Science Media Centre briefing on new Hornig, Lipkin et al. immune study

[Sean]

https://twitter.com/SharonV777/status/571478798518108161

Don't you love the end bit...

"...chronic fatigue syndrome/ME and predicting future violence."

Note the lack of a comma separating the two.

 

[alex3619]

This is something I wrote on Facebook:

The issue is careful imbalance in reporting. They distort. Some of the quotes criticizing the study are accurate, but it has been pointed out by others that they did not do this for PACE for which far more disturbing issues are still unresolved.

This study needs to be replicated, of course. It needs a study for specificity and sensitivity. Of course. This is obvious to any scientist and most doctors.

Quoting the XMRV fiasco is amusing, as it was Lipkin who organized the study that ended XMRV research.

They cite claimed authorities, a fallacy, but ignore that Lipkin is one of the most celebrated biomedical scientists in the world. Interesting "irony".

Without having read the full study it looks like this supports the activated microglia hypothesis. If so, then ME is an immune disorder that attacks the brain.

Please note this study used Fukuda and CCC, was quite large, and explains why its been so hard to find biomarkers. If this study is validated there are two stages, and the markers are different.

 

[biophile]

Funny how the sharpened knives come out when a large multicentre study showing biological abnormalities is published. When an unblinded trial with subjective outcome measures and laughable inclusion criteria is published, we're told that "for those who appreciate these things, the trial is a thing of beauty".

I think the beauty quote was from Wessely.

Here is a flashback to SMC's 2011 coverage of the PACE Trial for comparison:

http://www.sciencemediacentre.org/e...treatments-for-chronic-fatigue-syndromeme-2-2

This trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported.

It was extremely rigorous. It was large and it was randomised. The study was carefully conducted in the manner of a drug intervention study to not only establish the superiority of one treatment over the other but also to carefully report any side effects or harm from those treatments.

To be fair, beauty is in the eye of the beholder and the PACE Trial did produce some beautiful images such as this:

 

[Valentijn]

All these critical comments contrasts sharply with their uncritical coverage of the PACE Trial, etc.

http://www.sciencemediacentre.org/expert-reaction-to-biomarkers-for-cfsme/

Nice to see that they got a balanced selection of "experts" to comment on it

 

[charles shepherd]

I was very surprised and concerned to find that this list of quotes on an item of quite complex immune function research had failed to include a single comment from a UK immunologist who is carrying out immune system research involving ME/CFS, or has an expert interest in the immunology of ME/CFS - such as Professor Jonathan Edwards at UCL.

Yet it did include three quotes from psychiatrists.

There are, in fact, a number of immunologists carrying out immune function research involving ME/CFS here in the UK - examples include Dr Amolak Bansal (funded by MEA Ramsay Research Fund), Professor Stephen Todryk (funded by AfME and MEA Ramsay Research Fund) and the NIH funded study currently taking place at the ME Biobank (funded by AfME, MEA Ramsay Research Fund,MERUK and a private MEA donor).

I will therefore be writing to the SMC on Monday to express my continuing concerns about the way in which they are presenting ME/CFS research study findings to the UK media.

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[charles shepherd]

I was very surprised and concerned to find that this list of quotes on an item of quite complex immune function research had failed to include a single comment from a UK immunologist who is carrying out immune system research involving ME/CFS, or has an expert interest in the immunology of ME/CFS - such as Professor Jonathan Edwards at UCL.

Yet it did include three quotes from psychiatrists.

There are, in fact, a number of immunologists carrying out immune function research involving ME/CFS here in the UK - examples include Dr Amolak Bansal (funded by MEA Ramsay Research Fund), Professor Stephen Todryk (funded by AfME and MEA Ramsay Research Fund) and the NIH funded study currently taking place at the ME Biobank (funded by AfME, MEA Ramsay Research Fund,MERUK and a private MEA donor).

I will therefore be writing to the SMC on Monday to express my continuing concerns about the way in which they are presenting ME/CFS research study findings to the UK media.

Dr Charles Shepherd
Hon Medical Adviser, MEA

UK BBC coverage today: http://www.bbc.co.uk/news/health-31644618

 

[user9876]

I was very surprised and concerned to find that this list of quotes on an item of quite complex immune function research had failed to include a single comment from a UK immunologist who is carrying out immune system research involving ME/CFS, or has an expert interest in the immunology of ME/CFS - such as Professor Jonathan Edwards at UCL.

Yet it did include three quotes from psychiatrists.

There are, in fact, a number of immunologists carrying out immune function research involving ME/CFS here in the UK - examples include Dr Amolak Bansal (funded by MEA Ramsay Research Fund), Professor Stephen Todryk (funded by AfME and MEA Ramsay Research Fund) and the NIH funded study currently taking place at the ME Biobank (funded by AfME, MEA Ramsay Research Fund,MERUK and a private MEA donor).

I will therefore be writing to the SMC on Monday to express my continuing concerns about the way in which they are presenting ME/CFS research study findings to the UK media.

Dr Charles Shepherd
Hon Medical Adviser, MEA

I don't know why you are surprised given they are just a lobby group and have expressed clear interests and beliefs in this area. Why not also write to (or copy) paper editors who work on the assumption that they are getting independent advice from the SMC.

 

[lansbergen]

"It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop."

This shows there are distinct stages to the disease, she said. When the cytokine response starts to settle down, the disease also appears to quieten down.

I object. It does not quiten down after 3 years. It gets worse.

 

[bertiedog]

What I don't understand is why cannot reasonably intelligent people in the media see that there is a clear conflict of interest in reporting what the psychiatrists say, knowing that practically all Government funding has gone into studying the "psychology" of CFS (that is what they refer to) and virtually nothing into a biological explanation.

