If Norwegian trial successfull

[paul80]

What do you think will happen if the fluge-mella rituximab trial is successfull?
Will it be immedially available to people in Norway?
Will it be made available to people in other countries? I kinda doubt the UK will do anything.

If it's not availble in other countries will it be possible to go to Norway for treatment? If so how affordable will it be?
I'm trying to save my disability allowance in the hope that this will be possible, but i'm unsure about so many things.

 

[ukxmrv]

people are already going abroad for treatment. Clinics in the USA and Norway are already treating patients privately. There have been other threads on this forum.

That might increase after the next trial is published or not.

Other clinics might spring up elsewhere offering treatment.

The UK trial will need to go ahead. The NICE guideline for ME and CFS would need to be revised

 

[BurnA]

What do you think will happen if the fluge-mella rituximab trial is successfull?
Will it be immedially available to people in Norway?
Will it be made available to people in other countries? I kinda doubt the UK will do anything.

If it's not availble in other countries will it be possible to go to Norway for treatment? If so how affordable will it be?
I'm trying to save my disability allowance in the hope that this will be possible, but i'm unsure about so many things.

This is just my opinion.
I would say it will be available to people in Norway - the Norwegian government have help fund the trial.


There have been discussions about this before, Dr Edwards has provided insight into what he expects. It's an unusual situation because normally an application is made by a drug company whereas this situation is different. The general consensus is that if it is approved in Norway it won't be long before it is available elsewhere assuming good data of course.

http://forums.phoenixrising.me/inde...intenance-treatment.38477/page-13#post-632813

 

[Gijs]

I think things only change when Fluge e.a. will find an objective measurement to select the
right subgroup of ME patiënts who benefit from this drug. Untill this time nothing will change even if the trial shows good results.

 

[Marky90]

I think things only change when Fluge e.a. will find an objective measurement to select the
right subgroup of ME patiënts who benefit from this drug. Untill this time nothing will change even if the trial shows good results.

I can always count on you for some good old pessimism)

On a serious note - RA-patients try various treatments even though they don`t know scientifically if they will respond.

 

[SilverbladeTE]

I don't think it would be very wise to treat patients with this en masse even if proven
except for severe cases because although it works for around 75% or so of folk, it's not permanent, nor do we know all the issues or subset that is helped?

Wiping out yer B cells isn't exactly "a breeze". I fear repeat treatments could be worse than M.E. itself in the end?
very good notation and follow up on private patients choosing this would be very helpful

Rituxumab, to me, seems to be like being left with the only choice to be able to help with a rat infestation in a house, is using a machinegun to shoot the rats in the pitch dark!
*makes like Private Pike in Dad's Army, with a Tommy Gun*
yeah it might get the job done, but it's going to leave holes in the walls, at least
and what type of rat is it, or is it a rat at all?
and there sure as heck has ot be a better tool to use!!!

changing the Establishment's attitude in the UK will take a massive sea change
as the recent horrible attack on disabled people by the government has shown (See the Budget cuts this week on disabled welfare), they really don't' give a rat's ass if we die.


best thing a positive Rituximab wide spread trial and use would do is convince the broad medical world of physical cause/treatment

 

[BurnA]

I can always count on you for some good old pessimism)

On a serious note - RA-patients try various treatments even though they don`t know scientifically if they will respond.

Knowing why or how something works is not a prerequisite for approval. A lot of drugs only work in a certain % of patients. It would be unethical not to approve on this basis.

 

[BurnA]

I don't think it would be very wise to treat patients with this en masse even if proven except for severe cases because although it works for around 75% or so of folk, it's not permanent, nor do we know all the issues or subset that is helped?

75% is probably on the high side, somewhere between 50 and 60% is more likely.

Also, the most severe cases generally don't respond to rtx and it is not recommended by f&m to treat these patients with rtx.

Wiping out yer B cells isn't exactly "a breeze". I fear repeat treatments could be worse than M.E. itself in the end?

The effects of rtx in other patient groups is fairly well understood so I don't see why you would fear this. There is no evidence to suggest this at present.

best thing a positive Rituximab wide spread trial and use would do is convince the broad medical world of physical cause/treatment

This would be a huge positive and should encourage further research. However let's not forget that a certain % of patients would also recover and gain their lives back. Hopefully some of these might even continue to advocate for ME.

 

[NL93]

Sort of off topic, but they don't include very severe patients. What do they consider very severe? 100% bedridden?
At the moment i am almost completely bedridden, spend most of the time resting in silence and darkness, but i am still able to walk to the toilet every few hours, eat, move in my bed, and just do the very basic things to survive. Would that be very severe, of just the severe category?

 

[msf]

Is this the one that finishes this year, or the one that finishes in 2018? If it´s the latter, we should know more about the causes of ME by then, as well as more about the mechanisms by which Ritux may (or may not) work.

 

[Scarecrow]

Is this the one that finishes this year, or the one that finishes in 2018? If it´s the latter, we should know more about the causes of ME by then, as well as more about the mechanisms by which Ritux may (or may not) work.

Split the difference.

It will finish late 2017 and we should know the results in 2018.

 

[BurnA]

Is this the one that finishes this year, or the one that finishes in 2018? If it´s the latter, we should know more about the causes of ME by then, as well as more about the mechanisms by which Ritux may (or may not) work.

We are probably running out of time to figure out and test why or in whom does rtx work, before the end of the current rtx trial. Ideally we would know or at least have a good idea by 2018.
I suspect some form of breakthrough will be made before then but whether there is time to verify it also would be questionable imo.

The main thing is a breakthrough in understanding how it works so if we get that it would be a huge step forward.

 

[msf]

Yes, I don´t think there will be time to verify it in terms of Ritux use by then, but I think we will know more about what kind of disease ME is, and therefore what is the most likely mechanism by which Ritux works in some people. There will then need to be more Ritux studies to confirm that this is indeed how it works.