Discussion of Stem Cell Research and Treatment

0 Kudo

Author	Comment
squiffy2	Discussion of Stem Cell Research and Treatment	Lead	[-]
Posts: 26122 (09/12/05 14:38) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Tags : None Welcome to this thread, which will remain as a permanent thread for the discussion of the pros and cons of Stem Cell Research and Use. Please feel free to post your thoughts, concerns etc. to do with Stem Cells on this thread, all I ask is that everyone treats others comments with respect. squiffs. Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
Robin	Re: STEM CELL DISCUSSION THREAD	#1	[-]
Posts: 85 (09/12/05 16:36) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I'm not sure that a sticky thread is the answer. Discussions tend to be 'of the moment' and on very diverse aspects of stem cell treatment. But it's not a big thing for me either way. I'm strugglng with the whole tissue rejection issue of cord blood cells at the moment. The stem cells themselves do not display HLA markers obviating the need for HLA matching (according to the companies). My problem is that if these cells differentiate into adult cells (which is the desired result isn't it?) then they will display HLA markers based upon the DNA of the donor rather than the host. At this point the host immune sytem will destroy the cells. This is obviously not the whole story because the news item is based upon the fact that 2/3 of the population can be covered by about 150 selected cell lines. At the moment I can't find any information as to why this should be but will keep looking. Anyway it seems a lot more complex than the glib assertion from the companies that cord blood cells do not need HLA matching. Robin
squiffy2	Cell bank requires fewer samples	#2	[-]
Posts: 26122 (10/12/05 17:42) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	The UK Stem Cell Bank could be well stocked by samples from as few as 150 random human embryos, say scientists. Stem cells from these embryos would be enough to provide a good tissue match to two-thirds of the population. The University of Cambridge team say in theory just 10 embryos would be enough for a viable bank - if they had exactly the right genetic make-up. Embryonic stem cells, which can become many kinds of mature tissue, have the potential to treat many diseases. But opponents say the stem cell debate is raising "false hope" among "desperate patients". For full story please go to MSRC: MS Research News : Stem Cell Research and Treatment Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." . walker9 Registered Member Posts: 1057 (9/12/05 8:00) Reply \| Edit \| Del Re: Cell bank 'requires few samples' -------------------------------------------------------------------------------- on the news this morning it said its becoming more viable as a future treatment laurie Robin Registered Member Posts: 501 (9/12/05 8:3 Reply \| Edit \| Del Re: Cell bank 'requires few samples' -------------------------------------------------------------------------------- Interesting, research such as this indicates that embryonic stem cells do need to be HLA matched to recipients. Companies such as ACT offering cord blood implants state that HLA matching is not required. More questions, no answers.. squiffy2 Administrator Posts: 10191 (9/12/05 12:02) Reply \| Edit \| Del Re: Cell bank 'requires few samples' -------------------------------------------------------------------------------- My thoughts exactly Robin, having come froma "transplant" background, I couldn't get my head around the stem cell transplant NOT being tissue matched. Recipe for disaster. Another pointer to the use of "self" stem cells, and not Embryonic, which I couldn't morally or ethically use,no matter how ill I was. Personal opinion only, not an MSRC one I should state here and now. squiffs Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." . tiddlepooch Registered Member Posts: 3722 (9/12/05 12:51) Reply \| Edit \| Del Re: Cell bank 'requires few samples' -------------------------------------------------------------------------------- For various reasons this is a topic that really interests me at the moment and I dont know if its just me.... but i'm finding it really frustrating that no one will come out and discuss what have to be the VERY many views on it.... On the one hand we have those who have either had it done or are planning to have it done who wont hear a negative thing about it.... or we have link ups to articles that really dont answer many of the questions i know i have on the subject. I know the answers to the benefits/risks of stem cells is still unknown but surely by throwing around different views, arguements and thoughts it would help people to find the questions they really should be asking themselves before embarking on this .......or is it just me thats bewildered by it all...????? jules "He is able who thinks he is able" squiffy2 Administrator Posts: 10200 (9/12/05 13:37) Reply \| Edit \| Del Re: Cell bank 'requires few samples' -------------------------------------------------------------------------------- Hi Jules, I agree with you. So, I will "Stick" a new thread on here for Discussion of Stem Cell Research and Use" Please can everyone use that thread to discuss the pros and cons of Stem Cells, and we'll keep the main already "Stuck" thread at the top pf the page for Research News> Hope that makes sense to everyone? squiffs Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." . << Prev Topic \| Next Topic >> Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
Robin	Re: Cell bank requires fewer samples	#3	[-]
Posts: 85 (10/12/05 20:56) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Some more information if anyone is interested. Although by the stunning lack of discussion so far perhaps you aren't It appears that for a cord blood transplant it is felt that only 4 of the 6 HLA antigens need to be matched. *Quote:* Another consideration for doctors when trying to determine the best cord blood match for a patient is the number of identical Human Leukocyte Antigens (HLA) between the patient and the blood. HLA is a type of protein that is found on the outer surface of a cell. It consists of six groups of different antigens. Of these six groups, three are considered the most important in matching for a stem cell transplant. These are HLA-A, HLA-B, and HLA-DR. Each group is made up of two antigens, one from each parent. Therefore, doctors need to match a patient on six antigens. A perfect match is referred to as a 6/6 HLA match, although doctors may do a bone marrow transplant if a patient is a 5/6 HLA match. However, with cord blood stem cells, a transplant can be done even if the recipient is a 4/6 HLA match. This is because the stem cells found in umbilical cord blood are not as mature as those stem cells found in bone marrow. Due to their immaturity, cord blood stem cells are less likely to attack a patients immune system, making a 4/6 HLA match more acceptable for a transplant. Reading between the lines, particularly when they refer to the stem cells attacking the host immune system, it appears that they are talking about an infusion of whole cord blood [including leukocytes] rather than just stem cells themselves. It should also be pointed out that the above paragraph really relates to leukemia patients who are particularly at risk of GVHD as their own immune system will have been ablated prior to transfusion. Given that due to the immaturity of the stem cells only a 4/6 match is needed rather than a 6/6 match then the 150 cell lines covering 2/3 of the population makes a little more sense. Even the 10 specially selected lines, as with certain blood types the 'universal donor' concept probably applies to some of the class 1 HLA antigens. Having said that, I still cannot see that the assertion from ACT and others that HLA matching is not required makes any sense other than a commercial one.... For those that are not familiar with HLA antigens and their significance there is a primer here p.s. Is anyone really interested in this or shall I just shut the **** up?
