Invest in ME now fundraising for a Rituximab trial!

[Min]

IiME have just issued the following statement and the MEA are not listed as supporters of this trial:

We made it clear from the start that we welcomed support, funding and pledges from anyone seriously interested in progressing the IiME/UCL project and that we would inform those who supported us of the status with current information as we proceeded.
We made contact with some charities.
Those organisations that have supported us are seen on our support page on the UK rituximab trial web site here - http://www.ukrituximabtrial.org/IIMEUKRT Funders.htm
The preliminary study has now gone through our external peer review process and is almost through the final stages of UCL administration processes. We shall report more on the project in a later newsletter.

Our fundraising continues as usual for our planned rituximab trial.

Thanks to all our supporters for the great work that has been accomplished.

 

[Sasha]

IiME have just issued the following statement and the MEA are not listed as supporters of this trial:

I don't think IiME ever listed the MEA as supporting the trial. You'd have to ask them why not - I've no idea.

 

[Min]

I don't think IiME ever listed the MEA as supporting the trial. You'd have to ask them why not - I've no idea.

Maybe because they are not?

 

[Sasha]

Maybe because they are not?

I've explained why I think they are - and I think I'll just leave it at that.

 

[Battery Muncher]

Sorry, my brain is not working well. To clarify -

1) the MEA want to know if the trial has been set up properly. If it is set up properly they will donate £60k.

2) But the details of the trial have not yet been finalised.

3) The details of the trial will only be finalised after Prof. Edwards does a pre-trial study. (To 'test the waters'?)

4) So the MEA will only donate after Prof. Edwards completes the pre-trial study AND the actual final trial. Because it wants to look at the details of the final trial.

5) This should be straightforward. No problems are expected.

Have I got this right? Also, when does Prof. Edwards expect to have the pre-trial study done?

 

[Sasha]

Sorry, my brain is not working well. To clarify -

1) the MEA want to know if the trial has been set up properly. If it is set up properly they will donate £60k.

Yes. [Edit: as a pledge, I don't know if they'd wait until all but £60k was in.]

2) But the details of the trial have not yet been finalised.

That's right.

3) The details of the trial will only be finalised after Prof. Edwards does a pre-trial study. (To 'test the waters'?)

Details of the pre-trial study haven't been released but its results will inform the design (and possibly the size) of the trial itself.

4) So the MEA will only donate after Prof. Edwards completes the pre-trial study AND the actual final trial. Because it wants to look at the details of the final trial.

No - the MEA want details of the trial's protocol - that is, its exact design - before it will release the funds to UCL. Then, presumably once the full amount (not yet announced) is raised, including the MEA money, the trial will proceed.

5) This should be straightforward. No problems are expected.

That's right.

Also, when does Prof. Edwards expect to have the pre-trial study done?

He gave an update recently on the gigantic thread about the trial - I'm afraid I can't remember what he said.

 

[Min]

Thanks BM and Sasha, now I understand , please excuse the brainfog.

 

[Battery Muncher]

Thanks for clearing that up Sasha! That was a very helpful answer

 

[Battery Muncher]

@Min No excuses needed, we're all having problems here!

 

[amaru7]

I wish that they would change the study to something else and focus on mitochondria cause I believe this is the main culprit in cfs.
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

As I've mentioned in the Charité - one of the most prestigious clinics in Berlin Germany with a reputation- rituximab had been a failure in the immunology study of Prof. Scheibenbogen and usage it left many patience worse off. They stopped investigating it.

 

[Sasha]

I wish that they would change the study to something else and focus on mitochondria cause I believe this is the main culprit in cfs.
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

As I've mentioned in the Charité - one of the most prestigious clinics in Berlin Germany with a reputation- rituximab had been a failure in the immunology study of Prof. Scheibenbogen and usage it left many patience worse off. They stopped investigating it.

Every time a campaign starts up to fund any study, people want the investigators to drop their own research plans and investigate someone else's theory.

That's not going to happen, I'm afraid - researchers research what they're interested in and what they specialise in.

But if Dr. Myhill wants to design a trial or team up with researchers to design a trial on mitochondrial function, she can - and can then set up an appeal for funds. If you want that to happen, you can encourage her to do that.

I had thought that Prof. Scheibenbogen had been seeking funds for a Rituximab trial, but maybe that information is out of date. Have you seen a published report of her Rituximab results from the immunology study? If so, it would be helpful to discuss them on the main Rituximab thread:

http://forums.phoenixrising.me/inde...ximab-trial-30-july.24499/page-43#post-446844

Professor Edwards, who is leading the UK trial, posts on that thread so you can tag him and get direct answers to your concerns.

 

[Sasha]

I wish that they would change the study to something else and focus on mitochondria cause I believe this is the main culprit in cfs.
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

As I've mentioned in the Charité - one of the most prestigious clinics in Berlin Germany with a reputation- rituximab had been a failure in the immunology study of Prof. Scheibenbogen and usage it left many patience worse off. They stopped investigating it.

