Bee stings
Posted: Sun Jan 02, 2005 9:27 am
Dear all,
Article on BBC website on bee stings and ms
http://news.bbc.co.uk/1/hi/england/norfolk/4134375.stm
Happy new year to you all. 2005 sounds like a year from Star Trek - it's a pity that our scientists are still in the dark ages when it comes to MS. The NMSS website says that it has spent $400 million to date on research. When combined with the total spent by all other societies / countries we could be looking at $3/4 billion spanning the last 50 years. Yet what do we know about MS - no one knows what causes it (virus, bacteria, diet, etc etc), why women get it more, whether it is an auto-immune disease or whether the immune response is secondary etc etc. Not one answer to one reasonable question. Lets hope that by the end of 2005 some definitive answers can be found so that real progress can be made. The big drugs companies who have put all their eggs in the auto-immune theory will be keen to keep the theory alive. Let's hope the researchers have the courage to challenge this theory and prove it one way or the other.
We also need some definitive answers on treatments. The list is endless - bee stings, diet, CRAB drugs, abx, snake venom, sunlight, Goats serum, LDN etc etc. We need to know what does and does not work. What we really need is something that protects our nervous system - something that stops the progress of this disease (making good the damage already done can come a little later - first we need to protect what we have got left).
What we don't want by the end of the year is a load more unanswered questions posed by the research community. What we also don't want is another huge list of possible treatments - rabbit droppings, napalm etc. There are too many interested parties out there who are doing very nicely out of MS. They must be shaking in their boots that someday someone will get to the bottom of this riddle and then identify the best treatment - hopefully something readily available (maybe abx) and cheap.
My other hope for the new year is that the research community will take some risks and stop focusing on EAE - it doesn't seem to ever deliver the right answer which might well imply that it is not like MS at all. Also stop injecting mice - there must be better ways such as computer / statistical modelling techniques. Mice and men really are very different. Also, stop treating people with MS as mice - there seems to be endless trials involving people with this disease. It can't be fair to have some of these sufferers on placebos. Again, the science / research world needs to think more creatively. The best they can come up with at the moment is to combine CRAB drugs - more money for the drugs companies but will they really help stop the progress of this disease? I hope Tysabri is effective but who dreams up the price $24k a year. I know R&D is expensive but this must be more expensive than gold (on a weight basis). One wouldn't mind if it is a cure but there's no data to suggest it is. Would you go to a restaurant and pay the bill up front before you'd tasted the food? Payment by results should be the rule. It would certainly test the companies' confidence in their products.
These are my new year hopes, I would be interested in hearing yours.
Bromley
Article on BBC website on bee stings and ms
http://news.bbc.co.uk/1/hi/england/norfolk/4134375.stm
Happy new year to you all. 2005 sounds like a year from Star Trek - it's a pity that our scientists are still in the dark ages when it comes to MS. The NMSS website says that it has spent $400 million to date on research. When combined with the total spent by all other societies / countries we could be looking at $3/4 billion spanning the last 50 years. Yet what do we know about MS - no one knows what causes it (virus, bacteria, diet, etc etc), why women get it more, whether it is an auto-immune disease or whether the immune response is secondary etc etc. Not one answer to one reasonable question. Lets hope that by the end of 2005 some definitive answers can be found so that real progress can be made. The big drugs companies who have put all their eggs in the auto-immune theory will be keen to keep the theory alive. Let's hope the researchers have the courage to challenge this theory and prove it one way or the other.
We also need some definitive answers on treatments. The list is endless - bee stings, diet, CRAB drugs, abx, snake venom, sunlight, Goats serum, LDN etc etc. We need to know what does and does not work. What we really need is something that protects our nervous system - something that stops the progress of this disease (making good the damage already done can come a little later - first we need to protect what we have got left).
What we don't want by the end of the year is a load more unanswered questions posed by the research community. What we also don't want is another huge list of possible treatments - rabbit droppings, napalm etc. There are too many interested parties out there who are doing very nicely out of MS. They must be shaking in their boots that someday someone will get to the bottom of this riddle and then identify the best treatment - hopefully something readily available (maybe abx) and cheap.
My other hope for the new year is that the research community will take some risks and stop focusing on EAE - it doesn't seem to ever deliver the right answer which might well imply that it is not like MS at all. Also stop injecting mice - there must be better ways such as computer / statistical modelling techniques. Mice and men really are very different. Also, stop treating people with MS as mice - there seems to be endless trials involving people with this disease. It can't be fair to have some of these sufferers on placebos. Again, the science / research world needs to think more creatively. The best they can come up with at the moment is to combine CRAB drugs - more money for the drugs companies but will they really help stop the progress of this disease? I hope Tysabri is effective but who dreams up the price $24k a year. I know R&D is expensive but this must be more expensive than gold (on a weight basis). One wouldn't mind if it is a cure but there's no data to suggest it is. Would you go to a restaurant and pay the bill up front before you'd tasted the food? Payment by results should be the rule. It would certainly test the companies' confidence in their products.
These are my new year hopes, I would be interested in hearing yours.
Bromley