Hi everyone, Has anyone ever come across stem cell therapy which doesn’t involve chemo. It appears trails in uk have started but nothing more been said. Apparently 13 people are being trailed with RRMS It would be great to be able to discuss. Everyone within research seems to be saying we are 10 years from a cure…a word I think is very dangerous…and they all talk about stem cell being the key to repairing the myelin. Why is stem cell therapy so frowned upon, why are they doing it in Germany, Switzerland with some success and it is never publicised here in the uk. Is it a case of funding? Why are all neuro anti if it has worked for some people. I am under the impression from researchers that regulations are slowing down the process to get trails through, so why don’t we campaign to get them speeded up. Am I alone in my thinking. Yes there are a lot of charlatans peddling quick fixes which are very wrong, but there must be something to it if all researchers are putting so much energy into stem cell research. Be interested to hear other peoples opinions. Surely we should be made aware of how to get on the trails, after all we are adults who can make an educated choice in our own health care.
Well, Anon, what always seems to happen is that someone does a piece of research that is a bit earlier than even Stage I trials, the less responsible part of the press hail this as a medical breakthrough, and then the more, shall we say “profit oriented” section of the medical community leap into action offering this wonderful new cure.
In the case of stem cell therapy, it is not very long since a clinic in the Netherlands was caught giving stem cell treatment with stem cells harvested from cows. Now I have no doubt that the people who had those treatments thought that they were making an educated choice.
Research is not a matter of “chuck some money at the problem, snap your fingers, sprinkle a little magic pixie dust, and there is the new wonder cure up and running”. It can take several months just to get a proposal through the relevant Ethics Committee, then you can start lining up the funds, facilities and equipment, people, and the experimental participants. Of course, if you want to short-cut all this you can go somewhere that has never heard of an Ethics Committee, only the “bottom line”.
The MSSociety is already funding stem cell research. You can search the website, find out where, do a bit of e-mailing and see if they are ready for human participants yet.
Now I personally think that stem cell therapy has the potential to become a cure for MS - but at age 76, I do not think this will happen in my lifetime. But then, I do know how long good research takes.
Geoff
I think that DoctorGeoff has said it all. Alison
http://www.mssociety.org.uk/ms-resources/stem-cell-therapies Here is a link to the related info on this site, if anyone is interested in the topic. A
Well explained by DrGeoff as always.
I would just like to say that i also believe stem cells are the way forward to a cure for ms.
I am 42 and i hope to see it in my lifetime. I really hope it’s going to be sooner rather than later but i would rather wait to make sure it has been trialed/tested enough before it’s available.
Not everyone will think like me of course as my ms is mild at the moment. If my ms was really active i would probably have a completely different view.
There was a blog on here a while ago about a brave lady who had stem cell treatment. She lost some fingers in the process. I know it was ‘Stella’s blog’ but i don’t know the full details.
Perhaps someone else on here can direct you to it?
Teresa.x
I’m with Geoff. I don’t think stem cell therapy is controversial in itself - when it’s done by the right people, as part of properly controlled research. There is a thriving - and legitimate - stem cell research programme here in Bristol, and they don’t take anybody’s money for it. Early results have been promising, but I don’t think this technology is anywhere near advanced enough for anyone to be offering it commercially as a “cure”. There are problems still to be overcome, such as you cannot yet ensure the stem cells ONLY work to repair damaged myelin - which means there’s a risk of tumours. At the moment, I don’t consider it sufficiently advanced that I would even want to join a trial for free - let alone pay thousands of pounds to be experimented upon - which is, in effect, what you’d be doing if you go to a commercial clinic. It’s unethical of them to offer it as a safe and effective treatment, when that is very far from being established. I do think it’s an exciting research area - possibly THE most exciting. But I hope Geoff won’t mind me saying I’m quite a bit younger than him, but even I have doubts whether it will be translated into a safe and effective treatment, suitable for mass rollout, in time for me. I don’t want to go to some quack clinic that claims to be able to offer it sooner - simply by bypassing proper scientific research. Cerainly not all neuros are anti. Mine isn’t; his team are engaged in the research! Why would they be researching what they didn’t believe in, or even frowned upon? But they certainly would frown on unregulated foreign clinics, who claim to be able to offer what even the most advanced researchers in the field currently cannot. I don’t think any reputable neuro actually wants patients to be fleeced of their money, to undergo unproven and potentially dangerous treatment. You can find a list of MS trials on the NHS website, which is public domain, so available to anyone who can use Google. It took me about two minutes to find it, so I don’t think there’s much of an argument it’s being unreasonably hidden or withheld. The few trials I clicked on at random did take me through to further info about how to apply. Obviously, my quick test isn’t conclusive proof they all have that info, but if you see one you like the look of, but it doesn’t, I’m sure you could make a note and discuss it with your neuro. The websites’s here: Clinical trials - NHS It didn’t take me very long at all to find a stem cell one, but it was only for rapidly evolving active MS - which won’t be everyone. If I’d looked further, I expect there are others. Tina
Of course I don’t mind you pointing out that I am nearly over the hill, Tina, but I think we have both missed something.