tiddlepooch	Re: Cell bank requires fewer samples	#4	[-]
Posts: 3860 (10/12/05 21:46) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	*Quote:* Is anyone really interested in this or shall I just shut the ** up? I'm interested...!!!! Just still trying to get my head around it all $:\$ Quote:** I still cannot see that the assertion from ACT and others that HLA matching is not required makes any sense other than a commercial one.... No kidding!!!! but what i'm having trouble with is the fact that stem cells are supposed to repair/replace areas of damage which is all well and good and the theory makes sense .... although from what i've come across so far everything points to the fact that a delivery method has yet to be determined where the transplanted cells would survive long enough to reach their targeted areas... the big question then surely has to be assuming some form of repair 'did' take place if the cause of the damage is'nt dealt with then the damage/repair scenario becomes a permenant on going thing and the need for stem cell treatments would be never ending.??? Also how can anyone be sure that the stem cells themselves are actually doing much of anything... i cant find anything that shows anyone having had the treatment showing changes on MRI's etc or am i completely missing the point...? Is'nt it possible that all the other gobbledygook that gets injected into the body along with the stem cells is whats actually giving people that boost feel good factor and possibly improving things completely unrelated to, in this case, their MS....??????? And if matching is'nt done won't the body just attack the foreign cells as soon as it finds them.... Surely considering the number of cases of people with MS who have had this treatment and are claiming such improvements from it... if this is the case then their neuros must be intrigued enough to have tests done to see just what if any physical benefits have been obtained..??? jules.... still very confused by the whole thing!!!!
Wizzie2	Re: Cell bank requires fewer samples	#5	[-]
Posts: 2615 (10/12/05 23:06) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I have to admit this HLA stuff is going over my head although I can understand the theory that like with any other transplant a certain amount of matching would logically be needed. What ACT says is *Quote:* Purified and potentiated cord blood stem cell (PP-CBSC) therapy involves the use of proprietary protocols to remove the white and red blood cells from cord blood, leaving only stem cells. This process negates the risk of GVHD and the need for HLA matching *Quote:* Because ACT cord blood stem cells are composed of primitive cell types devoid of HLA markers or white blood cells, there is no risk of immune reaction, rejection or GVHD Ive no idea if that means owt or if its just bull**** but their stats say that 80% of patients have at least a certain amount of improvement from the treatment and as we all know there have been some quite well publicised cases in the news. I dont know enough to have a strong opinion either way but if matching really is important then how are they supposedly acheiving these results and supposedly no side effects being reported? $:\$ Yours very confused Lizzie x
squiffy2	Re: Cell bank requires fewer samples	#6	[-]
Posts: 26122 (10/12/05 23:51) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Robin, I welcome your input into this very complicated subject, the lack or "response" from peeps shouldn't be misconstrued as apathy, in a lot of cases people are really busy at the moment, or, like some others are taking their time to get their heads around it, not everyone comes from a Transplant background, such a s myslef, so some will take time to come to terms with HLA mismatches and the like. Hence this thread to help blow away some of the "mist" but also to stimulate people, who are interested. I see this thread not only being informative, but also a place to give people a chance to debate, sensibly, the moral and ethical issues that some sorts of stem cell research ad treatment raise. Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
Robin	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#7	[-]
Posts: 85 (11/12/05 11:18) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Lizzie, In discussing the HLA matching of cord blood stem cells I'm not implying that these things do not have a positive effect. I am reasonably certain though that the benefit is not as one would suspect from the engraftment of the cells i.e. the cells producing new tissue. I have two major reasons for this assumption. The first is the HLA matching issue. Unless a good match [possibly 4/6?] is achieved these cells stand no chance against the host immune system if they do differentiate. The second is purely empirical; reports from patients who have undergone these procedures state that they have felt benefits within a matter of hours. If the benefits were from the formation of new tissue then benefits would not be felt for a much longer period than that. Certainly in the order of weeks. Just because these cells are not forming new tissue does not mean that they are not having a beneficial effect. Given the timeframe discussed above this benefit is much more likely to be a chemical one. It is perfectly feasible that these cells release growth factors and other hormones that modulate the disease process. There is some evidence to support that position here The above extract, despite talking about treatment of stroke describes these cells modulating the inflammatory response and providing neuro-protection. Both of these would be beneficial for MS patients. This would also explain patients needing re-treatment at periodic intervals. I have no idea whether the cells, once implanted, would continue to undergo mitosis and replicate. However it's fairly likely that even if they do, their numbers would in a matter of time decline to zero due to the actions of the host immune system. It's my honest opinion that someone undertaking this treatment would receive some benefit. Although the level of benefit would very wildly with each individual. I also belive that to sustain this benefit the recipient would need periodic re-treatment. Tiddles... Does that answer any of your questions??? Robin
tiddlepooch	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#8	[-]
Posts: 3860 (11/12/05 12:19) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Oddly enough it did *Quote:* Once thought of as "cell replacement therapy," we now propose that cord blood treatment in stroke reduces inflammation and provides neuroprotection. Both of these components are necessary for effective therapy This finally makes sense and explains the almost instantenous recovery that recipients keep reporting (the one thing that has left me dubious about the whole process) However, I still dont see how its possible for stem cells to do what it is hoped they will eventually do which is repair/replace area's of damage if the cause of MS remains unknown and therefore not removed... With Campath i do understand the principles of nuking all the cells and hopefully eradicating the 'bad' ones ... i also understand the need for follow up doses to eradict any cells missed in the nuking and not allowing those time to multiply to cause trouble (i know thats a very simplified view of it but its early and i'm still on my first coffee and keep getting kicked off the board!) But as far as i'm aware with stem cells its a question of infusing the cells to go in and repair/replace areas of loss or damage ... yet if the cause of the MS remains then surely this will never be more than a band aid (plaster) on the problem...or is the idea that the cells constantly keep doing a job of replace/repair...????? Tiddles who will keep you busy with this till it eventually sinks in......
