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HSCT Panorama Bingo

Well, Shazzie, it all depends if tou are a properly licenced blonde.

I ignored the link, and set out to find the criteria for myself. The details on the Sheffield Hallamshire Hospital page sent me to the US Government page relating to Dr Burt’s trials at Northwestern U in Chicago. The first thing that leapt out at me was a blunt statement that the maximum EDSS score was 6.0. This means that if you need two sticks (or crutches) to walk, or are in a wheelchair. you would be excluded.

My guess is that they only want experimental subjects where there is a good chance of being able to produce a good result, so the guy who was hit really hard was accepted even though he was in a w-chair. Reminds me of when I worked for a Government Agency where the “Ethics Committee” reviewed each experimental proposal - the main criterion was whether the statistical test(s) proposed would produce a significant result. A strong case of “Will the results make us look good?”.

Regardless of how they apply the criteria, it does look like a most excellent treatment, so if your MS is recent and aggressive and you have already tried a DMD, and your consultant will refer you, then it could be worthwhile considering. It is definitely out for me: too old by 13 years, SPMS, so there are two NOs for a start.

Geoff

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Of course I’m a true blonde Geoff. Although the conditioner I put on my hair every 6wks does have that very strong smell of ammonia Mmmmmm

Thanks for the explanation Geoff. I get it now.

Shazzie x

My dad told me about it before it was first due to be broadcast before Christmas, and I’ve had one other heads up about it.

No ‘did you see…?’ messages yet. Waiting…

I watched the programme with my husband and 16 year-old son. They were both a bit upset by it - my son wanted to know if I could have the treatment. I explained to him that I believe the risks (something around 1 in 100 chance of dying - not mentioned in the programme) outweighed the benefits, since I am likely to be left with lots of residual disability. I found it upsetting watching the bit of the programme where the woman greets her youngish son after she’s been in isolation for several weeks. I have a child around that age and would hate to be away for them for that long.

On the bingo, I am have four people tell me or ask me about the programme so far, two before and two afterwards - Space Cowboy is definitely beating me. I see a group of friends on Friday so I may score big then.

Same here Teresa…my partner couldnt be botherd to watch it,i asked him if he was going to watch it on catch up,but dont think he will.i have learned over the years not to mention my MS …oh well nevere mind.

i had a friend rang me to tell me it was on and that she was going to watch it,her Mum had MS,and she was her carer .

J x

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Mum mentioned it to me in a phone call - she’s in her 80’s and said the new “Stencils” treatment for MS was on BBC1 - classic…made me laugh…

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Stencils…I like that!

Pollx

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Maybe I could qualify for the ‘stencils’ treatment. I’m certainly ineligible for HSCT.

I was impressed that my OH went to the gym this morning and his buddies (the ‘old boys’ gang who meet up in the mornings) had been talking about the program. They were impressed with the treatment but noticed that there was no mention of the risks or the criteria for getting it. Bless them for caring, and for thinking about it. Makes up for the fact that his gym buddies are the only ones who bothered telling me it was on!!

Sue

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Try to rise above it Teresa. It used to upset me but these days I’m more indifferent.

Last year they let me down when I had my lemtrada treatment. I drove myself to hospital but as I was going in for 5 days they agreed to collect my car. They didn’t. My friends came in the middle of the night met by a crying me to pick it up. They didn’t visit me in hospital either. Since then I’ve not asked them for anything and don’t mention my MS or various hospital appointments. It is what it is. Luckily I have amazing friends x

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That’s lovely, Redman - made my day!

Alison

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Lol Redman love it, thats something like my mum would have said,she was a proper Hilda Baker my old mum.

J x

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I scored another two today. I am still hopeful about my friends tomorrow …

I’m up to 7! Is there a prize?

whilst I’m grateful that the programme has increased awareness of MS, I think the one-sided approach of Panorama left people with the impression that stencils is a safety-free cure all.

I’m peed off that I still have MS after being “cured” by the Daily Mail at least 6 times (I don’t read this rag but my well meaning 80 something Aunt and Uncle always send me the clippings) and now by Panorama.

Derek

I scored another two today, so I think I’m winning at my own game. One of my two was a work colleague of my husband, who asked whether the treatment described on Panorama had any chance of helping me. This has been what all the other people who watched the programme have wanted to know, and I have been fine with that.

Weirdly enough, the other person who mentioned the programme today had the reaction I was fearing when I started this bingo thread, saying to me “isn’t it great news that there’s a cure for MS now?”. The reason this was weird was that the person who said it was a man who had come to my house to price up fitting a lift here. If there really was a cure for MS, he wouldn’t be getting a penny from us for a lift. In fact, I would have cancelled the appointment with him, because I will never need a lift if my MS could be cured. What a strange world we live in.

There is no prize for winning HSCT Panorama bingo, you just get a warm feeling of satisfaction. But please post if you have beaten my total of eight - you can have that warm feeling instead of me getting it.

No, no advance on my original two.

And happily, so far, no infuriating: “You’re fixed! They can cure it now!”

The friend who’d emailed me did ask me a bit more about it at college on Wednesday, but when I explained the risks - and that I wouldn’t be eligible anyway, she said: “Oh no, definitely not! I wouldn’t chance it either!” Obviously, she can see that I’m reasonably OK - making it to college every week without a walking aid. She fully understood that someone in my position wouldn’t feel desperate enough yet.

Tina

Hi Poll, didnt know you had been directed elsewhere. What is HSP?

I had two calls.

From my dad and a friend. I’d read about it and replied that like snow on the train lines, I have the wrong sort of MS!!

Interesting though.

Jenx

A few years ago - many of us were following ‘Stella’s blog’ - A very brave lady who was having HSCT. lt did not go well for her - she lost fingers and toes - plus her eyesight and hearing was effected. l believe she did have a ‘hospital bug’.

Anyone know what happened to her. l think it was in a hospital in Bristol. Her husband took over the blog when she was too ill to continue.

The only information I could find on Stella was this facebook entry a couple of years ago and she appears to be still working, with slightly improved mobility. Pity that her bravery was not better rewarded.

https://www.facebook.com/permalink.php?story_fbid=516536698409067&id=135366883192719

People seem to get very religious about “cures” for MS - they won’t look at the stats and they won’t listen to anyone who points out the risks or the failures. The Panorama programme only showed people who had done really well on HSCT. But not everyone is cured by it.