Why was the OP Anonymous. Stem cell research is legal. The wording of the original post did not make any actionable statements - so it could not be for fear of legal action. So two possibilities come to mind:
1 - The OP is someone well known to us on this forum for advocating some of the more “unusual” treatments.
2 - It’s a troll.
Perhaps the thread did not develop in the way it was hoped. perhaps this particular OP will return as someone else.
Watch this thread - it has got to be better than watching a fish rot.
Geoff
Really interesting to see comments thank you. I am a massive supporter of MS Society and have huge respect for all those involved in research. I hope that by raising this topic we can have a balanced debate. I have looked closely at the Australian ms society who have posted lots on utube on stem cell developments. They are already in phase 2 trails of stem cell therapy in patients. I am by no means wanting things rushed and cutting corners. But if a little lobbying would help I am all for it to get though the into the uk. Funding is vital and millions if pounds would be needed. It is reality I am afraid not not just throwing money at it. One researcher told me it will take 26 million pounds and ten years to get trails through ethic eu red tape. Interesting. It does come down to hard cold cash and dedicated people. I am delighted to see things in Bristol, I was not aware of it. Seen Stella blog, that involved chemo the immune system then own patients stems cells reintroduced. Using chemo is a high risk treatment. That’s why I specifically asked about treatments without chemo. There have been some massive advances in stem cell where it can be taken from fat. This ensures that it is your own stem cells and thus reducing risk of tumours and rejection. I don’t want to put the wacky clinics offering fantasy cures, with proper research and development as in Cambridge, Edinburgh and it seems Bristol. Having spend many hours with very prominent biochemists and researchers it is interesting to gage the general opinion within the ms community. Not all neuros are the same, they have there own opinion, that’s why people get second opinions. Thank you for your input I genuinely find it really exciting and for those in early stages of ms and have age on their side I really do hope whether it be stem cell or drug therapy that is the key to repairing the myelin and protect it from damage is around the corner. Regards.
Geoff - i missed that one as well!
T.x
Geoff I thought this forum was meant to be able to be confidential, without risk of judgement and personal attacks. If someone’s wants to be anon then you should respect their wishes. Comments about trolls and why they are remaining anon and questioning their motives is a direct personal attack and against the forums rules. It smacks of bullying by trying to get others to “watch this thread”. The response is exactly why I wanted to be anon. 1. No alternative motive, not advocating alternative therapies. 2. Not a troll Please have some respect for others
I see no need for “Anon” to discuss this kind of topic. It’s an orthodox research area, and not even controversial - although outfits offering it for profit, as a “safe and effective” therapy almost certainly would be, as medical science is still some way away from that.
You (original Anon, if there is more than one) seem to be under the impression there’s some sort of conspiracy - either on this forum, or in general in the U.K. - to prevent it being discussed. Yet if you had researched the topic at all yourself, you would already know about the pioneering work going on in Bristol, led by Professor Scolding. And I don’t think his team is unique in the U.K. I just happen to take a particular interest because they’re local. Professor Scolding isn’t my neuro, and we’ve never been formally introduced, but I do know him by sight, and have certainly had dealings with his colleagues, so I’m interested in what they research when they’re not actually seeing patients.