Robin	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#9	[-]
Posts: 85 (11/12/05 13:00) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	You're not wrong Tiddles. Unless you stop MS before stem cell treatment then it will just be a band aid. Although given the time that most take to progress to significant disability it would be a pretty good one. Another fly in the ointment is that one of the most important haplotype blocks for a successful HLA match is the HLA-DR group. Guess what? One of the major markers for MS susceptibilty is the HLA-DRB1 haplotype. So a successful HLA match invariably will result in the infusion of cells that are already susceptible to MS... Bummer said Dougal! www.nature.com/ng/journal/v37/n10/abs/ng1647.html
Robin	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#10	[-]
Posts: 85 (11/12/05 13:23) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	To highlight the need to stop MS before applying regenerative therapy I have copied below a section of an article from Nature. Note the reference to 'friendly fire' *Quote:* To give such cell-based strategies the best possible chance, it will be imperative to reduce the risk that newly formed myelin-producing cells will be targeted in another round of friendly fire2, 9. But on both fronts in silencing the autoimmune attacks and in repairing the brain damage there is, I believe, good reason to be optimistic. Many attractive methods for dampening the autoimmunity that is characteristic of multiple sclerosis are under development. These include broad-scale tolerization with myelin-derived peptides2 and with genes encoding myelin proteins2, 3, 9. They can perhaps be combined with well-known drugs such as statins, which have recently been shown10 to be extremely effective in suppressing autoimmunity. It should be feasible to stop collateral damage. And once the immune system has been made to surrender, the molecules at fault can perhaps be turned to help promote rehabilitation. If sufficient numbers of human neural precursor cells can be collected, and if we can work out how to make these cells proliferate and differentiate, then the results of Pluchino et al. might be translated into a treatment that eliminates collateral damage in multiple sclerosis I cannot post a link or the whole article. As a subscriber to Nature I can access it, but it is protected and copyright.
Wizzie2	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#11	[-]
Posts: 2615 (11/12/05 13:48) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Robin Sorry I think it was just me making the wrong assumptions from whats been said I know nowt about matching, rejection etc so when it was mentionned that the immune system could/would attack the implanted cells I just assumed that meant there would be negative physical consequences. Lizzie x
tiddlepooch	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#12	[-]
Posts: 3860 (11/12/05 14:15) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	*Quote:* Another fly in the ointment is that one of the most important haplotype blocks for a successful HLA match is the HLA-DR group. Guess what? One of the major markers for MS susceptibilty is the HLA-DRB1 haplotype. So a successful HLA match invariably will result in the infusion of cells that are already susceptible to MS... Bummer said Dougal! That's a big fly $:\$ I need to work my way through one or two things then will be back to pick your brains some more...... jules
squiffy2	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#13	[-]
Posts: 26122 (11/12/05 16:05) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Lizzie *Quote:* the immune system could/would attack the implanted cells I just assumed that meant there would be negative physical consequences. My feelings exactly, and I am still not convinced that this would not be the case unless a full HLA match was made. Another concern that has not been addressed is how these cells are "switched" on and off (to use simple laymans terms). If they have a short "life" within the body then all well and good but if they continue to grow/multiply the issue of cancer does raise it's head, hwtais to stop them growing "in the wrong place" or to continue to grow where they should? I feel we need an awful lot of clinical trials and review before this treatment can be shown to be "safe". If the cells do have a low life expentancy, and the underlying "cause" of the MS is not corrected,then as has already been said, they are no more than a sticking plaster, and are at best a short term "fix" and in no way a "cure". As always with this subject these comments are purely personal and do not reflect those of the MSRC. squiffs Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
Wizzie2	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#14	[-]
Posts: 2615 (11/12/05 16:20) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Squiffy The issue of cells reproducing is something else that does concern me. I recently read an article about stem cell use as a cosmetic surgery procedure (no Im not getting premature wrinkles just yet ) But this article was about a very dodgy sounding russian clinic that uses embryonic stem cells. The article did mention that embryonic stem cells can potentially reproduce exponentialy or whatever and therefore theres a risk of tumours forming. The article also mentionned that adult stem cells dont reproduce at all. Ive probably just got confused and even more likely looking at this in a far too simplified manner but say theres a scale of how stem cells reproduce where does that likely put cord stem cells? $:\$ Lizzie x
squiffy2	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#15	[-]
Posts: 26122 (11/12/05 17:02) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Lizzie, No idea but will do some "digging" when I get a quiet time Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
Wizzie2	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#16	[-]
Posts: 2615 (11/12/05 17:07) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	cheers me dear Lizzie x
Robin	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#17	[-]
Posts: 85 (11/12/05 17:16) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I think the chances of GVHD are practically non-existant. According to the bumpf these companies put out, all leukocytes have been removed before implantation. In addition the host immune system has not been suppressed in any way. If by some miracle these cells did decide to take a pop against a fully working immune system then it would be equivalent to leichtenstein declaring war on the USA... No contest! By the same token if the immune system decides to attack the foreign cells then it shouldn't really be a problem either.. Who's gonna miss Leichtenstein? Apologies to any board members who hail from there... Whoever said that adult stem cells do not reproduce is plain flat wrong! Where do they think that red blood cells come from? The point is that adult stem cells are far more specialised and can only make certain types of tissue. The cord blood cells are described as pluripotent which means that they can become a wide range of tissues (under the right conditions). I personally feel that the chances of these things developing into a tumor are extremely low. Firstly, because they are not HLA matched they would get nuked by the host immune system as soon as they turned into anything interesting. Secondly the human body deals with cancerous cells every day. Assuming that the DNA of these cells has not been severely damaged by the implantation process then they should pose no more risk of a tumour then any other mitotic cell in the host body. As usual my standard caveat applies. My opinion only, based upon my interpretation of the best information I can get hold of but may well all be total cobblers
