BBC: Research in Norwich could offer ME/CFS breakthrough

[Jo Best]

It looked as though she was wearing headphones (although could be noise damperners) and she will be using wifi to connect to the ipad. All very bad! It's not what you need when you are this ill.

On top of that she isn't getting much natural light probably due to sensitivity but the environment she's in 24/7 sucks.

Yes they are ear defenders, and she has only recently got her ipad after several years of a relapse into very severe ME, and she can only be online for a few minutes each day so she isn't getting a lot of wifi exposure.

 

[Jo Best]

When the only activity Rosalind could do was to listen to audio books for 15 minutes a day, she did a Listenathon to raise funds for the research - https://www.justgiving.com/fundraising/Rosa-listenathon

Rosa's story on JustGiving -

Thanks for taking the time to visit my page. A fellow member of the Let's Do It For ME fundraising team for Invest in ME Charity has written this on my behalf as I am too ill to do it myself. I have very severe ME. I got ME at the age of 8. I am now 24. Like some other serious illnesses, ME can fluctuate in severity. You can see from the photos in the picture gallery that whenever well enough, I was out being involved and enjoying life to the best of my ability.

My health took a bad turn for the worse in 2012. I went into hospital and then to a nursing home, fed by naso-jejunum tube. The staff helped me and my family to celebrate my 21st birthday there by raising awareness and funds for Invest in ME to help them set up a UK centre of excellence for research and hopefully treatment. People like me with ME desperately need this.

I am being cared for at home now and can listen to audio books for about 15 minutes in the morning and cuddle my guinea pig in the evening. That is all the daily activity I can do with my current level of illness severity. I am asking you to sponsor me to listen to audio books. Thank you for helping me to help IiME.

The code for text donations is RALB55

followed by the amount (£1-£5 or £10) to 70070

Source - https://www.justgiving.com/fundraising/Rosa-listenathon

 

[TiredSam]

Even though the national news and press outlets are heavily influenced by the SMC and their henchpersons, it looks like local TV and radio in the UK can do what they like and report much more accurately. The lack of control must have Sir Well-Sly fuming in impotent fury. I predict that if the story goes national, there will be a right to reply in the interests of balance blah blah.

 

[Barry53]

The public dialogue is changing. Can you feel it?

There has to come a tipping point, and 2017 could well be its year. Avalanche effect here we come!

 

[sb4]

Yes they are ear defenders, and she has only recently got her ipad after several years of a relapse into very severe ME, and she can only be online for a few minutes each day so she isn't getting a lot of wifi exposure.

You are probably right however I would like to see her bed moved away from the walls and closer to window. Also maybe a grounding rod outside her window attached to her feet.

 

[aimossy]

You expect judgment from outside this community as a given. But to make judgement based on your own beliefs about what this young woman should be doing or not to manage her condition from within this community is a whole new level of .....

This story wasn't about what people would prefer she do to make them happy.

 

[sb4]

You expect judgment from outside this community as a given. But to make judgement based on your own beliefs about what this young woman should be doing or not to manage her condition from within this community is a whole new level of .....

This story wasn't about what people would prefer she do to make them happy.

I'm actually just trying to give advice to people who may be reading this and in a similar position that could help them get better. I thought thats what these forums are for...

 

[Dechi]

@veganmua, if you're willing to move from the Great city of London to engage in a trial where there is a 50% you'll receive placebo, perhaps you would be interested in getting treatment in Norway? 2 infusions + 4 maintenance infusions is around £16,500. The hospital is located outside of Stavanger, and you can fly from Gatwick or Heathrow non-stop. The flight time is around 1h 45m.

@deleder2k The treatment is Rituximab, right ? what is the exact name of the hospital and do you have their contact infos ? Do you know if they accept patients from Canada and all over the world ? Have you tried it yourself ?

 

[Jenny TipsforME]

I've added here https://www.reddit.com/r/inthenews/comments/5qhjem/bbc_research_in_norwich_could_offer_me/

Please upvote

Also http://m.slashdot.org/submission/6702271 to upvote

I've started sharing the BBC link now now as I think @sarah darwins is onto something there. We want the BBC to notice there's appetite for this news.

