I have been a bit depressed by the thought of how many people are going to see Panorama tonight and tell me about the ‘cure’ for MS that it describes. Then I feel mean because these are friends who would really love to see me better.
So I came up with the idea of HSCT Panorama bingo. Let’s see who gets the largest number of people telling them about the programme, either before or after. I’ve had two people telling me the programme is on tonight, so far. Does anyone else want to play? What’s your score so far?
Oops - actually, I’m equalling your tally of two, because I forgot my mum tipped me off about it when it was first scheduled, a few weeks ago. I had to explain to her I won’t be putting my name down.
Ive had 1 so far....and I havent even got MS!!! When I thanked the person for thinking of me, she said Oh I forget you dont have MS anymore!!!`
As most of you know, I have HSP and we have an HSP group on facebook. Around the time the Panorama programme was due to air, but didnt, lots of HSPers were wondering if the new cure could help us. We were reminded that HSP and MS are quite different in what they do to us, yet some of the symptoms are very similar.
None and not expecting any. I have been telling friends and family that this is the closest thing we have to a cure for a couple of years, so managed to bore them all first.
my friend just phoned me to tell me about it, her Mum had MS, so she takes an interest in mine, she was a bit upset when i told her that i dont think at my stage of MS i would be even offerd it, i told her its for people that are not long diagnosed.
Hi Sewingchick. No one so far has told me about the Panorama program Boo Hoo !!! but my family or shall I say my partners family do like to bang on about the drugs and treatments I should be on for MS when they know nothing about the condition and have no medical qualifications. I just laugh now because as I say everyone seems to bean expert.
Hi, one phone call & two texts this morning about Panorama program. My friends/ family mean well but at my age 60 I don’t expect it will be offered to me. I hope it becomes widely available to the young who want it & that it does prove to be a long term cure!!! Helly x
Two texts in the last hour and three people asking me in person about the programme… I’ve just told them all thanks for the tip off, but I’m nowhere near bad enough to warrant the risk of it just yet. But it is good to know that they’re working on it - a time may come when I’ll need it!
Yes, they are increasingly peddling “news stories” that, in reality, are just trailers for forthcoming programmes.
This therapy isn’t new - only the programme about it is. It was certainly an active research area, even when I was diagnosed, over five years ago. Obviously, with any “new” treatment, there are always new findings and new developments to report, for years and years, but the BBC are acting as if news of this only broke yesterday.
They themselves have rescheduled the programme at least twice - it was supposed to have been on weeks ago - so that shows it can’t be “breaking news”.
Ha great idea, my MS pals have been waiting to see it since it was first advertised. Today I have had one person tell me face to face, 2 text me and 1 email.
It has made me really sad I would love it to be true not had a great weekend, my legs have been letting me down. Just feel exhausted it makes me not want to leave the house tomorrow. I find it hard being told how good I look everyday, if people start telling me I’m gonna get cured I don’t think I can handle it.
I do know what you mean as people say to me you don’t look ill. What they don’t seem to realise is it takes a lot of energy and effort just to look reasonable. My legs let me down all the time.