squiffy2	Re: Discussion of Stem Cell Research and Use - Permanent Thr	#18	[-]
Posts: 26122 (11/12/05 17:44) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	*Quote:* By the same token if the immune system decides to attack the foreign cells then it shouldn't really be a problem either.. Apart from the fact someone has shelled out their life savings (no pun intended ) on the treatment........... I personally would not consider this treatment, myself, until a hell of a lot of more research has been done, and also until longterm studies have been carried out - we need to know what might happen over 5 or 10 years really to get some idea of the "perspective" consequences of this treatment. Guess it comes from 30 years in the Pharma industry and seeing too many "wonder drugs" end up causing untold misery etc. over the long term. As always with this subject these comments are purely personal and do not reflect those of the MSRC. squiffs Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
squiffy2	Previous Stem Cell threads and discussions	#19	[-]
Posts: 26122 (12/12/05 19:22) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	As I am rationalising the Stem cell threads and pulling all relevant information out into the main MSRC site under the Stem Cell Research and Treatment section, I thought it would be prudent to post here the threads so as they are not lost. Stem Cell Treatment -------------------------------------------------------------------------------- I have collected together all the posts from the "Stem Cell Treatment" thread started by Laurence on 11th October 2005, and add them here. squiffs ************************************* lfinestone Registered Member Posts: 4 (11/10/05 12:5 Reply \| Edit \| Del All STEM CELL TREATMENT -------------------------------------------------------------------------------- Hi all. I trust you have all read the articles in Pathways about ACT and their Cord Blood Stem Cell Treatment. This proves what we in Spotlight LDN knew from reports on treatment and talking with ACT about their treatment told us. It is now possible for members of this message board, together with members of Spotlight LDN to form groups to get a group discount from ACT for the Stem Cell treatment. We have to act quickly to get the group discount and if you are interested now after reading the reports then please contact me at: lfinestone@aol.com and I will ensure you are included in one of our groups. If you do contact me to be in a group, please let me have a note of: NAME ADDRESS PHONE NUMBER EMAIL ADDRESS TYPE OF MS AND ANY PROBLEMS. Regards Laurence (Spotlight LDN group moderator) HelenMSRC Administrator Posts: 2089 (11/10/05 15:44) Reply \| Edit \| Del ezSupporter Re: STEM CELL TREATMENT -------------------------------------------------------------------------------- Hi Laurence, I am a little unhappy about your posting and need to clarify why. It has been speculated previously (here and elsewhere) that you are in a position where if you 'recruit' enough people for the treatment you, personally, will receive a discount and/or free treatment. I think it is very important for you to clarify your personal position here. I am also concerned that you use the phrase Quote: -------------------------------------------------------------------------------- We have to act quickly to get the group discount -------------------------------------------------------------------------------- Why? I would not think anyone would want to act in haste on such a serious matter as undergoing Stem Cell Treatment. Helen walker9 Registered Member Posts: 924 (12/10/05 7:34) Reply \| Edit \| Del Re: STEM CELL TREATMENT -------------------------------------------------------------------------------- on tv today theres been a article on a trial on people with heart problems who are doing well from sten cell treatment. One dr said the downside is that the drug companies are less than happy as it could start diminishing the need for drugs should stem cell work be accepted as the best therapy. laurie lfinestone Registered Member Posts: 5 (12/10/05 11:20) Reply \| Edit \| Del Stem Cell Treatment -------------------------------------------------------------------------------- Here we go again. Helen, I really thought that we had put all this behind us before. I have posted all this before on Spotlight LDN and here but here it is again: Firstly, I personally receive no financial benifit or discount on treatment from ACT. In fact I have now had 2 treatments of Stem Cells by EmCell in Kiev which is nothing to do with ACT, and I certainly don't need any more for some time even several years. My only point in doing this is because I have been so pleased with the benifits I have had from the Stem Cell treatment that I want to help others to find out as much as they can about Stem Cells, and to get the treatment. It really is important now if people are interested and have done as much research as I did (which is why I was very happy to go to EmCell) to act quickly, as ACT have said they will offer a group rate to groups from Spotlight LDN up to the end of 2005. What will happen after that I do not know yet. So, I thought that as well as the interested parties in the over 500 members of Spotlight LDN. I would post here and see if anyone here would like to join one of Spotlight LDN's groups to get the group discount from ACT. Cord Blood Stem Cell treatment by ACT is now a well documented treatment and one that has been had by a lot, with no bad effects. The treatment has a grerat deal of information about it on the Internet and I am having had it myself am very happy to recomend it to others. Stem Cell treatment is NOT a cure for MS but it certainly helps a great deal with symptoms. For me the fastes benifit was my Eyesight which is now 95% better than it was. Many other things are improving. My general feeling and streangth is much better than before the Stem Cell treatment, one of the most noticable improvements is to speach which in my case is now 100% better than before. I could go on but I hope this has put my involvement in context and satisfied your wories. Regards Laurence. HelenMSRC Administrator Posts: 2091 (12/10/05 16:19) Reply \| Edit \| Del ezSupporter