Every time a campaign starts up to fund any study, people want the investigators to drop their own research plans and investigate someone else's theory.

That's not going to happen, I'm afraid - researchers research what they're interested in and what they specialise in.

But if Dr. Myhill wants to design a trial or team up with researchers to design a trial on mitochondrial function, she can - and can then set up an appeal for funds. If you want that to happen, you can encourage her to do that.

I had thought that Prof. Scheibenbogen had been seeking funds for a Rituximab trial, but maybe that information is out of date. Have you seen a published report of her Rituximab results from the immunology study? If so, it would be helpful to discuss them on the main Rituximab thread:

http://forums.phoenixrising.me/inde...ximab-trial-30-july.24499/page-43#post-446844

Professor Edwards, who is leading the UK trial, posts on that thread so you can tag him and get direct answers to your concerns.

 

[amaru7]

I have no contact to Dr myhill in Wales and if my memory serves me right I think she already has done a study on the mitochondrial aspect. As for proof. Scheibenbogen, I cannot provide you with any documents. All I can tell you is that I went myself to the Charité (600km drive, man that was exhausting) for immunological check up and the Dr . herself told me that research with rituximab had been halted due to unexpected negative outcome and they're never going to use it in treatment.

I mean the money is there and imo wasted already that's sad but not my issue here. I just wish for the patients not to get harmed like the ex-soccer player Olaf Bodden who took rituximab out of study on his own risk and it left him more sick and debilitated and many others within the clinical trials as well.

 

[Firestormm]

I have no contact to Dr myhill in Wales and if my memory serves me right I think she already has done a study on the mitochondrial aspect. As for proof. Scheibenbogen, I cannot provide you with any documents. All I can tell you is that I went myself to the Charité (600km drive, man that was exhausting) for immunological check up and the Dr . herself told me that research with rituximab had been halted due to unexpected negative outcome and they're never going to use it in treatment.

I mean the money is there and imo wasted already that's sad but not my issue here. I just wish for the patients not to get harmed like the ex-soccer player Olaf Bodden who took rituximab out of study on his own risk and it left him more sick and debilitated and many others within the clinical trials as well.

Morning

Not that it matters I don't suppose but I exchanged emails with the Professor in August last year, to enquire if the heralded Rituximab Study in Germany would take place. She replied:

I had been trying to organize a Rituximab trial in Germany, but I doubt that we get it running soon, so we may just wait and hope that the Norway trial will result in an European licence.

I think that she (and others) felt that they might just as well wait and see what happens elsewhere. But of course she may have implied differently in your conversation - though as far as I know there are no health warnings preventing the use of Rituximab (other than those we know about).

 

[Min]

Invest in ME are a tiny charity run by three volunteers, they cannot fund everyone's desired research.

The money for their research is mainly collected a pound at a time from patients themselves whilst the UK government throw millions at research into psychobabble. They are doing their best.

 

[amaru7]

I think that she (and others) felt that they might just as well wait and see what happens elsewhere. But of course she may have implied differently in your conversation - though as far as I know there are no health warnings preventing the use of Rituximab (other than those we know about).

I don't know as I didn't dig into details on Rix, I can just tell you what she said plus I had contacted Mr.Bodden and his Rix experience was devastating. Luckily for him, at least he was able to earn enough money before onset so that he's able to afford support unlike many of us and that's how he put it himself. He's aware that some are even in a worse situation than he is

 

[Blue]

Yes, Olaf Bodden reacted badly to Rituxan but we shouldn't forget that many norwegian patients improved substantially with it. This is reason enough in my opinion to do further clinical trials with RTX like the Norwegians or IiME are planning. It's scientific groundwork which is now going to be done which lacks in many other scientific fields in ME/CFS: Phase III trials, Multicenter-Trials, to prove or disprove the original hypothesis, nothing more, nothing less. I think we should be glad that these trials are going to happen. We can't rely on single cases or anecdotes.

 

[Cheesus]

Can someone just clarify something for me (fatigue and brain fog are preventing me absorbing information). MEA said they would donate 60k to the trial once they had seen a preliminary trial done? The trial is now at £291k of £350k total, so including the MEA's 60k we are there?

Shouldn't we be full steam ahead to get the preliminary trial going? I don't know how these things work...

 

[Cheesus]

Also, just so you guys know, I have my lottery ticket bought for this evening so when I win I'll fund both this and Lipkin's study

 

[Firestormm]

Can someone just clarify something for me (fatigue and brain fog are preventing me absorbing information). MEA said they would donate 60k to the trial once they had seen a preliminary trial done? The trial is now at £291k of £350k total, so including the MEA's 60k we are there?

Shouldn't we be full steam ahead to get the preliminary trial going? I don't know how these things work...

They have asked to see the Trial protocol, not a preliminary trial. As yet UCL have not produced anything - I believe from what Professor Edwards has said (and elsewhere), the documents are being processed. Also it is not clear yet what amount of money will be needed by the study before the actual Trial commences. The £350k is an initial target: and they hope to conduct a study before the Trial that will be a part of it... but a study that personally I can't wait to see