Jen Brea interviewing Prof Jonathan Edwards today, Tues 9 Sept - what should she ask?

[Sasha]

Jen Brea is interviewing Prof Edwards for her upcoming ME/CFS documentary Canary in a Coalmine and posted the message below on FB ten minutes ago.

I have no reason to think that she reads PR so if you want her to ask your question you need to contact her via FB or her website, not here (unless someone is willing to repost - posting a link to this thread and alerting her to the discussion would presumably do the job).

https://www.facebook.com/canaryfilm/posts/454892201315185

Interviewing Professor Jonathan Edwards, who is advising Invest in ME on its community-funded Rituximab trial, today. What questions should I ask him?

http://phoenixrising.me/archives/18701


Interview: Professor Jonathan Edwards on the UK Rituximab trial​

Good luck with the interview, @Jonathan Edwards!

 

[A.B.]

I don't have a facebook account so I'm posting some questions here. These should be appropriate for a documentary meant to educate.

Why is Rituximab being studied as treatment for ME/CFS? Many people will not know about Rituximab and the story of the Norwegian patients.

Does this mean that ME/CFS is an autoimmune illness? This leads to discussion about ME/CFS most likely being a label for several different illnesses.

 

[Sasha]

I don't have a facebook account so I'm posting some questions here.

There's no guarantee that Jen will see them if you do that - I'd recommend that you go to her website and send a message via her contact form.

Can anyone here who uses FB post a link on Jen's FB post to this thread?

 

[Sasha]

BTW, Jen seems to be doing a whole UK stint at the moment (as a remote shoot) - yesterday she interviewed Jane Colby of the Tymes Trust. Looks like her FB page will be especially worth UK people keeping an eye on for a few days.

 

[Snow Leopard]

I'm not a member of Facebook, it would be great if someone could post a link (on FB) to let Jen know that this question is being asked here.

My question is along the lines of what motivated him to choose research on ME and what does he think will encourage other researchers to join the field?

 

[ahmo]

ha ha...looks like I'm not the only FB intolerant person here.

 

[A.B.]

My question is along the lines of what motivated him to choose research on ME and what does he think will encourage other researchers to join the field?

 

[Sasha]

I'm not a member of Facebook, it would be great if someone could post a link (on FB) to let Jen know that this question is being asked here.

My question is along the lines of what motivated him to choose research on ME and what does he think will encourage other researchers to join the field?

Excellent question and I'd also suggest to you to send that question via her website - the clock's ticking and I don't know what time she's interviewing Prof E. She's in NY (5 hours behind the UK).

 

[DanME]

Hi, I just posted all your questions on her Facebook thread!

By the way, why do people still think Rx is extremely dangerous and we should try natural supplements instead? I don't get it...

 

[DanME]

And I don't get why some people don't see, that at least two patients (Maria Gjerpe and the girl, who did the kayaking) are in complete remission now. Rx can have a total impact, the question is not if it works, but how and for whom.

 

[Sasha]

Hi, I just posted all your questions on her Facebook thread!

By the way, why do people still think Rx is extremely dangerous and we should try natural supplements instead? I don't get it...

Thanks, that was kind of you!

 

[Sasha]

An hour ago, Jen posted:

Thanks everyone for all of your ideas! Prof. Edwards was absolutely lovely. I incorporated a lot of your feedback and got some interesting answers to the EBV & b cell question. I am in the midst of a bad flare, so I can't for the life of me remember what was said but can't wait to read the transcripts​

Thank you, @Jonathan Edwards! Looking forward to seeing your bit in the film. We're all hoping that this film (and Ryan Prior's) is going to do big things for us.

 

[barbc56]

When is the scheduled release date for the film?

Barb

 

[Sasha]

When is the scheduled release date for the film?

Barb

Good question - I don't know!

 

[DanME]

I think, she mentioned end of 2015 once.

 

[Sasha]

On Monday Jen posted:

Dr. Charles Shepherd and Dr. Nigel Speight are absolutely extraordinary individuals. I feel so privileged to have had the chance to get to know them a little better. We are incredibly lucky to have them and so many other physicians and patients advocating for this disease.

It can sometimes feel dark and hopeless, but when I have the chance to do these interviews and to realize all of the collective passion and intelligence and commitment we have in this community, I can't help but feel that the future we want is inevitable and maybe even closer than we think.