This date might be one for the diary.
Mon 14 Dec 2015 20:30
Can You Stop My Multiple Sclerosis?
One hundred thousand people in the UK have multiple sclerosis, an incurable condition that can result in permanent disability. Panorama has exclusive access to patients pioneering a crossover cancer treatment that has enabled some MS sufferers with paralysis to regain their movement.
I suppose we have to wait for the programme to air before we get many more details.
Were Barts looking at it recently? I seem to remember reading something about it on their blog (most of which goes over my head, I have to say)
The Barts Blog has covered this treatment a fair bit lately and a quick search should reveal the details. Fortunately, there is usually a useful summary at the end, or I would be lost too.
There is a handy facebook page, which covers the UK developments.
Thanks for the heads up, will stick a reminder in.
Just to warn you, this is a programme about HSCT as a miracle cure. From the research I’ve done on the subject, it is that for some people but (a) there are risks involved; (b) as usual, it works better for people who are younger, haven’t had the disease so long and who are not much disabled when they are between relapses.
I am very keen to see this programme. But I have heard about a lot of miracle cures in the sixteen years that I have had MS. None of the ones I have tried have done much for me. More importantly, I haven’t died from trying any of them but that seemed to me a definite possibility with HSCT. Sorry to be a misery.
I got really interested in HSCT and joined the forum,but was made to feel silly when i said that death was too big of a risk,for me, to take they seemed to play it down.
I know Panorama has gone downhill a lot over the years, but I’d still be very surprised and disappointed if it was promoting anything as “a miracle cure” without fully exploring the reality, and the pros and cons.
I haven’t seen it yet, of course, but would expect the programme to take a sceptical stance, and be asking whether it’s really a “miracle cure”, or promoting false hope.
The fact it’s the subject of a Panorama programme suggests to me there’s an element of controversy, as that’s what Panorama is known for.
If they are simply going to present it as an exciting medical breakthrough, without looking at any possible pitfalls, or whether anyone is being misled, to me, that’s not really the essence of Panorama.
Some people seem to hold “fundamentalist” views about certain treatments, in almost the same way some others do about religion.
Anyone who expresses doubts or reservations is viewed as some kind of heretic.
I’m super pleased HSCT is making an appearance on UK TV. I really hope it reaches MSers far and wide as that’s what’s needed to push the treatment in the UK.
HSCT is available on the NHS if you meet the criteria. I’ve made contact with the team in London as its my plan B. You need a referral from your neuro, I’ve spoken to mine and he’s agreed should the time come.
More info from this web site:
Not for us progressives, by the sounds of it
Here are some facts from the MS Society info on HSCT - web address in the post above this one (at https://www.mssociety.org.uk/ms-research/emerging-areas/stem-cells/AHSCT)
"the largest and most up-to-date of these retrospective studies (on HSCT) … has some limitations, but provides the longest-term follow up of all studies, with an average of 6.6 years. The study looked at 281 people who had received AHSCT for any type of MS between 1995-2006. 78% had progressive forms of MS and the average EDSS score prior to treatment was 6.5. Almost half of the participants didn’t see any worsening of disability for 5 years after AHSCT.
Better outcomes were seen in younger people, people with relapsing MS and people who had received fewer types of disease-modifying therapy prior to treatment. Improvements in neurological function during the 12 months following transplant were reported in 52% of people with relapsing MS and in 31% of people with progressive MS.
This study also highlighted the higher short-term risks of HSCT compared with other MS treatments, finding treatment related mortality of around 2%. To put this into context, on average, there were two fatalities for every 100 people receiving treatment. However, in the more recent years the data showed a fall to around 1.3%."
Doesn’t it sound great? Even for progressives. But more than 1 in 100 people who have it then die from it. I betcha you won’t hear them saying that on Panorama…
It looks like this programme has been rescheduled, so best to check for the new date.
I’m guessing there’s currently some bigger stories across the globe at the moment.
Just to let you know Panorama have been in touch, the documentary on MS and stem cell treatment has now been pushed back from Monday 14 December to Monday 25 January.
The broadcast is now scheduled for 11 January, which might even be a firm date.
this is real. Trials at Sheffield and going limited mainstream at Kings and possibly Charing X. Yes just for RRMS but has been used with success for PPMS & SPMS at overseas clinics (thousands of times) which there are many reputable ones it is now all an overseas bed of cowboys. This is not new this has been going on for 15 years. It is the drugs companies and conservative neuros holding this back. They are effectively sentencing people like us to a decline which is a disgrace
plenty of good information on various Facebook groups
Sure Panaroma will pitch it as new but it is not new it is only new in UK/developed world. Sure it will have been watered down by Big Pharma but will show there is a way to deal with this monster than the template.
this has been shown to STOP progression in 80%+ of cases vs DMDs that at best SLOW progression. Yes there are risks maybe c1% mortality but DMDs are hardly fail safe. If you are lucky there can be some improvements. Numerous stories available. This is real and impactful and can not only improve quality of life for patients but within 2 years be saving the government money on DMDs however the issue is UK has a low % of those on DMDs so any savings are not real
we need to start being advocates for this collectively with our respective health care teams but this treatment uses techniques outside the cre knowledge competency of most neuros it is a haematology field hence most neuros will dismiss it but without any good factual or scientific back up
HSCT is being offered on the NHS in England. You can read about it and the eligibility criteria here: HSCT - Everyday living - MS Society UK | Forum