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abigaild
4 weeks ago

Chris,

Thank you for sharing this perspective. It is so important that people just like you are willing to speak out and share their input.


vixen
4 weeks ago

Yes, I agree. Also, we all need to be mindful about what happens when the media becomes involved and things can suddenly take on a whole new life form. Thanks for your thoughts @christopher_paul_gill


sciencegeek
4 weeks ago

http://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis

This report isn’t exactly a riniging endorsement. It reports that she mostly feels less well than before HSCT, as do amy people that she is in touch with.

I am sure that it works for some people, and I suspect that these are the people who are eligible for the NHS trials.

thank you. To my understanding the chemo is being trialed on younger people at the relapsing remitting stage in the UK. Abroad they will take anyone. But my logic is if you are in relapsing remitting stage is chemo really the way to go for remission? I would say no, its unproven. Stem cell therapy also is putting you at risk as they don’t know how to program stem cells yet. Its like firing cannons at an unknown dark continent.


paulmorrison
4 weeks ago

I guess everyone’s view is different. I have applied for treatment in Moscow, if somebody had told me a year ago that I would be grateful to get chemotherapy in Russia I would of laughed in there face. But in my view I might have the chance to roll the dice and dump ms. It will all come down to what risks your prepared to take. I would play Russian roulette to slip mine. At the end of the day, that is probably just a personality trait.
Stay well.
Paul.


marcyg921
4 weeks ago

I don’t know what it is but the words Stem Cell treatment just sound absolutely terrifying to me and after hearing what people go through with this treatment and after seeing how much it costs, I’d definitely go with one that has been approved by the NHS and this definitely should be a final resort. I hope people who get this treatment rceover quickly from it and feel the benefits of it but I took Lemtrada and its working wonders for me so far and this treatment just sounds like it would only give me the same result Lemtrada would.

yeah its pretty random, some treatments work for some, its a long way from being an exact science. Manage hope and expectations if you can.


sciencegeek
3 weeks ago

My own personal view is that the individual’s choice is paramount. Different people approach risk differently, and different people value the change of a cure highly whereas others would be happy with a treatment that will be effective at just slowing progress.

The NHS does make the stem cell treatment available to the population of pwMS that it is most likely to be effective for, and for whom the huge risk is thought to be “worth it”. But there are other people who think the risk is worth it for them, and they can go abroad if they want to do that.

It’s definitly not a miracle cure, or even an appropriate treatment for everyone. But it is for some, and they should be allowed to do have it. When the media get involved and everything gets hyped up, it can be hard to make a rational and well-informed choice.

Each to their own, and hopefully we can all find a neurologist to support our plans and wishes.

well said. Each person has to find their own path


rachaellouise
3 weeks ago

@christopher_paul_gill

Thanks for sharing. Nice to have different perspectives and viewpoints.
Its weighing up the pros and cons for your individual situation I think
Your correct the dm d s are just as bad as chemo side effects wise, difference is you only have the chemo for once. Dmd chemicals everyday being pumped into your body. Check out Matt Embry on Living proof documentary and they don’t work, don’t reverse damage.

I saw that trials say the Sheffield trials worked now they have recently come to the end. Thing is papers do sensationalise things as you know. So probably better for people to look at the true facts on it. Peer reviewed papers to make up their minds if anyone is thinking of having it or find out facts.

Yes, a good idea to wait until peer reviews come out, but as with many drug based treatment, be skeptical. Since medical treatment is big business.


rachaellouise
3 weeks ago

@christopher_paul_gill

Yes be careful but at the same time it’s not unreasonable to think some must be legit , it’s finding the ones that are, not just accepting their all rubbish.
We need to focus on the positives and their is help out their for people with MS ..

yes I use Chinese medicine which is very hard to access. Its just what works for you and avoid the many dodgy folk on your journey if you can


strictlysoca
3 weeks ago

Thanks for your views interesting. It’s been another frustrating few weeks as people keep asking me have you seen the new cure for MS. No I haven’t there isn’t one yet.

Matt Embry mention by @rachaellouise is still promoting CCSVI which has been comprehensively disproved. His diet and exercise ideas are positive but his brain will be being shredded (may be more slightly slowly) just like the rest of MSers without treatment. Treatments such as they are not a full stop and they are very lucrative for the pharmaceutical industry but that doesn’t mean they don’t work (apart from CRAB drugs which are not worth taking now as there are many that are better)

Wishing everyone well


rachaellouise
3 weeks ago

@strictlysoca

All I know is we have to try ! Wether their is a said cure or not !
In most cases trying won’t do us any harm will it !

