BBC: Research in Norwich could offer ME/CFS breakthrough

[deleder2k]

This is so great! Researching and sharing experiences are the key to solving this disease. Norway and the UK should continue to pursue an even better relationship in the future.

I am sorry about the quality. The feed from BBC was non-HD.

 

[Jenny TipsforME]

Wow!

 

[TigerLilea]

It will be interesting to see what good ole Simon W will have to say about this.

 

[Hutan]

This is from the BBC!
They talk about the illness as 'ME'.

Professor Simon Carding is shown saying about the forthcoming trial in Norwich:
'I think it is very exciting and promising. I think it gives hope now, for probably the first time, that there could be a treatment for this devastating disorder.'

 

[ash0787]

looks like english scientist are starting to take interest due to the evidence emerging internationally,
this and also oxford, thats good, as I said yesterday there will always be good people to counterbalance the corruption.

 

[A.B.]

Hard to believe this illness is being potrayed correctly on television. Devastating illness, no effective treatment, B cell depletion may turn out to be the breakthrough patients so desperately need. They're even showing a severely affected patient rather than a tired college student.

 

[soti]

"no effective treatment"... guess they didn't get the memo from the SMC then!

 

[sarah darwins]

Excellent stuff.

I gather this was part of a regional news/affairs programme in the Norwich region. Now we just need the story to go national.

 

[me/cfs 27931]

Repeated use of the term "ME sufferers", not "patients". Someone at the BBC understands our experience.

 

[alex3619]

The main message seems to be about the upcoming UK Rituximab trial. I really look forward to these trials. Its our best chance at a first cure.

 

[veganmua]

Ok, let me get this straight - do I have to move to Norfolk or Suffolk to participate in the trial? Could anyone in the know advise me of exactly which doctor I would need to be under to ensure I am eligible? Or could anyone tell me how I might find out this information? Moving house is a small price to pay for a chance to get my life back!

 

[deleder2k]

@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.

 

[eljefe19]

The main message seems to be about the upcoming UK Rituximab trial. I really look forward to these trials. Its our best chance at a first cure.

Do you think the fact they are doing a U.K. trial mean that the Norwegian trial is likely to be successful?

 

[alex3619]

Do you think the fact they are doing a U.K. trial mean that the Norwegian trial is likely to be successful?

Ask me in November or so. We don't know. What I will say is many are anticipating the trial will be successful. We have every reason to expect some level of success. It might not be as much as what we were hoping for ... but uncertainty works the other way too. It might be more than what we were hoping for.

 

[helperofearth123]

Excellent! Remember to upvote the video on youtube.

 

[Aurator]

It will be interesting to see what good ole Simon W will have to say about this.

"In that kind of disability, psychological factors are important, and I don't care how unpopular that statement makes me".

 

[me/cfs 27931]

The public dialogue is changing. Can you feel it?

 

[deleder2k]

I think they pretty much know whether the study will be positive or not. What is interesting is that a large number of patients has been treated privately with RTX too. We have no official data from the off-label use, but I've spoken to very many of the patients treated, and my feeling is that the multi-centre trial won't show that two thirds of patients will respond. If I would guess I would say that the response rate would be in the lower 50's. That is mostly speculation from my side. On the other hand; most major phase 3 studies tend to show a slightly lower response rates. I think that is rather common. Especially when the recruiting of patients are different compared to phase 1 and phase 2 studies. Getting a result of 50%+ would be a game changer for the perception of the disease. I don't expect the placebo response to hit 20%.

 

[perrier]

Why have some sufferers become worse on RTX

 

[eljefe19]

I think they pretty much know whether the study will be positive or not. What is interesting is that a large number of patients has been treated privately with RTX too. We have no official data from the off-label use, but I've spoken to very many of the patients treated, and my feeling is that the multi-centre trial won't show that two thirds of patients will respond. If I would guess I would say that the response rate would be in the lower 50's. That is mostly speculation from my side. On the other hand; most major phase 3 studies tend to show a slightly lower response rates. I think that is rather common. Especially when the recruiting of patients are different compared to phase 1 and phase 2 studies. Getting a result of 50%+ would be a game changer for the perception of the disease. I don't expect the placebo response to hit 20%.

@deleder2k I can shed some light, Dr Kaufman at OMI says their response rate is similar to the Norwegians.