New pilot study in the loop from the researchers at Haukeland

[deleder2k]

Of course!

 

[NK17]

Thank you so much @deleder2k for keeping us informed.
I can't wait to hear more about this other drug that Fluge and Mella would use on PWME.
I'm in a horrible flare up these days, but I'm looking forward to a new treatment, a non anti-viral one and I need all the information I can get .

 

[Freddy]

No new rumors for 3 days ...

 

[deleder2k]

The open phase 2 study is being proofread before it is sent in for publishing We're getting there. I guess it will take a few weeks before it will get published though.

 

[Freddy]

Tx deleder, you are very good informant
Do you mean the rtx phase 2 study? Not to be confused with the pilot study of the new drug?

 

[NK17]

The open phase 2 study is being proofread before it is sent in for publishing We're getting there. I guess it will take a few weeks before it will get published though.

@deleder2k I really don't know how to thank you enough for keeping us informed and updated, you're our star of the north .

 

[deleder2k]

Tx deleder, you are very good informant
Do you mean the rtx phase 2 study? Not to be confused with the pilot study of the new drug?

Yes, the phase 2 study. To my knowledge the name and the project description of the drug will be released on the Regional Committees for Medical and Health Research Ethics website. I am checking their site a few times daily.. dah.

@deleder2k I really don't know how to thank you enough for keeping us informed and updated, you're our star of the north .

I think you have misunderstood. The stars are Øystein Fluge, Olav Mella, The Cancer Department at Haukeland University Hospital, @Jonathan Edwards + the rest of the UK Rituximab trial team

 

[NK17]

Yes, the phase 2 study. To my knowledge the name and the project description of the drug will be released on the Regional Committees for Medical and Health Research Ethics website. I am checking their site a few times daily.. dah.

Thanks for checking


I think you have misunderstood. The stars are Øystein Fluge, Olav Mella, The Cancer Department at Haukeland University Hospital, @Jonathan Edwards + the rest of the UK Rituximab trial team

No misunderstanding whatsoever: Mella, Fluge and everybody else involved in the Rituximab trial team are true scientists and humanists.
If I believed in angels they would be at the very top of my list, they'd be archangels , but you @deleder2k as a patient, trial subject and PR messanger, are one of the reasons to feel less alone, in the words of John Donne (and this is for @Jonathan Edwards too :

No man is an island entire of itself; every man
is a piece of the continent, a part of the main;
if a clod be washed away by the sea, Europe
is the less, as well as if a promontory were, as
well as any manner of thy friends or of thine
own were; any man's death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee.


Olde English Version
No man is an Iland, intire of itselfe; every man
is a peece of the Continent, a part of the maine;
if a Clod bee washed away by the Sea, Europe
is the lesse, as well as if a Promontorie were, as
well as if a Manor of thy friends or of thine
owne were; any mans death diminishes me,
because I am involved in Mankinde;
And therefore never send to know for whom
the bell tolls; It tolls for thee.

MEDITATION XVII
Devotions upon Emergent Occasions
John Donne

 

[OverTheHills]

I think you have misunderstood. The stars are Øystein Fluge, Olav Mella, The Cancer Department at Haukeland University Hospital, @Jonathan Edwards + the rest of the UK Rituximab trial team

But you are giving us news of something positive happening soon. Its good to have something concrete to hope for in dark times (not mentioning the current propaganda onslaught).

Thankyou
OTH

 

[Kati]

My best guess would be methotrexate which is also used in the rheumatology population. But who knows.

 

[deleder2k]

I don't think so, but I could be wrong. Remember that it was Methotrexate that started this thing several years ago. They have known about it for years. I am under the impression that this is something "new", because I was told that they got the idea of this drug after another patient with cancer was treated with it. The reason that we do not know the name of the drug yet is because they have applied for a patent. Since the story (and name) about Methotrexate has been known for years I think we're talking about something else.

 

[Kati]

But Methotrexate has not been trialed formally in Me population. Nothing has been tried formally.
i am very willing to be wrong, however, I don't mind a bit which drug they are trying, I just hope it works and I hope it provides options for patients. i wish there was access to such trials internationally just like cancer trials are open to many countries and regions.

 

[deleder2k]

Hm, I guess someone knows more about it. I really have no clue, but when speaking to one of the doctors at Haukeland I was under the impression that this was something "new". I hope we know the name in a couple or weeks. My patience is running out!

 

[Kati]

Hm, I guess someone knows more about it. I really have no clue, but when speaking to one of the doctors at Haukeland I was under the impression that this was something "new". I hope we know the name in a couple or weeks. My patience is running out!

It's tough to be patient. I keep on wondering how I can utilize my time in the meantime. Distraction can be the best of medicines...

 

[RL_sparky]

A brief mention of the study in an interview with Cort Johnson:

New Open Phase-II Trial
"After observing a few pilot patients for one year, we have decided to begin another open-label phase-II study in Spring 2015 on another immunomodulatory drug, in three sets of ME/CFS patients: ME/CFS patients who have not treated before with rituximab, in nonresponders to rituximab treatment, and in patients with a clear response to rituximab but with evidence of gradual relapse the last year. This study has been approved by the Ethical Committee, and will occur at a single center study in Bergen" (Haukeland University Hospital)

http://simmaronresearch.com/2015/01...ronic-fatigue-syndrome-rituximab-fluge-mella/

 

[deleder2k]

Very interesting. We have to wait for the ethical committee. It will be made public here: https://helseforskning.etikkom.no/ikbViewer/page/forside?_ikbLanguageCode=us

 

[greeneagledown]

A little disappointed that the next study with this "new" drug will be open-label, but maybe it's not reasonable to go from a 3-patient study immediately into a placebo-controlled study. And I guess it makes sense to first try to figure out which type of patients (rituximab responders versus rituximab non-responders) are the ones who respond to this new drug and then focus on that type of patient if and when they progress to a placebo-controlled trial.

 

[deleder2k]

I agree. The positive thing is that the drug works much faster than RTX. That means they will get answers faster,

 

[Snow Leopard]

Could this be one of the newer anti-cancer drugs maybe? There are some interesting targeted drugs out there, including monoclonal antibodies directed towards particular receptors etc.

Just my thinking in line with their investigations of Endothelial dysfunction, maybe they know something else that I don't... (Endothelial dysfunction is a likely consequence to some of the autoimmune hypotheses that I have considered)

 

[Adele]

And there it was. Cyclofosfamid. Thank you @SaraEngland
https://helseforskning.etikkom.no/i...525361&p_parent_id=527700&_ikbLanguageCode=us