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BBC: Research in Norwich could offer ME/CFS breakthrough

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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
nikefourstar said:
They are evil drug company's, even if they had a cure they wouldn't sell it. Because then after everyone is cured there is no money left to be made. The best chance we have to a cure is Ron Davis... bless that beautiful man and his family @Rose49
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Rituximab has been used for years to treat rheumatoid arthritis and is readily available - https://en.wikipedia.org/wiki/Rituximab. The best chance we have is that as many groups as possible attempt to find as many ways as possible to treat us, that way as much knowledge as is possible is gained as to what ME actually is. There's no need for any conspiracy theory hate on anyone using Rituximab, if they wanted an easy life Fluge and Mella could easily have stayed in oncology which is where they started.
 
Dechi

Dechi

Senior Member
Messages
1,454
Murph said:
Wow, that's pretty amazing and exciting that the Sandnes clinic treating patients, even before the Phase III trial is done. I'd like to see their data.

Even though it won't add to the formal body of evidence, it will add more to the generic body of knowledge about the use of Rituximab. My initial reaction is to be pleased they're offering it, but I really hope there aren't bad side effects that could make authorities crack down...

20,000 NOK is about $A32,000. Not cheap. Especially for an Australian considering travel costs. Out of reach, really, for me. I shall wait and see.
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Are you sure ? 1 NOK is 0,15$ CAD so 20000 NOK is 3 175$ CAD. It should be a lot less in USD.

Oh, I get it, you're talking Australian dollars... Sorry !
 
deleder2k

deleder2k

Senior Member
Messages
1,129
Dechi said:
Are you sure ? 1 NOK is 0,15$ CAD so 20000 NOK is 3 175$ CAD. It should be a lot less in USD.

Oh, I get it, you're talking Australian dollars... Sorry !
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He is missing a zero. "20,000 NOK is about $A32,000" That is wrong. 200,000 NOK is about 32,000 kangaroo dollars :)
 
Murph

Murph

:)
Messages
1,799
AndyPR said:
So there is nothing else after the 12 month dose, that's it, it either works or it doesn't.
....
Constant infusions don't happen and, so far, it is not a cure for the vast majority of people treated.
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You're spot on that so far, the number of infusions has been limited. But my understanding of how Rituximab is used to treat RA is that you some patients get 6 monthly infusions in perpetuity.

http://www.rituxanforra-hcp.com/dosing/6-month-interval

Obviously the research is at an early stage but I don't think we can rule that out as a possible approach for some people with this condition. Only a minor group of patients was cured in a once-and-for-all fashion by Rtx.
 
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Jo Best

Jo Best

Senior Member
Messages
1,032
We can now hear the public talks (and see the slides) that were given on the same day of the BBC Look East news report. The talks were introduced by Dr. Ian Gibson and the speakers were Simon Carding (Norwich), and Kari Sorland, Ingrid Rekeland, and Øystein Fluge.

The video has been added to this page on Invest in ME Research - http://www.investinme.org/IIME-Newslet-1701-02.shtml - on which the charity wrote,

"The visit by the Norwegians showed the excellence of their research, the modesty of the Norwegian researchers regarding their achievements, and the integrity behind how they conduct themselves - both in the public eye and in the research workshops. Quite simply they were impressive, admirable and honourable ambassadors for Norway in all ways and it was our great pleasure to be their hosts."

The video is on the Instiute of Food Research YouTube channel and the link is also in this article - http://www.ifr.ac.uk/news/latest-news/2017/02/mecfs-talks-held-norwich/

The rituximab research is part of the Invest in ME Research Centre of Excellence translational biomedical research strategy which begins with the gut as the focus is on the role of infection and the immune system.

Regarding the crowdfunding of this research, supporters may donate to specific research projects or to the general biomedical research fund. Some quick links to donate to this research -

Rituximab Trial for ME on JustGiving - https://www.justgiving.com/fundraising/ritux4meuk

UK text RTUX66 (£1-£5 or £10) to 70070

Gut Microbiota in ME research on JustGiving - https://www.justgiving.com/fundraising/gutmicrobiome

UK text MEGR66 (£1-£5 or £10) to 70070

Invest in ME Research Centre of Excellence for ME on BT mydonate - https://mydonate.bt.com/charities/iimer
 
Jo Best

Jo Best

Senior Member
Messages
1,032
@deleder2k yay! I'd love, thanks to the excellent and dedicated researchers in both, to visit the beautiful country of Norway and the fine city of Norwich one day! Meanwhile, it's 'housebound in hope' :)
Norway to Norwich Prod V05a.png
 
Jo Best

Jo Best

Senior Member
Messages
1,032
From Invest in ME Research newsletter 12th February 2017 -

FROM NORWAY to NORWICH - POSTSCRIPT

The workshop to plan the UK rituximab trial took place in Norwich Research Park as planned with members of the Norwegian Haukeland University Hospital RituxME team visiting the UK research team at the end of January.