 

[Jenny TipsforME]

BTW you have to be existing patients of certain doctors in the London area to participate. Nobody should move house or hassle anyone to take part there's no point!

 

[deleder2k]

@deleder2k The treatment is Rituximab, right ? what is the exact name of the hospital and do you have their contact infos ? Do you know if they accept patients from Canada and all over the world ? Have you tried it yourself ?

They use the same drug as the Norwegians. Rituximab. The trade name in Northern America is Rituxan, while it is Mabthera in the rest of the world: http://www.rexall.ca/articles/view/1213/Rituxan

Kolibri is the name of the clinic. Their number is +47 52 69 69 69. You can also send them an e-mail at post@kolibrimedical.no. I think they have treated upwards of 200 patients. I am sure they are happy to treat any Canadian.

They are available by phone Monday - Friday from 11 pm PST, (2 am EST) to 7 am PST (11 am EST).

 

[trishrhymes]

I'm actually just trying to give advice to people who may be reading this and in a similar position that could help them get better. I thought thats what these forums are for...

I do not question your good intentions, however, it is also important to be sensitive about the context in which you offer advice. It did not feel appropriate to me for someone, simply on the basis of a photograph of a sick person, to say forcefully that she should do any particular thing, however helpful you may think it is.

Giving advice to, or about, an individual you do not know, who you know very little about, and who has not asked for that advice is not helpful, kind or appropriate, however well meaning.

If you have useful information about electrical fields, or any other aspect of treatment, I think a more acceptable and helpful way of sharing it would be to start a thread in which you share any knowledge, experience and evidence you have on this particular aspect. If you do that, I suspect it will be much better received as a helpful input. Those who are interested can then join in the discussion and share experiences.

 

[FTY]

Who do I need to bribe/sleep with to make sure I get the drug?!? (I'm mostly joking...)

HAHA!! That made me laugh, I feel you!

This is brilliant news. Go Norwich! I am so emotionally overwhelmed by the Jen Brea TED talk and now this. I need to lie down in a dark room (which doesn't make a change from normal but still!)

I think they have treated upwards of 200 patients. I am sure they are happy to treat any Canadian.]

But are there even any anecdotal success stories from anyone treated outside of the trial? I haven't heard a single one....

 

[deleder2k]

Yes. It was even on Norwegian TV. The patients that I know of are not members of this forum, nor do they write blogs, and if they do it would be in Norwegian. To give a number of how many that have improved is impossible, but I can say that someone has.

 

[sarah darwins]

Norwich, eh? Alan Partridge was right. It is the greatest city in the world.

 

[Esther12]

You are probably right however I would like to see her bed moved away from the walls and closer to window. Also maybe a grounding rod outside her window attached to her feet.

Sounds silly to me.There was never any good evidence for that grounding stuff, and I thought it had gone away?

 

[FTY]

Yes. It was even on Norwegian TV. The patients that I know of are not members of this forum, nor do they write blogs, and if they do it would be in Norwegian. To give a number of how many that have improved is impossible, but I can say that someone has.

Ah, I didn't know that. That's very heartening. Thank you.

Norwich, eh? Alan Partridge was right. It is the greatest city in the world.

Haha! Humour very much appreciated

 

[slysaint]

Norwich

look forward to the american broadcasts on it; just remembering "East An-gee-la"..................for all non UK people ..it is Norwich as in porridge.

 

[FTY]

I've added here https://www.reddit.com/r/inthenews/comments/5qhjem/bbc_research_in_norwich_could_offer_me/

Please upvote

Also http://m.slashdot.org/submission/6702271 to upvote

I've started sharing the BBC link now now as I think @sarah darwins is onto something there. We want the BBC to notice there's appetite for this news.

Well done! I just emailed Woman's Hour and asked them to cover it.

 

[ash0787]

radio waves surround us entirely, I doubt you could escape them even if you tried without some sort of underground nuclear bunker, natural light aka UV cannot pass through glass windows, even if you open the curtains or go closer to the window.