If my MS gets desperate enough, or their trials get advanced enough, or both, I may well find myself asking whether I’m a suitable candidate. For the moment, though, I’m doing quite well as I am, so I’m not yet ready to put myself forward for something that might have cancer as a possible side-effect. My reasoning at the moment is, if I’m getting on OK, don’t mess it up by participating in a non-essential experiment. But obviously, over time, the balance could change, to the point I might feel there would be nothing to lose. That’s why I like to keep a weather eye on what they do, in case I feel the time has come to step outside my comfort zone, and say: “Right; Where do I sign?” I still won’t be doing it for anyone who asks for money, though.
Tina
Simple…if you don’t want to discuss a topic …don’t, but respect fact others want to.
I fully support everything Tina and Dr Geoff have said and being Australian I have obviously been following the various stories on stem cell research quite closely down here. There have been a few people treated with the process involving extracting their own stem cells and giving them chemo and then replacing their stem cells. ( the process Stella underwent in her Blog) and two of those people have had extraordinary success with it. However it was considered suitable for only a very small minority of people and is not without a high level of risk and has now been discontinued as a treatment because of the risk factors. But as you say, you are not asking about the HSCT treatment.
From what I can gather from your post your are asking about stem cell treatment that involves extracting stem cells from fat cells and manipulating the properties of the cells to make them able to cross the blood brain barrier and target specifically the inflammation in the brain. This is very early work indeed and is still mainly labarotory based using petri dishes rather than humans however recruting is under way suitable people with MS.
As for your grumbling about Britain not being involved what you are missing is that this research is terribly expensive and the best way to do it wihout uneccessary reinventing of the wheel and making the best use of resources is to do it in a global collaborative approach which is exactly what is happening.
There are currently at least 5 international trials in this area either currently recruiting or about to including one in London which started recruiting a year ago.
I have also included a couple of other articles which may be of interest to you
http://www.msra.org.au/treatment-multiple-sclerosis-using-human-stem-cells
https://www.mssociety.org.au/documents/information-sheets/Stem-cell-therapies-and-MS.pdf
http://www.adelaide.edu.au/news/news61261.html
Without wanting to create a row I also do wonder why you are going Anon. I think it is a bit cheeky of you to call Dr Geoff out on breaking the rules when you are also in breach of the T&Cs simply by going Anon with no valid reason. The Anon facilty is there to protect people’s identity in a situation where they may need to hide their identity due to an embarrassing question or in a situation where they want to ask a question without all their Forum friends knowing about their personal circumstances. For exampler, Anon is used for questions about incontinence, depression and other potentially awkward questions. Asking a perfctly valid and legitimate question about new research hardly comes under those criteria so beware of pots calling kettles black.
B
I didn’t say: “There is no need to discuss this topic”, I said there is no need for Anon for it: quite a different thing.
Again, this paranoia (if the same Anon!) that you think others are either unwilling to discuss it, or somehow trying to prevent you from discussing it. I haven’t seen evidence of either, in the replies that you have received. But I’m not going to debate any more with someone who uses “Anon” for no good reason. It’s against the terms and conditions, as Brog has already pointed out. If you have a sensitive question about bodily functions, or a difficult work matter you’re worried might identify you to your employers, then fair enough. But just to talk about evolving research areas? What’s so sensitive or personal about that?
You seem to think this is a great deal more controversial or “hush-hush” than it actually is. If somebody won’t put their name to a perfectly legitimate discussion topic, I have to wonder why. Is it because that person has a commercial agenda, maybe - such as wanting to tout certain therapies, or testing the receptiveness of the market? If not, I’m at a loss to know what’s sensitive or confidential about it - it’s all public domain stuff. Several people have now linked to resources about it!
Tina
Without wishing to hijack this thread, maybe some of you will be good enough to consider my situation and let me know what you think.
