Norwegian Research Council with 30 mill NOK (3,7 mill USD - 2.9 mill GPB) to ME-research

Kalliope

Kalliope

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The Norwegian Research Council just announced that there are 30 mill NOK available for ME-research. An English version of the article will arrive soon, according to their website.

Requirements for applications are that the Canadian criteria are used, exclusion of patients with other explanations of fatigue (such as psychological illnesses), objective measures of interventions, research which might lead to a biomarker, applications building on existing knowledge. National and/or international cooperation across professions is important and will be regarded as positive.

They are asking for applications on
1 Aetiology
2 Treatment
3 Identification and prognosis
4 Care and follow-up

Applications must be written in Norwegian.
 
slysaint

slysaint

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Kalliope said:
Requirements for applications are that the Canadian criteria are used, exclusion of patients with other explanations of fatigue (such as psychological illnesses), objective measures of interventions, research which might lead to a biomarker, applications building on existing knowledge. National and/or international cooperation across professions is important and will be regarded as positive.
Click to expand...

See it can be done. MEGA organisers take note.
 
Simon

Simon

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So as well as putting money into the Rituximab trial, Norway, a tiny country relative to the UK, has just put up more money for mecfs research than all the major uk funders have put into biomedical mecfs research - ever. It really is time the UK funders took this illness seriously.
 
R

RogerBlack

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902
Jill said:
Well how bout some other country doing rituxan trials . Eg Uk, or maybe NZ .
Click to expand...
I question if a trial is needed.
The Norway trial of ~150 patients and controls is to report back next year.
It seems clear from the prior work that it's not a 'cure' for most.
It very significantly benefits probably over half of people taking it.

However.
A percent of people get quite serious reactions to it.
About one or two a thousand get PML - which is a severe, often fatal condition called PML - Progressive multifocal leukoencephalopathy.

This is not a hugely safe drug.
It is possible or perhaps probable the Norwegien tial will give better data on responders to this, and subgroups for who it's appropriate in.

It's even possible that the 'Elite responder' effect may dissapear on the larger blinded trial, though I don't consider this likely.
But, if you can identify that quarter of responders by some marker - or indeed the half that won't benefit at all, this is vitally important before starting to treat many, or indeed doing a much larger trial.

A trial of 500 patients likely will have one die due to treatment.
 
Cinders66

Cinders66

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494
Heartening news, we so need multiple research teams in every developed country. Example to rest of the world. I'm quite surprised by the relatively short time frame too. State funders offering up guaranteed money is the best way to draw in drs quickly and saves time them applying for rounds of funds or crowdfunding for cash which can take years.
 
Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
RogerBlack said:
I question if a trial is needed.
The Norway trial of ~150 patients and controls is to report back next year.
It seems clear from the prior work that it's not a 'cure' for most.
It very significantly benefits probably over half of people taking it.

However.
A percent of people get quite serious reactions to it.
About one or two a thousand get PML - which is a severe, often fatal condition called PML - Progressive multifocal leukoencephalopathy.

This is not a hugely safe drug.
It is possible or perhaps probable the Norwegien tial will give better data on responders to this, and subgroups for who it's appropriate in.

It's even possible that the 'Elite responder' effect may dissapear on the larger blinded trial, though I don't consider this likely.
But, if you can identify that quarter of responders by some marker - or indeed the half that won't benefit at all, this is vitally important before starting to treat many, or indeed doing a much larger trial.

A trial of 500 patients likely will have one die due to treatment.
Click to expand...

I also think a trial should wait until phase 3 results are clear.

By the way: No one in the literature have gotten PML by rituximab alone. The ones u refer to were old (the immune system gets "weaker" and weaker the older u get), and were either on chemotherapy as well, or severe immunosuppressived from having it in the past. Neither does serious reactions with rituximab alone seem to be frequent (based on what is reported in the fb-group with pasients taking it privately), I have yet to see it reported.

Based on this I would disagree and rather state that rituximab taken alone is hugely safe compared to almost all other treatments of chronic conditions. our bodies does not heavily rely on b-cells in the blood.
 
TiredSam

TiredSam

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German footballer (Olaf Bodden) was given rituximab 20 years ago, reacted allergically and never recovered, he's currently in a wheelchair and hasn't left his flat for 18 months. I heard somewhere that's the reason the Charite don't try rituximab on CFS patients.
 
Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
TiredSam said:
German footballer (Olaf Bodden) was given rituximab 20 years ago, reacted allergically and never recovered, he's currently in a wheelchair and hasn't left his flat for 18 months. I heard somewhere that's the reason the Charite don't try rituximab on CFS patients.
Click to expand...

yes but he really does seem to be a 1 in 50 case or something the like. i think we must accept that when we try to get rid of a disease that completely alters your daily function
 
BurnA

BurnA

Senior Member
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2,087
Marky90 said:
yes but he really does seem to be a 1 in 50 case or something the like. i think we must accept that when we try to get rid of a disease that completely alters your daily function
Click to expand...

1 in 50 doesn't exactly reassure me! Chances of getting ME are a lot lower than that I imagine, and look how that worked out for all of us :)

But anyway this thread shouldn't end up being another rtx discussion - it's about Norway spending more money on ME and they are the only country actually doing an RTX trial !
 
Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
BurnA said:
1 in 50 doesn't exactly reassure me! Chances of getting ME are a lot lower than that I imagine, and look how that worked out for all of us :)

But anyway this thread shouldn't end up being another rtx discussion - it's about Norway spending more money on ME and they are the only country actually doing an RTX trial !
Click to expand...

Well there are varying degrees of getting worse, the bodden case seems to be very rare

didnt work out great

at least we didnt get elephantiosis or zombie disease (just something that mimicks it)
 
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