The drugs now are very lucrative to the pharmaceutical companies ! Much more than stem cells which are one off treatments not ongoing costs where they make millions .
Also trying diet and lifestyle is free ! Our own bodies are much brighter than anyone else . It’s proven what causes disease it’s inflammation .,, so can we reduce it , get it in balance? Don’t know but I feel I have to try ….


rachaellouise
3 weeks ago

Also we don’t know what Matt embrys Brain is like do we , it’s only summarising that it’s like you say ? We would have to give him a mri !


mermaidia11
3 weeks ago

@christopher_paul_gill
Thanks you for your thoughts on this, based on logic and evidence
You seem like a clever chap and have given a lot of us food for thought and shared a different perspective, which mirrors some people here, (me included)as did a lot of other people’s comments.

Knowledge is power and any decisions made about our health should be based on evidence and considering the bigger picture.

Playing the long game, not the fear game.

And not being all trusting, unless that source is independent, intelligent and with no ulterior motive. Hard to find in this day n age.

I have the utmost respect for anyone who can master Chinese medicine.

It took me 2 months to read the Art of War and 6 months to learn the I-Ching – I thus have the utmost respect for Chinese wisdom too!

So in conclusion, I wonder if you could tell us in (perhaps in a new post)synopsis, what it is you take, how/why on the Chinese medicine train, whether it has helped physically/mentally both?

And good luck and godspeed to everyone here

Thanks x

Hello
thank you.
Gosh yes the Chinese medicine thing is complicated, I do speak Mandarin, and my Chinese doctor is my mother in law, so not really an easy path to follow.
I did do that thing were you write a book/journal, I think a lot of people with MS do because your life is like you are suddenly in a science fiction novel.
So, in synopsis. my treatment is pro bono, and it varies a lot, depending on what organs/sym[toms she feels need treatment. You drink this pretty nasty soup made up of all sorts of ingredients, over a set period, say a week or a month. You also get a lecture on foods, drinks, etc which should be avoided. Its all about balancing your system, and yes it does work, just tastes awful. Its not a cure, more like a tonic.
I feel more natural, less symptomatic. Bit like a detox or beach holiday feeling.
Anyhow, my doctor is semi retired so I am lucky I get to do a treatment once or twice a year.
There are a lot of fake/dodgy Chinese medicine practitioners, if you do try this route probably best check in one of the reputable government owned Chinese medicine hospitals in China. I was told in Shanghai they are also using long needle acupuncture therapy on some people to reduce lesions/regain mobility but I haven’t tried it.
I did a short video of my set up here, cheers

I would just add, in my opinion, the ‘cure’ for MS probably does lie in stem cells, but not injecting the patients own stem cells but ‘fresh’ stem cells. The issue is scientists don’t yet know how to programme stem cells, they are like blank biological building blocks, with soft switches. Its going to take a long time, likely decades, before we really understand them. When they do work, they will be crazy expensive but likely will vastly increase life expectancy for those who can afford them. Right now you are paying scientists to experiment on you.
Currently stem cells used often lead to unexpected genetic mutations (ie. cancers), stem cells are God’s building blocks. The stem cells in the future can be programmed to remit the various damage caused by MS, and with better understanding of the immune system they will repair it with stem cells, not by ripping it out with chemo. But when they do figure it out it is going to be very expensive.


seanachai
3 weeks ago

Hi Christopher

I am not going to bash and say your opinion is wrong, your opinion can’t be.. and glad to hear it to be honest….

However some of the conclusions you have drawn on specific points are factually wrong….. and I just want to balance the discussion….

As a preamble, I am on the Coimbra Protocol and at this juncture in my life I am not looking at HSCT… but that said I am a fan of Stem Cell therapies in general and feel they will unlock MS in the future, maybe not in its current form but in some form…

In regards to the current HSCT for RRMS patients – I don’t agree with the comment it works for a select few – the clinical trials don’t lie – it has major impact for significant percentages of people 70-80%….. and halts disease for what looks like 5 years…. that is materially significant, these are facts supported by clinical trials – conclusion we cannot question the efficacy of the treatment for a very significant percentage of people wit RRMS; SPMS and PPMS is a different discussion but even there it has major consequences….. you only have to see clinical evidence from people with progressive who have sought treatment in places like Moscow…..

