Stem Cells

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Stem Cells

Postby bromley » Wed Dec 21, 2005 6:06 am

Dear all,

Stem cells are often suggested as being a potential future treatment for MS. One of the UK's leading experts (MS and stem cells is Professor Neil Scolding). The UK MS Society recently held a question and answer session with Professor Scolding - see link below. My questions are under the name Bickley.

Hope it is of interest.

http://www.mssociety.org.uk/application ... _id=101215

Ian
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stem cells

Postby gwa » Wed Dec 21, 2005 12:41 pm

This is a very interesting discussion about stem cells. The doctor seems to indicate that they may be used within the next 2 or 3 years.

I hope that the cells can help us.
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Postby bromley » Wed Dec 21, 2005 1:06 pm

Professor Scolding is one of the top UK MS experts. He was awarded a grant by the UK MS Society to undertake this work. I suspect that in 2-3 years time there will be several trials underway across the UK and overseas. It is interesting to note his views on the stem cell therapies available in countries such as the Netherlands.
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Professor Scolding

Postby gwa » Wed Dec 21, 2005 3:39 pm

Do you know if Professor Scolding has a theory about what causes MS?
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Postby raven » Thu Dec 22, 2005 5:08 am

AFIK he doesn't (he's my neurologist). I remember a conversation with him a while back. We were discussing MS and it's treatments, particularly Campath as he had just agreed to put me forward for the trial. I said something like 'Of course if MS isn't really an auto-immune condition then I'm b*ggered' He gave a little smile and said 'That's the big question isn't it'

To an outsider that may sound like an unhelpful response but was exactly what I expected/wanted to hear. We all know that there are far more questions than there are answers with MS and had he professed to know all the answers then I wouldn't have respected his opinions as much as I do.

For me the cause of MS is a genetic flaw. The trigger may be a single, as yet unidentified pathogen. However it is far more likely to be a combination of triggers/environmental factors that finally cause the immune system to misfire. For some it may be CPn, others EBV, or it could be just blind chance.

At the end of the day, if they come up with effective treatments/restorative therapies then the cause becomes of academic interest only.

Robin
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Postby bromley » Thu Dec 22, 2005 6:49 am

Robin,

Are you on Professor Scolding's waiting list for the stem cell trial?

While I have some sympathy with your view about MS experts - they can't know everything - it disturbs me that the so called experts know very little at all. Cause? No. Auto-immune? No. Prognosis? Can't really say? Many diseases or just one? Don't know.

As Professor Scolding noted in his response to my questions - we've been trying to identify a cause for 50 years.

MS seems to be one of those areas where 'expert' really doesn't seem to be much at all. You need the ability to use a cocktail stick and ask 'can you feel it', send someone for an MRI scan, read the results of the MRI scan, prescribe one of four drugs.

This is not a personal dig at Professor Scolding, and I would worship at the feet of his statue if his stem cell trials came good, but it will be 2006 soon, and I feel all those with degenerative diseases of the CNS have been very much let down.
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Postby mrhodes40 » Thu Dec 22, 2005 9:34 am

If I may be so bold, I do not agree they've ben trying to identify the cause for 50 years. I think they've been trying to identify the "abherrent part of the immune system" for 50 years, and it is this shortsightedness and commitmennt to the autoimmune model that is the problem. Any effort to identify the germ (bacteria virus prion) responsible for this is small, ineffective and limited. The excuse given by my doc ( an "expert") is that they've looked and just can't find anything. Funny how not finding anything means we stop looking when it comes to bugs but not having success with autoimmunity means we try harder. Their perception is that we are so sophisticated and expert at finding germs that of course if we say there isn't one, then we must be right. Never mind that we are still discovering new germs all the time and pleomorphic forms (bacteria that change forms) are only just now coming out of the closet and into the halls of science where people are scratching their heads and saying "wow, wierd, look what this can do" There are many papers every week on the US national database for research on chlamydia pneumoniae. Just last week there were three new ones on how it behaves in the body.