Prior to dx of PPMS in March 2011 I was an active, sporty businessman with a great wife and 4 wonderful children. Today, less than 3 years later, I am a full time wheelie, unable to even stand alone, unable to walk, unable to drive, unable to dress myself, some days unable to feed myself, not able to work, problems with bladder and bowels and other issues that MS has given me.
My neuro in London is a great man and at the third attempt finally convinced me to start a 2 year course of IV chemo on 14/01/14. He says there is nothing else the NHS can offer me and there is only a 20% chance of it slowing progression. Side effects include passing blood in urine and the possibility of triggering cancer. My immune system will be depleted leaving me wide open to infection and we all know where that can lead.
Then I find a page on Facebook called Hematopioetic Stem Cell Transplant. People on here have either had or are waiting to have HSCT. Yes they have paid an awful lot of money but some are saying it not only stops progression it cures you of this horrendous disease. Reported success rate is 80% and there has been1 death.
Compare the 2 situations. I feel I have nothing else to lose as everything I valued and took for granted has gone. Even my consultant says the way forward is stem cell therapy. Because the NHS hasnt approved it yet doesn’t mean it doesn’t work. It means the NHS is maybe 10 years behind other countries in research terms and I need to act now.
Regarding the trials at Imperial in London I applied when I was diagnosed and 49 years old. 2 years later and aged 51 I received an email saying I was too old as the cut off age is 50.
I don,t think I’ll be having the chemo in London as 2 years without an immune system is way too long and chemo without HSCT is doing only half the job.
Thanks for taking the time to read this.
Steve x
There is no doubt that red tape beurocracy etc is slowing down things and making them more expensive. We have become a suing nation which is so obvious with all this ‘no claim no fee’ that is being advertised all the time. For example…
My son was diagnosed with eye cancer and had one eye removed. The other eye needed checked for tumours every 3 month under aneasthetic. We had to travel to London from Belfast for this. On one occasion he was having his socket repaired and I asked the doctor to check his good eye to save him going back under aneasthetic the following week. He said he would. The nurse came with the consent and I signed it.
After surgery I asked about the good eye. The doctor said he couldnt check it as the consent form had only given him permission to perform the surgery on the empty eye socket. If anything had gone wrong with him checking the good eye then I could have sued him. So we had to travel to London again the following week and my son had to go under again at the NHS expense. In other countries they would have just done it.
If my condition was bad and progression was severe I would try anything if i could not afford to wait 10 years. Years and years ago before chemotheraphy for cancer was available here…trials had not finished here people went abroad for treatment. My Grandmother was one of them and lived another 20 years after treatment.
Moyna xxx
[quote=“Anonymous”] Geoff
I thought this forum was meant to be able to be confidential, without risk of judgement and personal attacks. If someone’s wants to be anon then you should respect their wishes. Comments about trolls and why they are remaining anon and questioning their motives is a direct personal attack and against the forums rules. It smacks of bullying by trying to get others to “watch this thread”. The response is exactly why I wanted to be anon.
No alternative motive, not advocating alternative therapies.
Not a troll
Please have some respect for others [/quote]
Well, “Anon”, perhaps you should look at it like this:
There are at least six statements in your original post that could be construed as personal attacks - and would certainly have drawn that sort of response had you posted under a regular username. If you think my comment about a troll is a personal attack then you should have reported it to the moderators. However, I do note that by using the words “smacks of bullying”, you seem to be trying to avoid making a personal attack on me whilst doing exactly that. Exactly the behaviour of a troll at bay.
You alone know why you posted as Anon when the subject very clearly did not call for it. However, you should not be surprised at the number of people who have commented on this.
Geoff
(Who has never posted as “Anonymous”. I will either keep silent, or share my opinions, expertise, experience, etc; and if I am wrong, I apologise publicly.)
Am I alone in thinking this has once again got out of hand. I personally don’t think anon user deserves this and find it quite upsetting ! Come on lets play nicely and be friends
I posted earlier on this thread and post seems to have disappeared. Anyone know why?
Steve my heart goes out to you. I honestly can’t find the right words at the moment…I will think of you in my prayers if that is ok with you.
Love and Light to you on your difficult journey Steve
Noreen xxx