Re: Stem Cell Treatment -------------------------------------------------------------------------------- Thanks Laurence. That does, indeed, clarify your position. Helen Bally Registered Member Posts: 1 (12/10/05 16:2 Reply \| Edit \| Del Re: Stem Cell Treatment -------------------------------------------------------------------------------- How can you 'recommend' either ACT or corded stem cell transfusion Laurence when you yourself have had treatment with Emcell (and not ACT), and have said as much? For those who don't know, Emcell provides embryonic/foetal stem cell transfusion, not corded. This in itself begs the question - why are you selling - sorry, advocating - ACT's services but receiving treatment through another company? Further, I too object to your using this and other boards to attract business. You say to act 'quickly' - if that's not sales pressure, I don't know what is. You go on to say that you are not receiving a kickback from ACT - I beg to differ. I have spoken with ACT themselves as have MSRC and 'group discounts' which are based on obtaining a certain quota reflect back on you - which is why you want people to sign up through LDN. There is nothing wrong with receiving a commission, as long as you're up front about any vested interest you might have. Both ACT and you are legally - not to mention morally - obliged to declare third party interests and commissions, particularly when asked. As for ACT - they are turning into a monkey outfit. They say one thing and do another. They charge different people different prices. They say they're running trials, then when asked, they say they're not. They do not keep telephone appointments. They botch up actual stem cell appointments for treatment. If this is what can be said of their professionalism, what can be said for their treatment? This stem cell business is just that, a business. These people are not in it for altruistic reasons - neither are the other firms, be it Emcell, IRM, Medra or a host of other clinics which have been springing up of late. I'm not saying it works. I'm not saying it doesn't work. But we're talking a lot of money here and it's not fair to mislead people as to its efficacy if the treatment is still so new and untried. Reputable and renowned organisations, including the NIH are suggesting caution if not downright wariness when it comes to paying for and undergoing stem cell treatment. If SCT were the be all and end all it's being made out to be, then why are reputed doctors and scientists advocating caution? You are not in a position to 'recommend' ACT Laurence, as you've never received treatment FROM them. Bear that in mind next time you tout their services. tiddlepooch Registered Member Posts: 3603 (12/10/05 17:37) Reply \| Edit \| Del Stem Cell Treatment -------------------------------------------------------------------------------- Quote: -------------------------------------------------------------------------------- As for ACT - they are turning into a monkey outfit. They say one thing and do another. They charge different people different prices. They say they're running trials, then when asked, they say they're not. They do not keep telephone appointments. They botch up actual stem cell appointments for treatment. If this is what can be said of their professionalism, what can be said for their treatment? -------------------------------------------------------------------------------- Considering that there are people on this and other boards that are seriously considering this option and possibly this 'deal' can you clarify Bally if this has been your own personal experience or hearsay from others... many thanks jules lfinestone Registered Member Posts: 6 (12/10/05 18:5 Reply \| Edit \| Del Stem Cell Treatment -------------------------------------------------------------------------------- Bally, 1) I think I have had about enough of trying to help! 2) I AM NOT GETTING ANY SORT OF FINANCIAL BENIFIT OR DISCOUNT FROM ACT FOR TELLING PEOPLE ABOUT THE STEM CELL TREATMENT OR ACT. My answer to Helen should have explained why I am doing this. 3) I would have hoped that after the very good article about ACT that appeared in Pathways and on this board that you woul see that actualy ACT are quite good! They are so busy that they are expereincing some minor admin problems but are sorting it. There have been very good reports from people who have had their treatment! 4) I am happy to recomend ACT because I have had much talk with them and indipendant medical sources regarding their treatment. I am aslo happy to recomend any one to have the treatment as it has done me such good. 5) I have no intention of continuing to speak about the benifits of Stem Cell treatment on this board wether Embryonic or Cord (They are both good). If any one on this board wants to join a group from Spotlight LDN to get the group discount then Email me privately. BYE tiddlepooch Registered Member Posts: 3604 (12/10/05 19:15) Reply \| Edit \| Del STEM CELL TREATMENT -------------------------------------------------------------------------------- ummm... having been in all the wars I want to I have to say I dont relish getting in the middle of this one... however, my original question still stands and the fact that there is so much at stake for those contemplating this option I think its VERY reasonable for a certain amount of healthy questioning/ skepticism to be raised. I have no idea what the history is between Ifinestone and Bally if any! But do feel as you've both posted such strong statements its only fair you both agree to answer any questions put forth... not to do so is unfair to others who may be considering going this route but have yet to make their minds up.... It is a big decision and not one to be taken lightly so to refuse to discuss it further seems a little churlish.... jules edited due to spelling Edited by: tiddlepooch at: 12/10/05 19:18 Robin Registered Member Posts: 473 (12/10/05 19:39) Reply \| Edit \| Del Re: STEM CELL TREATMENT -------------------------------------------------------------------------------- I'm not going to get into the argument over whether ACT is a reliable company or not, I have no information either way. I do however have a couple of questions that anyone seriously considering the treatment should ask. The assumption is that the implanted stem cells will somehow begin to repair the damage caused by MS. Unless the original cause is isolated and somehow treated isn't it a little like replastering the ceiling without fixing the leaky roof? There appears to be some confusion about whether the implanted cells would be rejected by the host. This is a quote from the international society for stem cell research. Quote: -------------------------------------------------------------------------------- The use of umbilical cord blood stem cells for other uses, such as organ and tissue repair, is under investigation. However, the stem cells themselves would be recognized as foreign and rejected the same way as a transplanted