Posted: Mon Dec 07, 2009 3:09 pm
JohnnyMac... Your letter is much better than mine. More apt to get a response. I was probably too....... caustic ?? Let us know if you DO get a response.
ozarkcanoer
ozarkcanoer
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Dear UK MS patients and caretakers-
The lead voice against further research of CCSVI in MS in your country is Dr. Alastair Compston. He has stated about CCSVI research:
"The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS."
http://www.mssociety.org.uk/news_events ... dvice.html
Yet, Dr. Compston recommends MS patients be treated with Campath, even though he states, on record in a University of Cambridge article on Campath-
‘We realised that, although we had stopped disease activity in terms of new inflammatory brain lesions and had reduced the number of attacks that people were having, most of our patients were continuing to deteriorate."
http://www.research-horizons.cam.ac.uk/ ... h--p-.aspx
Why would Dr. Compston recommend continued research money be spent for a drug which does not address the neurodegenerative aspect of MS? Why would he discourage research into a potential CAUSE of neurodegeneration, that being iron deposition and hypoxic injury to the brain? This is the model Dr. Paolo Zamboni is pursuing in venous stenosis and reflux.
Why not investigate CCSVI?
http://www.research-horizons.cam.ac.uk/ ... h--p-.aspx
"Last year, the revenue from the use of Campath-1H for the treatment of CLL was around US$100 million but this income may eventually be dwarfed by the revenue generated from the treatment of early relapsing–remitting MS with Campath-1H (the generic name for the drug is alemtuzumab; its registered name is Campath®). "
"Two large Phase 3 trials are now under way that will finish in 2011. If all goes well, Genzyme expects to apply for marketing approval in 2012, 21 years after the first patient with MS was treated with Campath-1H (and 33 years after Waldmann’s team started the research that produced Campath-1H). ‘So far, ‘ says Compston, ‘we have spent 18 years carefully observing treated patients and learning from our mistakes… With more secure funding for our basic and clinical research in the 1990s, we might have been able to move more quickly. But with a disease like MS, which was then poorly understood, it was always going to take a long while to develop a new drug.’"
nothing against campath, Jill. I know in RRMS folks it really helps, but even Dr. Compston (the lead doctor on the studies) admitted it didn't stop neurodegeneration.ozarkcanoer wrote:Thanks, cheer... I am currently on Copaxone. If my neuro ever recommends that I take Campath, I will tell him no thanks !!!
There is SO MUCH money involved in Campath succeeding, that I don't see how Dr. Compston can be an impartial judge as to whether or not CCSVI should be researched in the UK. It seems disingenuous at best, corrupt at worst.‘We realised that, although we had stopped disease activity in terms of new inflammatory brain lesions and had reduced the number of attacks that people were having, most of our patients were continuing to deteriorate.
Because his quote was taken out of context. The article goes on to say:cheerleader wrote:....Yet, Dr. Compston recommends MS patients be treated with Campath, even though he states, on record in a University of Cambridge article on Campath-
‘We realised that, although we had stopped disease activity in terms of new inflammatory brain lesions and had reduced the number of attacks that people were having, most of our patients were continuing to deteriorate."
http://www.research-horizons.cam.ac.uk/ ... h--p-.aspx
Why would Dr. Compston recommend continued research money be spent for a drug which does not address the neurodegenerative aspect of MS?
The answer to this conundrum, the researchers realised, is that there are two separate processes going on in MS – inflammation and degeneration. Inflammation causes the attacks in relapsing–remitting MS but also triggers nerve degeneration. Eventually, the degenerative component of the disease gains a momentum of its own and continues even in the absence of inflammation, which results in slow progression and the accumulation of disabilities that don’t get better. ‘Until we used Campath-1H in patients, this separation between inflammation and degeneration was not appreciated,’ says Compston, ‘but its implications were obvious. If this drug was going to be of any use to people with MS, we would have to use it much earlier in the disease process than we had so far.’
If this is Dr. Zamboni's model, why have none of his papers to date mentioned hypoxic injury to the brain?cheerleader wrote: Why would he discourage research into a potential CAUSE of neurodegeneration, that being iron deposition and hypoxic injury to the brain? This is the model Dr. Paolo Zamboni is pursuing in venous stenosis and reflux.
That would be a great idea if they had funded the theory in the 80's. After 30 years of silence, when somebody else has done the hard work they come and say "there is not enough amount of evidence and we will help to provide it". Is it that fair?cheerleader wrote:The US and Canadian MS Societies have agreed to fund research into the CCSVI paradigm. Why hasn't the UK MS society? No one is attacking anyone. I just find it strange that the UK MS society can't spare a few pounds for some doppler ultrasounds or MRVs.
And Dr. Compston is the person who came forward as the spokesperson for the MS society and who adamantly stated there was no convincing evidence for CCSVI research in the UK ....he is the one who should be answering questions. In his view, how does the degenerative component of MS continue on without inflammation, exactly? Why not investigate Dr. Zamboni's research and see if there is a link to neurodegeneration? Why not join the US and Canadian efforts?
cheer
Dr. Compston's quote was this:cheerleader wrote:And Dr. Compston is the person who came forward as the spokesperson for the MS society and who adamantly stated there was no convincing evidence for CCSVI research in the UK ....he is the one who should be answering questions.
Where exactly does he say there should be no research into CCSVI?The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.
People with MS are unlikely to benefit from treatments that dilate blood vessels.
So he should drop his research into Campath, which has shown promise for people in the RRMS stage, due to Zamboni's two studies?cheerleader wrote:Why not investigate Dr. Zamboni's research and see if there is a link to neurodegeneration? Why not join the US and Canadian efforts?