Is it not for everyone and without major risks – it has big big big risks – death – albeit small percentages now less than 1%, but nonetheless risks….. is the road to recovery if you survive hard? you bet your arse its hard….. its chemo after all…… conclusion – its not for everyone, it has risks….. its the usual MS vs treatment risk discussion…. MS at its worst, some people feel not worth living…. and so will risk anything… that is a personal (opinion) choice…

Its frustrates me no end that a lot of treatments focus on RRMS (I am RRMS, but love others with PPMS), I understand to some degree why the focus on RRMS and without going into details in part believe it does relate somewhat to your comment re “fame”, but it makes me very sad and angry the way the politics of therapy unfolds… anyhow…

I would encourage you to watch the developments in Stem Cell treatment……in a separate post I sent….

Maybe you can’t be swayed and thats cools too….. but I don’t think we should put people off…


strictlysoca
3 weeks ago

We do have to try diet and exercise as they are proven to improve quality of life and delay disability @rachaellouise. It is a presumption that an individuals’ brains will continue to atrophy without DMT treatment however what is proven is that brain atrophy continues even without relapses (inflammation) in general in MS. It’s a funny old disease is MS which lends itself to claims of “cures” especially as it spontaneously gets better whatever anyone does if it’s is RRMS stage (I’m a one disease different stages theory person).

Wishing all well with their strategies. I follow the Wahls protocol (first stage) which has helped along with an effective DMT (realistic expectations 🤓)


rachaellouise
3 weeks ago

@strictlysoca – where is the evidence of this ?
If we can balance inflammation then we will just be like anyone else without disease!

There are some great opinions on here! Passionate too.

I am at present trying diet and lifestyle changes ( I am also Whals compliant ) would love to try and get to level 3 and stay on it for along time to see effectiveness .

I also am a fan of stem cells ( not the gruelling procedure and chemo etc) but that is he closeset thing to be proven in trials to help ms.
Also yes their are risks like with anything but you have more chance of getting knocked over when you walk out your house or having a car crash etc things we do every day than the chance of dying through stem cells
I would consider stem cells in the future if diet and lifestyle don’t work and finished with having a family unless things drastically change .

Also Ccsv1 sounds good but for mat Embry he says it worked for him but not permenant but a temporary solution for relief or symptoms which shows to me their is something for ms in blood circulating round your body and not circulating properly which he combats with cardio , he runs.

Happy Saturday everyone
Rachael


strictlysoca
3 weeks ago

https://www.slideshare.net/mobile/gavingiovannoni/brain-health-guide-for-people-with-multiple-sclerosis

Hi there

There’s quite a lot of evidence in this report about brain atrophy being accelerated in people with MS even when lesions are not forming (inflammatory activity).

There are also many other studies including one that seems to equate atrophy at normal levels (we all lose when we age 🙁 ) with treatment of Lemtrada after 4 years.

Check out the Barts MS blog for various studies on brain and MS. That’s my go to for any information that I might share on here.

Btw exercise has been shown to slow disability progression and is on a par with the most useless CRAB drugs. Good news for those who can run.

All the best MSers – we all have our own path to staying well


mermaidia11
3 weeks ago

I agree with you all and yes happy Saturday everyone!
I’ve really enjoyed this debate and everyone’s input and research @strictlysoca
Yes @rachelouise, I too was impressed by Mr Embrys ccsvi story too, it made sense and the nasa neurologist with no ulterior motive, only made the argument more compelling, (despite being discredited by others thereafter)…and I’m humbled by monsieur gills @christopher_paul_gill vids, opinion, outlook and for sharing his views, experiences and eloquent turn of phrase. (And interesting life!)
A true wordsmith with provocative, intelligent points “as only the blind realise the manifest benefit of sight” beautiful.
And he also illustrated quite perfectly that there is also much more to us than MS. And much to consider for each of us, as individuals on our own unique journeys.
To hear everyone’s individual experiences and thoughts has been illuminating, thought provoking and most of all hopeful.
I’m hopeful that we can all handle what gets given to us by the MS, that the human spirit is indomitable and that there is always hope if we all never give up, keep informed, keep questioning and keep connected and talking.
None of it is a cure all at the moment I think we all agree; but patience, people power and perseverance will get us all thro…

Hello
thanks for all the comments
I did a video response as its easier than typing, sorry about the quality

I think one issue, that for instance worked extremely well for the HIV community, is radical activism to push politics, media to have correct understanding that would help lead to better treatments.
I did some very pro lemtrada videos, but again I think its early days.
Happy Easter!

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