organ, unless the patient's immune system is strongly suppressed, or has been ablated before transplantation, such as is the case prior to bone marrow transplantations. -------------------------------------------------------------------------------- www.isscr.org/public/adultstemcells.htm I myself am very much on the fence when it comes to the currently available stem cell treatments. On the one hand they seem to offer tremendous potential. On the other there are so many unanswered questions that the companies providing these treatments need to be able to answer effectively. Anecdotal reports of benefits are simply not sufficient, particularly with a variable condition such as MS. If I were seriously considering this treatment (and spending a considerable amount of money) I would want a valid answer detailing how exactly this treatment would be expected to help my condition. If the company concerned cannot answer in sufficient detail, then it's probably not a good bet. Robin "Purgamentum init, exit purgamentum." -- Garbage in, garbage out. tiddlepooch Registered Member Posts: 3605 (12/10/05 21:24) Reply \| Edit \| Del STEM CELL TREATMENT -------------------------------------------------------------------------------- Thanks for that Robin..... squiffy2 Administrator Posts: 9134 (13/10/05 9:1 Reply \| Edit \| Del Re: STEM CELL TREATMENT -------------------------------------------------------------------------------- I'd like to join in this debate, but as an MSer NOT as an employee of MSRC, as MSRC is, as usual, totally neutral on this as any other treatment, and rightly so. All MSRC do is provide the facts on any and all treatments etc. giving people an informed choice, where this is possible. It is then up to the person to make their choice, after researching ALL the facts they can get. With STC, putting aside the whole debate between Laurence and Bally, which appears to have spread here from elsewhere, and really should be taken off line IF you both are not prepared to answer questions raised by members of this message board. One has to ask yourself - Has this treatment been proved to be safe IN THE LONG TERM? To date I am not aware of any long term Safety Evaluation clinical studies being carried out or completed over 1, 3, 5 or 10 years. If someone is aware of any, I would love to see the clinically proven data on the safety of this treatment. People should also be concerned with the clincial reporting of efficacy of the treatment (how well it works) again, I can find no records of Clinically Studies studies proving the efficacy of this treatment. If this was a "normal" pharmaceutical drug this treatment would have to go through the whole remit of Pre-clinical (animal) studies, Phase 1 (in healthy volunteers) Phase 2 - to show the safety of the treatment in "patients" and full blown multi centre - multi country Phase 3 Safety ANDefficacy studies. These would then have to be reported to the Fedral Drug Administration (FDA) and it's European Counterpart BEFORE anyone could actually start the drug/treatment etc. Now, as far as I can see NONE of this clinical testing has been done. Now let's ask a few pertinent safety questions: 1. It has been clearly stated by the STC companies that the stem cells "switch on" the "healing process" in the target region of the body by natural cell division etc. - the first qustion is - How is this process turned off? 2. If the process CANNOT be turned off, per se, and cell division and growth continue - what are the risks of cancer development? 3. As Stem Cells are "basic" cells, how do the STC companies ensure the stem cells only target the specific organ/body system that they are being injected for? Anyone contemplating this highly "dangerous" (see above) treatment should be asking ALL these question of themselves AND whichever STC company they apply to. Would you take a drug which had not been rigerously tested by laid down statutes to ensure safety AND efficacy of that drug, thus not knowing the long term effects on not only yourself but potentially on any children you may have in the future - both parents should think about this - as drugs/treatments can have adverse effects on both sperm and ova. If the answer to this is "NO", then why would you then take the risks with a clinical treament which has not undergone the same testing? MS is a terrible disease for some, and yes, we are all looking for the magic "cure", and some people ARE desperate for anything which will enhance their quality of life, but, you have to ask yourselves, Is STC worth the risks at this point in time? John Squiffys House of Fun - laughter for MS Diplomacy is the art of saying 'Nice doggie!'... till you can find a rock.. Philoz Registered Member Posts: 148 (14/10/05 3:53) Reply \| Edit \| Del Re: STEM CELL TREATMENT -------------------------------------------------------------------------------- I'd just like to say that I think the discussions and information regarding SCT on this board have become something of a hotch-potch. In my opinion, to be meaningful and helpful to all, there needs to be more order. I understood that all discussion was to be centralised in the section above, which is OK but then threads like this bob up. Then, there was the thread of the independence of ACT from Biomark which has been set free and earlier useful threads re SCT which are also hard to find again. Further, but of secondary consideration, I note that some of the 'debate' has become a wee bit emotional and sometimes lacks substance and answers. SCT is, especially for many long term MSers, one of the most promising treatment options available for the immediate and medium term. And as we know, on the subject of SCT, our governments have become somewhat politically distracted and rendered impotent by able-bodied misguided do-gooders. Accordingly, as MSers we are required to proactively assess the merits and alternatives of SCT ourselves. Sadly, we cannot sit back and wait for someone to serve up a ready-to-go, no risks SCT with all the extras. So that is where sites like this one are particularly helpful in assisting us to make individual informed decisions on this important subject, ourselves. So, whilst I'm very grateful for the general professionalism and energy of this website, I would find it helpful if all discussion regarding the subject of SCT was ordered and archived a little better. Regards (and no offence intended) Phil. squiffy2 Administrator Posts: 9148 (14/10/05 9:31) Reply \| Edit \| Del Re: STEM CELL TREATMENT -------------------------------------------------------------------------------- Hi Phil, No offense taken I have tried to keep all the STC stuff and for that matter the LDN stuff in the pasted threads, but, as you have said some times new threads do start up at random and I can forget to copy them over. I will endeavour to sort this out as soon as I have 5iminutes (or hours probably ) spare. cheers squiffs Squiffys House of Fun - laughter for MS Diplomacy is the art of saying 'Nice doggie!'