IL-17 is upregulated in MS. SO what? IF we do not know why it is doing this it is moot to find a novel way to stop the body from doing it. Just as an example, IL-17 is upregulated in the body in response to lipoplysaccharide, the part of the bacterial wall left over when a gram negative bacteria like chlamydia pneumoniae dies. It may also be upregulated if EBV is present I do not know of research on that. My point is why not say to oneself "goodness if it upregulates in LPS and we know this (they do because in order to get IL-17 for research what they do is give in vitro lung tissue LPS), then lets look harder for that bacteria" instead of gee let's knock it out this must be the thing causing MS. In order to go with the second thought you necessarily must be commited to autoimmunity. They all are, even if they grudgingly admit it might not be.
I, like you Ian, am THOROUGHLY disgusted. I have been a good patient for 15 years doing everything I was told to do and many harmless alternatives. I can barely walk and barely drive. I told my doc and he said what do you expect? you have MS! like how dare I expect to be able to function. Didn't I realize this is what he expected for years? Indeed how dare I expect to be cured. I'm angry.
Marie
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Postby raven » Thu Dec 22, 2005 11:01 am

If we suddenly identify an infectious cause what then? There is every chance that it's a ubiquitous bacteria/virus that is benign in 99.99% of the human population. The problem is not the pathogen itself but the immune response to it. If we clear the pathogen how do we stop re-infection?

MS is NOT an infectious disease. I cannot pass it on to my wife, children, cat, etc. Whatever the trigger, the fault lies with my genetic make-up.

I may be in a minority but I'm grateful for the progress that researchers have made since my diagnosis.

Robin
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Postby Jaded » Thu Dec 22, 2005 11:38 am

Marie, of course you are angry - you have every right. This is a horrible disease.

Robin, if they do identify an infectious cause then at least the research can be focussed and there is a better chance of success. At the moment they are looking at 500 diffferent things - just look at the list of trials! It's hit and miss.

Professor Scolding's answers on stem cells is good news - it's about time. Well done on posting the questions Ian.

We need some definitive progress in 2006.

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Postby bromley » Thu Dec 22, 2005 1:14 pm

Robin / J / Marie etc

Lets hope that 2006 brings some good news.

As I've said before, this is (from my experience) a very difficult disease to deal with. I (and all those with it) are, in effect, being asked to watch ourselves physically and mentally deteriorate. There's a profile of a woman on the NMSS site who has had MS for 35 years, and has been a paraplegic for the last seven. This scares the pants of me. Like many, I imagine I have a list of areas where I will not be going (although I'm sure that when / if I get there, I may revise that list).

I must come across as a very self-centred SOB, but my basic philosophy is that you get one life and we've ended up with, in my view, one of the grimest diseases during some of our peak years - one only has to look at Richard Pryor to see this. I heard today that the 21 year old daughter of friend has just been dx with MS, which hit home - a potentially devastating disease which affects the young.

Maybe I am alone in this, but this wretched disease plays on mind every second of the day. I just want rid of it or at least to know that it has been halted. I just want my old life back - and my only hope of achieving this is through research which leads to better treatments.

Enough of the sob story - we are all in this boat together and no doubt have different ways of coping with it. But life must be more than 'coping'.

The future does look much more promising and I would hope that in 3-5 years time we might be told that this disease can be contained (or the damage it does) and that some repair might be possible. It's just really frustrating that it seems so close but is just out of reach.

So at the New Year's Eve party, at 1201am, I will, no doubt, think about what the coming year holds. We must be due some good news soon after the disappointments in 2005. I have a sneaking suspicion that 2006 will bring some cheer (although don't sue me if I'm wrong).

In the meantime, keep popping those abx, ldn, fish oil capsules, glucosamine etc or whatever else takes your fancy. Some day we will rid ourselves of this curse.

Ian
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Postby Katman » Thu Dec 22, 2005 1:48 pm

..
Last edited by Katman on Thu Dec 22, 2005 1:54 pm, edited 1 time in total.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Katman » Thu Dec 22, 2005 1:49 pm

I am PPMS. For 15 months today I have been "popping abx" and supplements as listed on David Wheldon's selfless site and I can walk, talk, and stay up all day. I have not fallen down for at least 8 months. I could go on an on about what I CAN do - ME . My husband is a wonderful pediatrician and is amazed at what I can do. All my life people have said "That has never been done before" or "You can't do that" or the worst "You can't do that- you're a girl". The world does not come to you- you have to take responsibility for yourself, especially if you have MS.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby SarahLonglands » Thu Dec 22, 2005 4:30 pm

Rica, you are the best!

