I have said I don't advise anyone what drug not to take. Remember this when you read the following: I am not a doctor, and do not give anyone medical advice.
I now feel that the only way we can help ourselves is a full boycott of all DMDs. We have not done this to ourselves. We have been put into this position by greed.
These drugs don't do much anyway from what I can tell. For some there is a limit to how much you can take. Others poison you in their own ways.
CCSVI came at a very inconvenient time for DMD manufacturers, with the new (but still stellarly expensive) pills just approved. I know somebody who's on them. I will be telling her about a boycott.
We have all seen amounts of money talked about. Amounts like $10M that the MS Society of Canada wants from the taxpayer. $150 Million to treat everyone in Canada at $2000 each. $1.5 Billion to treat a population ten times ours, like the US, at $2000 each. Our government just spent a billion of our money on a meeting. Which we don't have to spend in the first place.
ALL of these figures are DWARFED by the revenues of the DMD manufacturers. $8 billion is an unimaginable amount of money, and that's PER YEAR.
Of course all possible roadblocks are being used. Now they are doing this to a man like Dr. Sclafani, who is one of the best hopes we have,
The MS Society is not on your side, either. Just today I saw that the hope is not only that Zamboni's theories will be disproved by the MS Society but that MS will be found to cause CCSVI, at an early age, by the childhood MS study. I am willing to contribute if anyone wants to take a child to Poland.
These studies are a joke, anyway. There is no way on earth that that amount will pay more than the sugar for their coffee. The MS Society is COUNTING ON that $10M to flesh them out. Write to your MP, Health Minister, and Prime Minister (if you are Canadian) and tell them NOT TO GIVE THAT MONEY TO THEM. And perhaps they want money from American taxpayers as well. A boycott of the MS Society as well, seems appropriate.
Lastly, do we really need any more neurology appointments? I sure don't. I think I am definitely in the 'adios' category from their point of view anyway. They leave my real care to others, and just tell me what I have known a long time without them. I don't need their prescription pads anymore. I'd rather die without Liberation, than give them or drug companies any more blood money. I guess they might be counting on that as well. These IRBs can be sued too. The law takes a long time, but it is mostly fair.
Dr.Sclafani, I have listened to you for several months, and I am grateful for all the information and all you have done for us. I feel as though a lot of very vulnerable people have been deliberately led by your IRB on a wild goose chase, never intending to allow your trial. The government of my country is ostensibly going to allow treatment with trials at the same time. I think there is a lot of power being wielded in high places and we shall soon see who owns our government.
You can still do it.
I'm sure we can come up with some Alliance equipment money or something. And rent space somewhere.
It might be time for some Vitamin C.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience