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New Fluge & Mella rituximab study: post MEDIA LINKS here

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charles shepherd

Senior Member
Messages
2,239
Scarecrow said:
<Involuntary sharp intake of breath>



The gall of the man.
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I was asked to provide some MEA comments for the New Scientist article on Tuesday

This is the copy I sent to Andy Coghlan at the New Scientist:

MEA COMMENT

The Norwegian clinical trials (which are being closely followed by people with ME/CFS) indicate that Rituximab could be the first major advance in the drug treatment of ME/CFS.

The findings also support a key role for immune system dysfunction in the causation of ME/CFS and explain why (immunomodulatory) treatments that remove B cells from circulation could then be used in some cases.

The downside is that Rituximab is a very expensive drug with a potential to cause serious side-effects.

So while a much larger phase 3 clinical trial is now taking place in Norway, we also need to set up other multi-centre clinical trials to confirm the efficacy and safety of Rituximab in ME/CFS, and to obtain a clearer (clinical and immunological) profile of which patients respond to Rituximab and which do not.

Otherwise, there will be a significant delay before what could be a very effective form of treatment becomes available here in the UK.

Dr Charles Shepherd
Hon Medical Adviser, ME Association

Additional notes:
1 Researchers at University College London are currently carrying out further research on B cell dysfunction in ME/CFS in preparation for a UK clinical trial of Rituximab
2 Dr Oystein Fluge will be speaking at the CFS/ME Research Collaborative Conference in Newcastle on Wednesday October 14th 2015:
http://www.meassociation.org.uk/201...tive-conference-newcastle-13-14-october-2015/
3 The Norwegian group are also looking at the use of another immunomodulatory drug, cyclophosphamide:
http://www.meassociation.org.uk/201...rway-for-treatment-of-mecfs-10-february-2015/
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Aurator

Senior Member
Messages
625
charles shepherd said:
I was asked to provide some MEA comments for the New Scientist article on Tuesday

This is the copy I sent to Andy Coghlan at the New Scientist:
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A small point perhaps, but one of arguably some significance: while Andy Coghlan is at it, would he be good enough, I wonder, to move the article from where it is at present - linked with Mental Health topics - to somewhere more consistent with the content of the research being discussed?
 
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SOC

SOC

Senior Member
Messages
7,849
Nielk said:
Why is he always the one that they interview
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Because the UK via the Science Media Centre thinks he's THE expert on CFS/ME. Nobody in the rest of the world agrees, but the UK has it's own way of looking at the world.

Notice at the top of the New Scientist article under the author:
For similar stories, visit the Mental Health Topic Guide
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Thanks, New Scientist, for relegating us to the Mental Health section even in an article about the effectiveness of B-cell depletion therapy. :rolleyes:
 
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Dolphin

Senior Member
Messages
17,567
charles shepherd said:
The downside is that Rituximab is a very expensive drug with a potential to cause serious side-effects.
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I think I'd prefer if it was just called an expensive drug. I know it's very expensive in the US but don't think it's as expensive in the UK: I read somewhere a few years ago it cost the NHS in the region of £900 per dose. I know there are infusion costs too and one will generally need to be observed for reactions for the first dose or two. But it's a drug that is paid for other conditions like Rheumatoid Arthritis. There are other drugs for other conditions now that are a lot more expensive again.
 
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Sean

Senior Member
Messages
7,378
SOC said:
Thanks, New Scientist, for relegating us to the Mental Health section even in an article about the effectiveness of B-cell depletion therapy. :rolleyes:
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If it is a 'psychiatric' symptom, then it is a mental disorder. If it is a hard physiological lab result then it is a mental disorder.

QED. Into the Mental Health section it goes.
 
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charles shepherd

Senior Member
Messages
2,239
Aurator said:
A small point perhaps, but one of arguably some significance: while Andy Coghlan is at it, would he be good enough, I wonder, to move the article from where it is at present - linked with Mental Health topics - to somewhere more consistent with the content of the research being discussed?
Click to expand...

Rituximab trial: Coverage in the New Scientist

I have just sent this to Andy Coghlan at the New Scientist:

Morning Andy

You will not be surprised to learn that there is quite a lot of comment appearing on the social media following your item on Rituximab. Eg:

http://forums.phoenixrising.me/inde...y-with-rituximab-maintenance-treatment.38477/

In relation to the pre-heading for the New Scientist item:

Antibody wipeout found to relieve chronic fatigue syndrome

Please could you arrange for the link to the Mental Health Topic Guide to be removed asop and changed to a different part of the health section on the NS website

As you probably know, ME/CFS is classified as a neurological disorder by WHO in ICD10.

This WHO classification is fully accepted by the UK Dept of Health.

And the recent IoM and NIH reports from America both made it clear that ME/CFS is a complex multisystem disorder that should no longer be regarded as a mental health/psychological condition.

As you didn't manage to fit in my comments I have put them up on the MEA website anyway!

Regards

Charles
 
A.B.

A.B.

Senior Member
Messages
3,780
Sasha said:
The story is now in a German science online mag called Spektrum:

http://www.spektrum.de/news/medikament-bringt-erschoepfungssyndrom-zum-verschwinden/1353694

And they take comments!

Anybody familiar with it?

Anybody sprecht Deutsch?
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To summarize the article in a few words: striking results, long term improvement, results suggest autoimmune disease, a larger study is planned, exact cause still unknown, patients are often accused of faking it, further studies could deliver not only effective treatment but also explain the cause.

One hypothesis is also described which says that the body continues to produce antibodies long after an initial infection is gone. These antibodies would for example disrupt oxygenation of muscles.
 
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DanME

DanME

Senior Member
Messages
289
Sasha said:
The story is now in a German science online mag called Spektrum:

http://www.spektrum.de/news/medikament-bringt-erschoepfungssyndrom-zum-verschwinden/1353694

And they take comments!

Anybody familiar with it?

Anybody sprecht Deutsch?
Click to expand...

Hi! It's a short, but good article. They describe the study correctly and conclude, that CFS may be an autoimmune disease, triggered after an infection, which may effect blood perfusion. Also this sentence:

"Dieser unklare Status bedeutet eine zusätzliche Belastung für Patienten, die sich oft dem Vorwurf ausgesetzt sehen, ihre Krankheit nur zu simulieren."

"This unclear status means an additional burden for patients who often face the accusation that they only simulate their illness."

They seem to be on our site! :)

Spektrum der Wissenschaft (Spectrum of Science) is a rather serious popular science magazine. A lot of scientists and educated people read it. E.g. My mother, who is an analytical chemist. ;)

I will leave a comment today!
 
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charles shepherd

Senior Member
Messages
2,239
Sasha said:
Well done, @charles shepherd. It's important that this ridiculous knee-jerk miscategorisation gets stamped on.
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New Scientist website classification of ME/CFS is now being removed following our request this morning:

Hi Charles….we’re delinking it from the mental health site as we speak!! Sorry, it was an oversight that didn’t occur to us, but you’re absolutely right.

And sorry I didn’t manage to get your comments in….the story was already through by the time we received them, unfortunately.

I’m really grateful for the comments, however, and do keep in touch on this topic!! I think it could be an exciting and hopeful time for at least some of the patients with the condition

Andy
 
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