I have been "popping" abx, fish oil, NAC and whatever else for the last thirty months, now, on and off, and have completely halted my aggressive SPMS. That is what taking responsibility for yourself means, so Bromley, stop being a self centred SOB and come back on board! You owe it to your family.

Sarah :(

Edited because I can't count at this time of day!
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby JFH » Fri Dec 23, 2005 4:00 am

Back to Stem Cells ! :)

Ian, here's one researcher you can really bash !

Research by South Korea's top human cloning scientist - hailed as a breakthrough earlier this year - was fabricated, colleagues have concluded.

A Seoul National University panel said the research by world-renowned Hwang Woo-suk was "intentionally fabricated", and he would be disciplined.

Dr Hwang said he would resign, but he did not admit his research was faked.

"I sincerely apologise to the people for creating shock and disappointment," he said after the panel's announcement.

"As a symbol of apology, I step down as professor of Seoul National University."

However he maintained that the science behind his work was sound, and that his country's scientists were still leading the field.

"I emphasise that patient-specific stem cells belong to South Korea and you are going to see this," he said.

Proponents of human stem cell cloning say it could one day help cure diseases including diabetes and Parkinson's. [and MS of course JFH]

The controversy has been causing shockwaves in South Korea, where the cloning pioneer is widely considered a national hero.

Since 2002, he has received $40m (£23m) in grants from the science and technology ministry alone.

He made news around the world when he announced in August that his team had created the world's first cloned dog.

The veracity of that research, as well as an earlier paper on the first cloning of a human embryo, will now be subject to review by the same panel, says the BBC's Charles Scanlon in Seoul.


In May, Dr Hwang published a paper in the journal Science, saying his team had extracted material from cloned human embryos that identically matched the DNA of 11 patients. It was claimed such a technique could be the key to providing personalised cures.

But the university panel said that all 11 sets of data were derived from only two stem cell lines. The panel said it still did not know whether those two stem cell clusters had actually been cloned.

"Based on these findings, data in the 2005 Science journal cannot be regarded as a simple accidental error but as intentional fabrication made out of two stem cells," the investigators said.

"This is a serious wrongdoing that has damaged the foundation of science," it said.

"Professor Hwang admitted to having played a role in extending the data of the two stem cell lines to those of 11 stem cells," Roh Jung-hye, the university's dean of research affairs, told a news conference.

Dr Hwang came under pressure when one of the co-authors of his paper, Roh Sung-il, said that some of the pictures illustrating it, apparently showing the 11 patient-specific stem cell lines, had been faked.

He said photographs of nine of the lines were doctored from the other two.

Last week, Dr Hwang admitted the photographs did contain "mistakes", but insisted the research was accurate and that he had cloned 11 stem cell lines.

Scandal erupted around the doctor a month ago, when he was forced to step down as chairman of South Korea's World Stem Cell Hub, after admitting that eggs for research were donated by his own female colleagues, in breach of guidelines.

He was admitted to hospital earlier this month suffering from stress.
Stress! Ye Gods!! After recieving $40m :evil:

http://news.bbc.co.uk/1/hi/world/asia-pacific/4554422.stm
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Postby bromley » Fri Dec 23, 2005 4:42 am

Sarah,

Apologies - my rant was not against the abx regime. I was merely pointing out that lots of us are taking different things because the experts don't have anything to offer us which is tried / tested / proved to be effective. I would love to see CPn be proved as the cause given that you have tested a regime which has been so beneficial.

I wish you continuing improved health.

Have a good Christmas.

Ian


JFH,

I saw the article about the South Korean scientist. This year has not been good for MS - Tysabri withdrawn, death on Campath trial, a death on the early Sativex trials, and the promised land of stem cells doesn't look as advanced as we might have hoped. 2006 really can't get any worse in terms of bad news.


NHE,
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