New Fluge & Mella rituximab study: post MEDIA LINKS here

[alex3619]

I agree @Sasha, but people are astounded by the comment by Simon Wessely. I was trying to give a little context, as we will get more such comments over time.

 

[Sasha]

No problem, @alex3619 - we just need to be mindful not to go too far down that particular rabbithole (or not to rabbit too far into that particular minefield!).

 

[Blue]

@deleder2k may I ask if there has been any coverage by Norwegian media yet?

 

[Sasha]

@deleder2k may I ask if there has been any coverage by Norwegian media yet?

There's one listed in my orginal post, @Blue - that's the post I'm updating with the new stories.

 

[Yogi]

I agree @Sasha, but people are astounded by the comment by Simon Wessely. I was trying to give a little context, as we will get more such comments over time.

Completely agree Alex. Let's have a separate thread on SW's comment as it is important that he is not allowed to airbrush history and his stigmatisation and abuse of patients and research into physical causes.

 

[waiting]

Is anyone surprised that the mainstream media have not picked this up yet?

How long has it taken with other stories to hit?

I'm thinking the XMRV studies hit the mainstream media very quickly, didn't they?

 

[Scarecrow]

Is anyone surprised that the mainstream media have not picked this up yet?

Yes and no. It's such a small study and open label and no control group.

It's significant for what it promises to deliver in future. If the Phase III demonstrates similar outcomes, it will be HUGE news.

 

[Sasha]

Is anyone surprised that the mainstream media have not picked this up yet?

How long has it taken with other stories to hit?

I'm thinking the XMRV studies hit the mainstream media very quickly, didn't they?

I think that to realise the importance of this new paper, you'd have to realise the importance of the original placebo-controlled RCT and how important it is that these results are consistent with that. You'd also have to understand how rare it is for PWME to have such spectacular improvement from such a low baseline in such a short period (you need that knowledge to realise why the lack of a control group is less of an issue than it otherwise might be).

I don't know what kind of press release got put out and how much backstory and interpretation was in there - possibly something rather more cautious (understandable that F&M would want to do that) than @Simon's interpretation, which includes a PWME's perspective and understanding of the intractability of the disease.

I think Simon's focus is spot on: that any treatment can put very sick patients in full remission is AMAZING and huge news - but you need some background to really understand that and the media don't have that kind of background.

As @Scarecrow says, if the big, 152-patient trial replicates these kind of findings it will be MASSIVE and our world will never be the same (in a good way!).

But we should still push this. For once, it would be nice if the media's slapdash reporting about us played in our favour and the Daily Mail or someone reported this serious clinical study with the same enthusiasm that they would an account of a person with ME, oh, I don't know... jumping into the cold sea and coming out cured, for example.

 

[Kati]

i don't know if it counts as a media link, but I tweeted the following to the Royal College of Physicians in Canada and the CIHR (Canadian Institutes for Health Research) and the latter added my post to their weekly news on Storify. It might be crumbs, but in a wolrld where we don't usually get responses from government bodies, I'll take it.

My tweet: Is #mecfs an auto-immune variant? The latest Rituximab trial is suggesting that @Royal_College @CIHR_IRSC #cdnhealth http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898 …

And the Storify weekly report from CIHR
https://storify.com/CIHR_IRSC/cihr-...ign=website&utm_source=email&utm_medium=email

i encourage everyone here to get their twitter account and start tweeting about ME. Join health care tweet chats.
http://www.symplur.com/healthcare-hashtags/tweet-chats/ And work on your circle of influence by making friends outside of our ME community. Participating in tweetchats is a great way to make new contacts.

 

[Sasha]

Well done, @Kati!

Great idea about tweetchats. We've got to stop talking among ourselves and grow our community.

 

[Kati]

Well done, @Kati!

Great idea about tweetchats. We've got to stop talking among ourselves and grow our community.

+1,000,000

 

[Never Give Up]

+1,000,000

What does that mean?

 

[Kati]

What does that mean?

It means i agree 1 million times

 

[alex3619]

As @Scarecrow says, if the big, 152-patient trial replicates these kind of findings it will be MASSIVE and our world will never be the same (in a good way!).

What will really drive this home is huge numbers of cured patients. Someone will then run an economic analysis. At that point the naysayers will be seen as dinosaurs by most who bother investigating even a little.

 

[alex3619]

@Yogi has started a thread on the Simon Wessely comment in the New Scientist here: http://forums.phoenixrising.me/index.php?threads/simon-wessely-in-new-scientist.38512/

 

[Sasha]

New Scientist is reporting today that their two items on Rituximab this week – Andy Coghlan's news story and then their leader – have been the most read things in the mag this week. I guess this goes for just the online edition.

https://www.facebook.com/permalink....otal_comments=33&comment_tracking={"tn":"R0"}

 

[Sasha]

Fluge & Mella interviewed in the Norwegian medical journal, Dagens Medisin (Today's Medicine):

http://www.dagensmedisin.no/artikle...oldsbehandling-forlenger-effekt-av-rituximab/

And it's commentable!

I'm hoping they won't mind contributions in English.

@deleder2k - don't know if you want to comment?

I'm going to have a go and will be mentioning this Norwegian biomedical research charity who have supported (and presumably are still supporting) the Haukeland work:

http://me-forskning.no/

Here's their page in English explaining what they do:

http://me-forskning.no/english/about-this-fundraising/

 

[Sasha]

Well, that was pleasing! My comment went straight through and is up on the site, complete with web addresses for the Norwegian charity and IiME's UK rituximab trial fund.

I'm not sure how long it will stay there, though, if it's deemed inappropriate:

Our comment rules

Today's Medicine is intended especially for doctors, pharmacists , nurses and decision makers in the health sector . Comment function is therefore intended primarily on feedback from these groups.

Today Medicine reserves the right to remove any post that we find inappropriate .

 

[deleder2k]

@Sasha, I have already commented I don't think anyone will remove it. On some articles there have been hundreds of comments by ME sufferers, doctors, nurses and others. It is OK.

 

[Sasha]

@Sasha, I have already commented I don't think anyone will remove it. On some articles there have been hundreds of comments by ME sufferers, doctors, nurses and others. It is OK.

Well, top comment, what with the beetles and all! Here's what Google Translate showed me:

I bend down to the ground for these gentlemen. I hope they have the funds and resources they might need in the future. After amazing results, the current Phase 3 study delayed by one year due to previous government, as well as the Research Council's decision to put research on beetles higher than a fantastic opportunity to help thousands of extremely sick people. People who currently have no access to treatment.​