"Conflict of Interest" seems to be a buzz word these days banded about by the media and politicians all the time so why cannot they see that it so applies here with these psychiatrists and their incredibly biased comments on Dr Lipkin's research?

Pam

 

[user9876]

What I don't understand is why cannot reasonably intelligent people in the media see that there is a clear conflict of interest in reporting what the psychiatrists say, knowing that practically all Government funding has gone into studying the "psychology" of CFS (that is what they refer to) and virtually nothing into a biological explanation.

"Conflict of Interest" seems to be a buzz word these days banded about by the media and politicians all the time so why cannot they see that it so applies here with these psychiatrists and their incredibly biased comments on Dr Lipkin's research?

Pam

I don't think journalists put that much thought into the story. They need to get the story out quickly and have a huge area to cover and so don't do much research. Unfortunately they rely on people like the SMC to give unbiased opinions. Given their lack of time to research issues they won't realise the full extent of the conflict of interest. That is why it is important to point this out to the editors and complain because next time they may say hang on is this really an unbiased view.

 

[charles shepherd]

I don't know why you are surprised given they are just a lobby group and have expressed clear interests and beliefs in this area. Why not also write to (or copy) paper editors who work on the assumption that they are getting independent advice from the SMC.

I have actually been up to the SMC to talk to them about the coverage of ME/CFS research in the media and it's important to appreciate that they are not 'just a lobby group'. They are funded by a variety of organisations - academic, commercial etc - to present scientific research findings to the UK media. What I have been trying to do, and will continue to do, is to persuade the SMC that they need to speak to a broader collection of people when they cover ME/CFS research. I did write and offer my services some time ago but the offer was declined!

 

[Sidereal]

I think the beauty quote was from Wessely.

It was, yeah.

 

[user9876]

I have actually been up to the SMC to talk to them about the coverage of ME/CFS research in the media and it's important to appreciate that they are not 'just a lobby group'. They are funded by a variety of organisations - academic, commercial etc - to present scientific research findings to the UK media. What I have been trying to do, and will continue to do, is to persuade the SMC that they need to speak to a broader collection of people when they cover ME/CFS research. I did write and offer my services some time ago but the offer was declined!

But they act like a lobby group not just on ME but on other issues. For example, they were recently spinning a paper on CBT for psychosis. I realise they claim to be more than a lobby group but they don't function seem to function that way or be an organisation willing to change. The fact that they didn't want your services suggests they want to quote only from sources that agree with their opinions.

If they are being funded by academic, commercial groups etc then perhaps they need to understand that the money they are giving is not being properly used. Also editors and science journalists need to understand that they cannot rely on the information.

Most organisations are resistant to changing their working methods and the way to get change is often to look at how they get revenue and who consumes their services. When funders or customers demand change it is more likely to happen. Otherwise what drivers do they have for change.

 

[Daisymay]

Following the supposedly impartial Science Media Centre's briefing on the Hornig et al results (http://www.sciencemediacentre.org/expert-reaction-to-biomarkers-for-cfsme/ ) it seems timely to draw attention to Professor Malcolm Hooper's article of September 2013, "The Role of the Science Media Centre and the Insurance Industry in ME/CFS:the facts behind the fiction".

http://www.meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.htm

 

[Antares in NYC]

This was posted on Twitter by @SharonV777:
View attachment 10111
https://twitter.com/SharonV777/status/571478798518108161

That made me think of A Clockwork Orange, frankly.

 

[MeSci]

I mentioned this in the other thread, but thought I'd put it here too: Sharpe has not mentioned his insurance COI, when he normally declares it.

Declared interests

Prof. Derek Hill: IXICO has no commercial interest in ME or ME biomarkers

Prof. Peter White: Does voluntary work for UK departments of Health and Work and Pensions and Ministry of Defence. Also does paid work for a re-insurance company.

No other interests declared

I reckon there are a number of potentially-conflicting 'interests' that have gone undeclared in the piece, not least those of the SMC themselves.

I am comforted by the fact that this all seems to have been rustled up in some haste, as witness the numerous typos. I like to think that there may have been an atmosphere of panic when the proper science was cited in the media.

 

[MeSci]

UK BBC coverage today: http://www.bbc.co.uk/news/health-31644618

Better.

 

[Esther12]

I don't know why you are surprised given they are just a lobby group and have expressed clear interests and beliefs in this area. Why not also write to (or copy) paper editors who work on the assumption that they are getting independent advice from the SMC.

I have actually been up to the SMC to talk to them about the coverage of ME/CFS research in the media and it's important to appreciate that they are not 'just a lobby group'. They are funded by a variety of organisations - academic, commercial etc - to present scientific research findings to the UK media. What I have been trying to do, and will continue to do, is to persuade the SMC that they need to speak to a broader collection of people when they cover ME/CFS research. I did write and offer my services some time ago but the offer was declined!

I'm thinking Charles is being polite about them in public. I do not think we should pretend to ourselves that the SMC are an organisation that can be gently persuaded to deal with CFS fairly.

 

[jimells]

In the "olden days" the SMC would've been known as a public relations firm representing clients, and their rantings would've been seen in that light. They are very clever to organize as a "non-profit" and pick such an official-sounding name. Probably most folks think they are some kind of government office.

 

[Valentijn]

They are very clever to organize as a "non-profit" and pick such an official-sounding name. Probably most folks think they are some kind of government office.

I think people have seen it happen enough now in the US that they wouldn't give SMC the benefit of the doubt which it's getting in the UK. Hence it's unlikely they'll be expanding into the US, since their usual tactics aren't particularly effective there anymore.