Dr Øystein Fluge, Kari Sorland and Dr Ingrid Rekeland joined with the IiMER-funded researchers, including Professors Simon Carding and Tom Wileman, Professor Angela Vincent and Dr Jo Cambridge and Fane Mensah. Others from the Norfolk and Norwich university Hospital, Clinical Trials Unit and the local ME service attended and a very interesting and productive workshop took place. We were pleased to have Chris Armstrong present for part of the discussions. Chris has been in London working with Fane.
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BBC INTERVIEWS on CENTRE of EXCELLENCE

Following the workshop the researchers transitted to Norwich to hold a public lecture on the Centre of Excellence being enahnced in Norwich and the Norwegian rituximab trials.

Over 160 had registered for the event and we had arranged for the Institute of Food Research (IFR) to film the event.

Great work by Andrew Chapple and Andy Walker from IFR have now completed the video and this is available on the IFR YouTube site here https://youtu.be/r9k5QrdtjEU

At the suggestion of Invest in ME Research the BBC used the opportunity of the visit by the Norwegian team to interview Dr Fluge and Professor Carding about the rituximab trial and research and the developing UK Centre of Excellence for ME at Norwich Research Park.

IiMER also provided some suggestions for patients to be interviewed to help viewers understand the effects of ME. This is not an easy thing to do - people being interviewed give out their lives for all to see and it takes a very special courage to do this in order Two very courageous patients, Charlotte and Rosalind, did just this.

With professional and sensitive journalism - something that has not been associated with other BBC handling of ME in the past - the BBC Look East team produced some of the best tv coverage of ME that has been seen in a long time.

The links to the BBC programmes are here -

Everyone was impressed by the Norwegian team and we are very pleased to welcome them all back in May when they particpate in the 7th Invest in ME Research Biomedical Research into ME Colloquium.

Although Invest in ME Research has been highlighting plans to establish a Centre of Excellence for ME for some years, and although our supporters have been raising funds for the UK rituximab trial since we announced plans for that in 2013, it has suddenly been seen by many more people to have become the reality we have known for some time.

And that is fine - "....... a hundred acorns are sown in silence by an unnoticed breeze."

A couple of days in Norwich to redefine ME in the media and research- click here.
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The ramping up of capacity and research at the UK Centre of Excellence for ME is now the objective and is underway. Five PhDs are now involved in research (at Norwich Research Park and UCL).

We hope to fund more medical students to participate in research by intercalating in their medical studies for a year.

This has proved to be extremely effective at expanding research capacity, increasing knowledge and overcoming prejudiced views about ME which have been allowed to be built up in medical curricula by the false and misleading information caused by establishment policies and organisations over the years.

We also hope to fund a post-doc/Research Associate position to augment the research.

Our aim is to ensure that a strategy of biomedical research produces results as quickly as possible.

For this we need help and support - this is the best opportunity for UK research.

We invite support to raise funds and awareness for this enterprise.

#CofEforME #letsCresearch
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Our thanks to all those who have donated to the Centre of Excellence, the gut microbiota studies, the medical students and to our research fund. Also to those who have donated or pledged funds for the rituximab trial/B-cell research - including organisations and individuals from around the world - with no strings attached but just a wish to have high-quality biomedical research carried out.

The other research at the Centre - which started with the foundation project - is underway - more details here.

It is good to see that more acceptance and support of the UK Centre is increasing.

But we do welcome more support - ways to help us are here or our Big Give link here.
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dangermouse

dangermouse

Senior Member
Messages
430
Invisible Woman said:
I love that Prof Carding pointed out that this research has been almost entirely funded by patients themselves.

So at odds with the BPS narrative of false illness beliefs and the condition being maintained by secondary advantages such as benefits.

These are the very patients who are donating what little they have to research because they want to get better.
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Exactly, well said. :thumbsup:
 
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