial processes until I came to accept the diagnosis and from there was able to work out how to manage the illness for myself. At the time of my diagnosis there were no medications other than steroids and they were only used during an attack. The usual response from neurologists was a “wait and see” approach. I am truly grateful for this as I suspect that now drugs are recommended too frequently for people who are newly-diagnosed.
Thought processes in the brain work by chemical interactions between synapses. All chemicals introduced into the body interfere with these interactions and in fact are designed to do so. My choice to manage my illness in non-chemical ways was motivated by my desire to keep my brain chemical-free and functioning as it was intended to. I decided that I could live with physical disability but mental disability was another matter entirely and not for me.
I can understand the fear that motivates people into wanting to try anything that’s available for something as debilitating as MS but I think there’s room for more education on the subject.
My view now is that a “wait and see” approach should be adopted after the first episode and the patient should be referred to a gym to do weight training. This training should become a regular activity even after subsequent relapses, if any. This is advisable because there is likely to be a faster recovery if the patient’s physical strength is at the optimum level for them.
Some of the pieces of gym equipment were difficult to use when I first started due to the weak state of my muscles. I would like to see some of the money raised for MS diverted into the development of equipment that is more specifically aimed at anyone who starts training at a strength level considerably lower than the regular members of the gym.
Above all, I would like to see other people with MS derive the benefits that I have done by participating in a fitness program. It’s taken me 10 years to get to where I am now and if a cure for MS was found tomorrow then I’m already 10 years ahead of the game.
The nerves in the body have a coating on them, called myelin, that insulates the messages that travel along them, in the same way as the insulating material around electrical cables does. In people with MS something attacks the myelin randomly and damages it so that messages sent along the affected nerve can go astray in the same way as broken insulation around electrical wires can cause the signals to jump elsewhere. When the body repairs this nerve damage it results in scar tissue around the nerve and this type of tissue is not as good a conductor as the original so messages along the nerve travel more slowly. The term Multiple Sclerosis means “multiple scars”.
The assumption is that the body’s own defence mechanisms are the source of the attack, hence the description of MS as an auto-immune disease. The mystery of MS is that no one knows what causes the immune system to attack itself.
There are two forms of MS – relapsing/remitting and progressive. In the relapsing form the attack (relapse) is followed by a recovery (remission) and when the myelin is rebuilt there is a resulting weakness that remains because of the scar tissue. The progressive form is characterised by a gradual weakening of muscle response that usually has no recovery phase.
As the load of scar tissue increases along affected parts of the nervous system messages along them are slowed down even more and a progressive weakening of muscles occurs as the signals to them are diminished. The principle of “use it or lose it” comes into effect and these unused muscles deteriorate and eventually atrophy. The reason for the gradual loss of mobility, therefore, is that the muscles weaken through lack of use because the nerves can no longer stimulate them effectively.
The important message here is that the muscles of the body are not affected by the MS directly, only the nerves are, so it’s possible to strengthen and rebuild them. As the brain is “elastic” and capable of learning, it’s possible to “rewire” it to bypass damaged nerve pathways in the process.
My story
I had my first episode of MS in 1981. It was double vision and was treated using steroids so I recovered my vision in about 6 weeks. I have the progressive form of MS and experienced a gradual loss of muscle strength and balance over the next 17 years. By then I used a walking stick at all times and frequently experienced falls. After the initial drug treatment I made a choice to avoid medication of any sort and still take no pharmaceuticals for the problem. I believe that the available drugs are a bigger problem than the MS itself because they are not a cure, merely an insurance policy.
By 1998 I’d tried just about everything I could think of from the alternative medicine field with no joy so I tried an unusual experiment. As a teenager I’d been an ice skater and I wondered whether I could still do it so I headed over to Boondall Iceworld, put on a pair of skates and stepped onto the ice. It was probably the most embarrassing moment of my life when I realised that I could barely stand and had to tow myself around the barrier. It didn’t occur to me to turn around and go back so I stuck to it and slowly made my way around the rink. The circuit took me 45 minutes and it was a great relief to get off the ice. I thought it had been a failed experiment until I took off my skates, put on my shoes and stood up to walk out.