... till you can find a rock.. Squiffys House of Fun - laughter for MS Diplomacy is the art of saying 'Nice doggie!'... till you can find a rock.. squiffy2 Administrator Posts: 9151 (14/10/05 8:41) \| Del Biomark and ACT Questions Answered -------------------------------------------------------------------------------- HelenMSRC Administrator Posts: 2038 (30/9/05 12:35) Reply \| Edit \| Del All ezSupporter Biomark and ACT - Questions Answered -------------------------------------------------------------------------------- Hi everyone, Our current favourite 'Hot Potato' - Stem Cells. Some time ago this thread was running Stem Cell Treatment Thread Below is the long, but comprehensive, reply to various points raised in that thread. You will see, this is from Sebastian Carlyle, CEO of ACT. Being purely the messenger, please remember to keep those guns unloaded and pointing down towards the ground! I would also just make the point that ACT HAVE responded. I asked for their comments and they have comprehesively given them - there are many companies out there that wouldn't. Helen September 30, 2005 In response to a number of statements that have been made in recent months on the MSRC message board, I would like to address each of these issues individually. 1) Stem Celt states: - ..ACT is run by the same people who ran Biomark.. This statement is completely false. ACT is a Swiss based company with totally different directors and shareholders to Biomark. We have been completely open about the fact that we did acquire certain of Biomarks protocols and data. Our acquisition of these protocols was made after extensive international research into umbilical cord blood therapy. We conducted our own studies into the safety and efficacy of the protocols and we reviewed the data before concluding that the umbilical cord stem cells produced by Biomark were of an exceptionally high standard. We have adapted and enhanced on these protocols to produce and even better product with a significantly improved support and service structure. Our results speak for themselves. We have no further affiliation with Biomark. It is important to also be aware of the fact that we received full disclosure from Biomark regarding their investigation by the FDA. Biomark was a US company providing access to umbilical cord stem cell therapy in the USA and abroad. They had obtained positive legal opinion regarding their ability to conduct their business in the US. After the investigation Biomark chose to continue their work in Europe to avoid further harassment. It is not true, as has been stated by some individual that Biomark was shut down by the FDA. They chose to continue their work in a country where the government is supportive of this type of research and therapy. It is important to note as well, that two years have now passed and the FDA have never issued any warnings or laid any charges against Biomark. I would also like to draw your attention to the fact that FDA investigations are commonplace in the US, and do not necessarily imply wrongdoing, point in fact being the recent FDA investigation into the New York Cord Blood Bank. NYCB is arguably one of the largest, most well established providers of cord blood for therapeutic application in the US as well as a prominent scientific research institution, yet this organization is now the subject of an FDA investigation. As FDA investigations are routine and commonplace in the US, an investigation does not imply that an organization has been discredited as stated on the MSRC chat board. In fact there are very few pharmaceutical and biotech companies that have not been the subject of an FDA investigation. One should also not be nave about the fact that often action is taken due to political influences rather than de facto wrong doing. The US Governments position on stem cell therapy is not a secret and one should keep this in mind before, without any facts, outright condemning a company that has provided a much needed service and in the process helped many people. What makes me comfortable as the CEO of ACT, is that ACT has a protocol that has been tested over 3 years, with no negative side effects, and has provided benefits in over 60% of cases. This protocol has now been improved and enhanced by our doctors and scientists and is now providing an even higher ratio of benefits. This therapy is being offered at below the average market price of $25,000 -$180,000 for similar therapies. In conclusion, I am not sure why stem celt would make such an untrue and unsubstantiated claim. What I find most fascinating is that nobody has asked the simple and obvious question On what proof do you support your statement? What I do know is that certain people are used to generate unsubstantiated counter press on stem cells. What I ask is to allow common sense to prevail. Do not accept at face value everything that that you hear. Not everything that we read about is true. One should also be aware of the fact that unidentified individuals have been used to generate unsubstantiated counter press for stem cells. It is important to be aware of this and to use common sense and personal research to separate and identify fact from fiction. 2) Stem Celt states: plenty of people had good results to start with, .for a few months.., and then regressed. Having reviewed the databases I do accept the fact that certain individuals who were arranged treatment through Biomark did have positive benefits which later regressed. What I can assure you is that this is the vast minority. There are many individuals who have experienced significant clinical benefits which have maintained over 2 years and are still maintaining. I wish that we or anyone involved in the field of stem cell medicine or allopathic medicine could offer a guarantee of success for the chronic conditions experienced by many who seek stem cell therapy. I am sure that you will accept that this is not possible. We are conducting extensive research into identifying the common denominators present in individuals who do not receive benefits or whose benefits regressed. This was one of the main reasons why we acquired the Biomark database, as they had accumulated more case studies in the field of umbilical cord stem cell therapy than any other organization in the world. This data we now own and we are dedicated to finding ways of improving the therapy. While I cannot offer guarantees, I ask you again to use common sense and read about the many miraculous benefits which have been experienced by many individuals who have received the therapy. An in-house study revealed that to date only 5 out of 100 individuals with MS reported experiencing benefits from the therapy which later regressed. The interesting common denominators were that 1) each of these individuals were referred and networked through the same source, and 2) each opted to continue taking Novantrone and/or immune suppressing or modulating drugs, both scientifically proven to inhibit stem cell activity. 