Has the UK's MS Society lost the plot?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby ozarkcanoer » 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.

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Postby cheerleader » Mon Dec 07, 2009 3:10 pm

Here's some more on Dr. Compston and his pet project for the last 20 something years....Campath. (should this guy be considering funding new MS research, might there be a slight conflict of interest?)
wrote this up for the FB page this morning.

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.’"
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Mon Dec 07, 2009 3:12 pm

Thanks, cheer... I am currently on Copaxone. If my neuro ever recommends that I take Campath, I will tell him no thanks !!!
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Postby acol » Mon Dec 07, 2009 3:26 pm

I will be drafting a reply to the UK MS Society very soon. I just need to calm down first in order to prepare a more measured response!
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Postby cheerleader » Mon Dec 07, 2009 3:33 pm

ozarkcanoer wrote:Thanks, cheer... I am currently on Copaxone. If my neuro ever recommends that I take Campath, I will tell him no thanks !!!


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.
‘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.

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.
cheer
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http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Mon Dec 07, 2009 3:38 pm

cheer... I am glad you are so levelheaded !! :D :D
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Postby patientx » Mon Dec 07, 2009 3:40 pm

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?

Because his quote was taken out of context. The article goes on to say:
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.’

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.


If this is Dr. Zamboni's model, why have none of his papers to date mentioned hypoxic injury to the brain?


Do people really think attacking neurologists and accusing them of being controlled by big pharma is going to get them to change their minds, or gain more wide acceptance for the CCSVI theory?
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Postby cheerleader » Mon Dec 07, 2009 4:17 pm

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
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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MS societies

Postby Dovechick » Mon Dec 07, 2009 10:36 pm

There are MS societies and MS societies. The UK MS society is as Acol (Nigel) describes very conservative, not very patient friendly and totally unrealistic about the life of MS sufferers. The MSRC (Multiple Sclerosis Resource Centre) on the other hand is much more user friendly and open minded even though the New Pathways magazine is a bit on the lightweight side for my liking.
The New Pathways magazine has published several articles by sufferers about their alternative approaches to living with and treating MS, a couple about the treatment that Sarah (Anecdote) talks about and one that I know of that Wonky wrote about CCSVI. Apart from the fact that this is information that every MS sufferer should be aware of, the fact that they have the courage to publish controversial material says something about the organisation.
Sarah's antibiotic protocol worked for her as it has for a number of others, but it clearly does not work for everyone and that might be due to the physical properties of individual's veins rather than the failure of the Combined Antibiotic Protocol itself, ie the treatment is not working fast enough to prevent the clogging of the veins. For the people whose disease is progressing aggressively something else must be considered, risks and all for what does the future hold for someone who is loosing ground as fast as my daughter is at present. And I am thankful that MSRC is on the ball and courageous enough to report this research and forward thinking enough to involve their readers and MS sufferers in their organisation and publication.
We in the UK have to start shaking the tree, (just watched a re-re-run of Cool Hand Luke) to tell the MS societies, the doctors, the diagnostic industries and the specialists in different fields that we want other theories about MS investigated. Autoimmunity does not make sense to a lot of thinking MS sufferers and their teams. it's about time it was consigned to the scrap heap.
Lastly is it not significant that the only treatment that have made long lasting changes to a significant number of MS sufferers came about as a result of research and investigations by those affected by the disease either directly or as a caring partner to someone affected by it. These treatments, CCSVI, CAP, SWANK have been more significant than the drug therapies aimed at controling the immune system and less damaging to the individual in terms of side effects, and have all been promoted as a result of the work (research, investigation or developement) carried out by someone directly affected by the disease. So maybe the criteria for becoming a neurologist should be that they or someone they care for have MS, then maybe they would think with more focus about the possible causes of this disease. In my darker moment I think that animal models for MS should include a couple of these specimen (neurologists) in the lab rat cages. :evil:
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Postby AndrewKFletcher » Tue Dec 08, 2009 12:59 am

Inclined Therapy?

"This is the first time in our 40 years experience that we have come across
something which actually alters bodily systems to have an effect on MS."
John Simkins, Information Executive, M.S.R.C., BBC Radio Devon, 27 October
1997
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Postby Dovechick » Tue Dec 08, 2009 1:30 am

OK Andrew, I see your address in the post bag of new pathways, January 2002. I did not know about new pathways then as it was just after my daughter was officially diagnosed with MS. It is only since the time I have spent here that I have found out about it. Were you the originator of this therapy?
It has caught my attention and I am looking into it for Ella... Is there another article somewhere that I can look up?
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IBT

Postby Dovechick » Tue Dec 08, 2009 1:50 am

Andrew, Doing a little more research has brought me to electroherbalism and your contribution there. I will investigate possibilities. Thanks.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby frodo » Tue Dec 08, 2009 5:39 am

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


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?

When everything was first presented in the 80's they just ignored the investigation. All the MS societies. And they had the duty of being informed, as they were supported by donations.

Most of them probably didn't even read about the theory. Others didn't bothered even to critizise it. No trial ever appeared to confirm or discard the hypothesis.

And probably this time the same would have happened if we hadn't internet and some people trying to spread the news. Zamboni would have stop publishing things that nobody was reading and everything would be lost a second time.
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Thank God for the internet

Postby Dovechick » Tue Dec 08, 2009 5:52 am

Frodo, could not agree more. The internet has given power to ordinary people, for the first time information is truly power and the computer keyboard is indeed more powerful than the sword or exocet missile. It is up to us now to put pressure on all the societies and the medical profession to get going with this. Time is of the essence, for many people (especially the young sufferers) their life depends on it.
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Postby patientx » Tue Dec 08, 2009 6:57 am

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.


Dr. Compston's quote was this:

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.


Where exactly does he say there should be no research into CCSVI?

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?


So he should drop his research into Campath, which has shown promise for people in the RRMS stage, due to Zamboni's two studies?

For that matter should all other research (stem cells, mab's, oral treatments, etc), be stopped?
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