Surprisingly, I was able to walk with more strength, which was unexpected as I thought I’d be fatigued from my work around the rink. So I went back the following week and was delighted to find that I was able to complete 3 circuits of the rink in 45 minutes. A week later I went around the rink 5 times in 45 minutes so I went straight to the rink shop and bought myself a pair of skates. Why the skating was so beneficial was a mystery until I worked out that my leg muscles were being activated again after a long time of little or no exercise. This activation resulted in a gradual improvement in muscle strength.
Skating became a regular activity for me and a year later I timed myself again. I could do the circuit in 4.5 minutes! By this time my walking had also improved and I was able to completely give up using my stick by 2002.
In 2000 I had joined a gym and started weight training. When I first tried the leg press at that time I could only push 20lbs very slowly for about 20 seconds. The last time I checked myself I was up to 145lbs and could work at it for over a minute. I now have a personal trainer who gives me a hard time once a week.
I strongly believe that my recovery from progressive MS (this isn’t the usual outcome) has been possible because regular exercise has resulted in a rewiring of my neural circuitry. I had an MRI recently which showed that there has been no change in terms of the existing lesions. The fact that the lesions still exist while my mobility has improved indicates that I no longer use the damaged wiring.
It is my firm belief that my experience is not a miracle or unique and that many people currently living with MS can benefit in the same way by participating in a weight training program.
Medical research
Millions of dollars have been invested in research and still the mystery remains. The people who will possibly benefit from this spending are most likely going to be those people who have yet to be diagnosed with the illness, not those who have it here and now.
The drugs currently available do not cure the disease. They are intended to reduce the number of likely relapses only, as the frequency of relapses determines the amount of damage to myelin. However, the frequency of relapses is a totally unknown factor so whether the drugs are working or not is mere speculation. The best way to determine this would be to observe the patient’s progress over a 12-month period then use a time-machine to rewind and see what difference the drugs would have made, if any. This is clearly impossible so individuals have to take a gamble on the outcome.
If, in 10 years time or later, there is a cure for MS then those people who are given that cure will still have many years of recovery ahead of them. It makes sense to me to start the recovery process now so that the cure will simply be icing on the cake.
Other factors
A diagnosis of MS is a frightening prospect. The possible outcomes are daunting and debilitating. I went through all of the usual denial processes until I came to accept the diagnosis and from there was able to work out how to manage the illness for myself. At the time of my diagnosis there were no medications other than steroids and they were only used during an attack. The usual response from neurologists was a “wait and see” approach. I am truly grateful for this as I suspect that now drugs are recommended too frequently for people who are newly-diagnosed.
Thought processes in the brain work by chemical interactions between synapses. All chemicals introduced into the body interfere with these interactions and in fact are designed to do so. My choice to manage my illness in non-chemical ways was motivated by my desire to keep my brain chemical-free and functioning as it was intended to. I decided that I could live with physical disability but mental disability was another matter entirely and not for me.
I can understand the fear that motivates people into wanting to try anything that’s available for something as debilitating as MS but I think there’s room for more education on the subject.
My view now is that a “wait and see” approach should be adopted after the first episode and the patient should be referred to a gym to do weight training. This training should become a regular activity even after subsequent relapses, if any. This is advisable because there is likely to be a faster recovery if the patient’s physical strength is at the optimum level for them.
Some of the pieces of gym equipment were difficult to use when I first started due to the weak state of my muscles. I would like to see some of the money raised for MS diverted into the development of equipment that is more specifically aimed at anyone who starts training at a strength level considerably lower than the regular members of the gym.
Above all, I would like to see other people with MS derive the benefits that I have done by participating in a fitness program. It’s taken me 10 years to get to where I am now and if a cure for MS was found tomorrow then I’m already 10 years ahead of the game.
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