3) Stem Celt states: .it might be worth waiting for Aimspro.. Aimspro is an animal serum which has not been formally tested to my knowledge. There are known side effects and yet Stem Celt is proposing that people should try this instead of stem cell therapy. One should not forget the fact that billions of dollars are being spent worldwide to fund research and development into stem cell therapy. Most developed countries have government supported programs to aid in this research and development. Cord Blood Stem Cells (CBSC) have been used since 1988 for the treatment of blood diseases. CBSC Therapy is not new and untested, 25 years of data exists. It has however only recently been discovered that CBSCs may have far greater healing potential than first envisaged. Multiple Sclerosis is one of the conditions identified as having the most promise for positive results. It is highly questionable that someone should be promoting an untested animal serum above a therapy which has already produced significant positive benefits and with no side effects. 4) Philoz writes: .. link between the ACT and the discredited BioMark I hope that I have covered the issue regarding the relationship and current lack thereof between ACT and Biomark. This is obviously an issue which can be verified in fact and not unfounded and inflammatory statements. The issue of Biomark being a discredited organization has also been dealt with in 1) above. 5) Philoz writes: .ACT website shows significant improvements in only a minority of cases. ACT protocols have increased positive responses to the treatment for MS from an average of 50% in 2002 to > 80%, taken from the latest statistics not yet published on the website. (i.e. over 80% of individuals currently treated through ACT report receiving positive benefits which do not regress.) As mentioned earlier we cannot however predict or guarantee the results and how they may differ from each individual. In conclusion, I cannot be sure why Stem Celt would make such untrue, provocative and unsubstantiated claims. The purpose is clearly to create disruption and doubt, amongst the members of the MSRC. What I do know is that in the past specific individuals have been used to generate false and unsubstantiated counter press on stem cells. What I do request is to allow common sense and fact based evidence to prevail. I am able to with confidence state that the therapy that we provide through ACT is of the highest quality and standards. The new protocol and cells which we have developed are providing results beyond our expectations. Our research team has developed several new lines of specialized cells which will be made available in the new year. Our group is committed to advancing the field of Umbilical Cord Stem Cell Medicine through international collaborations and expansion. We provide Umbilical Cord Stem Cell Therapy to more individuals each month and in more countries than any other organization. The factors motivating and influencing an individuals decision to have stem cell therapy differ dramatically from person to person. It is my recommendation that one should be well informed and absolutely comfortable with all factors influencing their choices before making final decisions which impact their future health. Sincerely Sebastian Carlyle CEO Advanced Cell Therapeutics Ltd Nikleg Registered Member Posts: 94 (30/9/05 20:57) Reply \| Edit \| Del Re: Biomark and ACT - Questions Answered -------------------------------------------------------------------------------- I think that says it all. Why me? Hey why not! Philoz Registered Member Posts: 143 (1/10/05 7:43) Reply \| Edit \| Del Re: Biomark and ACT - Questions Answered -------------------------------------------------------------------------------- As some earlier comments of mine have been referred to in the ACT response above, I would like to express the following views: 1) I appreciate the efforts of Helen in seeking clarifiation of issues surrounding ACT and I personally commend ACT for responding. 2) Clearly, my point that there is a relevant link between the former Biomark and ACT, has been validated. However, I accept the independence of ACT. 3) My reference to Biomark being 'discredited' was especially with respect to the fact that a number of US MS patients report that they pre-paid for treatments which they did not receive. Nor apparently did they receive an adequate refund, a matter for which the FDA cannot take sole responsibility. 4) I made reference to the fact that the ACT website testimonials show that only a minority of its MS patients have received 'significant' improvements; a view I stand by. Others can make their own assessments. 5) I am in regular contact with 4 US MS patients and I know of several others who received the Biomark treatment and all regressed after an initial phase of improvement. It is to be hoped that the ACT protocols have improved significantly over those of Biomark. 6) Along with others I am anxious to obtain truth and confidence in the SCT industry. That said, I welcome the existence of organizations such as ACT which are prepared to push the frontiers of medical science. With the right conditions I would be keen to undertake an SCT treatment, myself. Regards, Phil. Philoz Registered Member Posts: 147 (11/10/05 8:31) Reply \| Edit \| Del Re: Biomark and ACT - Questions Answered -------------------------------------------------------------------------------- Squiffy, Shouldn't this thread be tacked on to the SCT reference thread, above? Lest it be lost very soon. Regards & thanks, Phil. Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .
squiffy2	S. Korea controversy leads to calls for more oversight	#20	[-]
Posts: 26122 (18/12/05 18:32) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	As a South Korean scientist defends against mounting accusations that he falsified evidence in a breakthrough stem cell study, researchers in California said the controversy has caused significant damage to a promising and fledgling field. Doubts about Hwang Woo-suk's claims that he cloned human cells to create embryonic stem cells have made scientists wonder whether the prospect might remain elusive for years. Researchers and doctors hope to use this process to genetically tailor stem cells for patients suffering from such diseases as Parkinson's, diabetes and multiple sclerosis. "It's a black eye on the whole world of science," Richard Murphy, president of the Salk Institute in La Jolla, said. "Exciting areas of research are always competitive . . . but healthy competition never justifies sloppy research, cutting corners or dishonest behavior." For full article please go to MSRC: MS Research News : Stem Cell Research & Treatment Squiffys House of Fun - laughter for MS When I die, I want to die like my grandfather--who died peacefully in his sleep. Not screaming like all the passengers in his car." .

<< Previous Topic Next Topic >>

Yuku free message boards

Discussion of Stem Cell Research and Treatment

Discussion of Stem Cell Research and Treatment

Quick Reply