Hornig/Lipkin cytokine study out now - press release

[daisybell]

Here's the NHS's hatchet job on the Columbia Univ. study. Predictably the only "independent" expert they quote is Sharpe.

Funny how the supposedly completely independent company Bazian has the following as two of the testimonials on their website.....
Simon Wessely, Professor of Psychological Medicine at the Institute of Psychiatry, King’s College London, and Honorary Consultant Psychiatrist at King’s and Maudsley Hospitals
“Whilst overall the media did a pretty good job in reporting the paper […] they found it difficult to get the most important message of the paper across. Not so Behind The Headlines. Within hours appeared an elegant, detailed and clear outline of our paper, its strengths and weaknesses, and its main messages. And they were also able to immediately comment on one or two of the more inaccurate headlines as well. I wish I knew how they did it, but I hope that they continue in the same vein. I have learned also my lesson – now if I want impartial, swift, accurate and succinct analyses of recent major research, and want to know what it really means, but don’t have the time to turn to the original paper itself, I know exactly where to look.”

Fiona Fox, Director, Science Media Centre
“Both the Science Media Centre and the journalists we work with find Bazian’s analyses extremely useful; they help to put a scientific study into context, making immediately clear its strengths and limitations. The “Behind the Headlines” service is particularly useful not only to the public and health professionals, but also to those working in science communication and science media. It is a great source of information and analysis about the biggest health stories of the day – showing where and how they were covered in the media, and providing much needed background on where they came from in the first place. Many specialist health reporters follow the service, using examples of previous stories covered to help explain to their newsdesks why the context and rigour of scientific studies are important.”

 

[Antares in NYC]

Here's the NHS's hatchet job on the Columbia Univ. study. Predictably the only "independent" expert they quote is Sharpe.

The language used in that hatchet job is absolutely telling of their intentions. They minimize the findings, use quite liberally the word "few" as in "few findings", "few differences", "few statistically significant results."
They outright misrepresent the findings by claiming the study found "few differences" in cytokine levels in patients under 3 years, then claiming no statistical difference on patients suffering the disease longer than 3 years.

They are shameless: the Columbia report actually found that patients suffering the disease for longer than 3 years show LOWER levels of cytokines than controls. Whatever that means, it's notable. Well, the NHS report completely ignores it, turning it into this:

These results suggest that people with CFS/ME may have higher levels of some cytokines until around the three-year mark, at which point the differences disappear.

That is an outright misrepresentation of the study and its results.

Everything about this NHS report is biased, from the language, to the attitude, to the final conclusions. It's a report with an obvious agenda. Whoever wrote this definitely want ME/CFS to remain in the realm of the psychobabblers. No doubt.

 

[msf]

The NHS is too far down the rabbit hole (when it comes to ME).

 

[MeSci]

Funny how the supposedly completely independent company Bazian has the following as two of the testimonials on their website.....
Simon Wessely, Professor of Psychological Medicine at the Institute of Psychiatry, King’s College London, and Honorary Consultant Psychiatrist at King’s and Maudsley Hospitals
“Whilst overall the media did a pretty good job in reporting the paper […] they found it difficult to get the most important message of the paper across. Not so Behind The Headlines. Within hours appeared an elegant, detailed and clear outline of our paper, its strengths and weaknesses, and its main messages. And they were also able to immediately comment on one or two of the more inaccurate headlines as well. I wish I knew how they did it, but I hope that they continue in the same vein. I have learned also my lesson – now if I want impartial, swift, accurate and succinct analyses of recent major research, and want to know what it really means, but don’t have the time to turn to the original paper itself, I know exactly where to look.”

Fiona Fox, Director, Science Media Centre
“Both the Science Media Centre and the journalists we work with find Bazian’s analyses extremely useful; they help to put a scientific study into context, making immediately clear its strengths and limitations. The “Behind the Headlines” service is particularly useful not only to the public and health professionals, but also to those working in science communication and science media. It is a great source of information and analysis about the biggest health stories of the day – showing where and how they were covered in the media, and providing much needed background on where they came from in the first place. Many specialist health reporters follow the service, using examples of previous stories covered to help explain to their newsdesks why the context and rigour of scientific studies are important.”

Do you have a link to these? I am puzzled by this (my bolding):

Within hours appeared an elegant, detailed and clear outline of our paper

As it is apparently Wessely saying this, what paper are they talking about?

 

[MeSci]

Here's the NHS's hatchet job on the Columbia Univ. study. Predictably the only "independent" expert they quote is Sharpe.

and here is a page linked from that page. It says (my bolding):
Some of the main treatments include:

• cognitive behavioural therapy (CBT)
• a structured exercise programme called graded exercise therapy
• medication to control pain, nausea and sleeping problems

Treatments such as these can help improve CFS in most cases, although some people do not make a full recovery.

 

[daisybell]

Do you have a link to these? I am puzzled by this (my bolding):


As it is apparently Wessely saying this, what paper are they talking about?

I don't know which paper... I copied these from the testimonials page on the Bazian website. I just followed the link from the NHS choices page out of interest, to see what I could find out about who had written the piece.

 

[Sidereal]

Comments on the new Medscape article about this study:

http://forums.phoenixrising.me/inde...-re-hornig-lipkin-et-al-cytokine-study.35965/

Dr. william wilke Rheumatology

The "elevated"cytokine levels are in the range of those seen in depression, 5-10 pg/ml v 50-150 pg/ml in active rheumatoid arthritis. Doubt clinical significance.

Depression/mood not sought. Would have liked to see stratification.

Of meager clinical/etiopathogenic worth.

Dr. frank quaglieri Neurology

how EXACTLY is the "encephalitis" and "myelitis" proven ????????????????????

 

[Aurator]

Whoever wrote this definitely want ME/CFS to remain in the realm of the psychobabblers. No doubt.

Yes, it's interesting that we never do find out who writes these things. Clearly it's not to their advantage to be open about it.
Given that the writer would have to be in the pay of the NHS (literally and figuratively), and is very probably involved professionally with CFS, or at the very least well acquainted with the main issues surrounding it and up to speed with the news on it, I don't think it's an absurd suggestion to say that Sharpe actually wrote this piece himself. Stranger things happen.

 

[Esther12]

Here's the NHS's hatchet job on the Columbia Univ. study. Predictably the only "independent" expert they quote is Sharpe.

It is bad that Sharpe's insurance COI was not reported here or by the SMC, but I don't have a problem with a lot of it, other than the fact that they're so much less demanding of psych research. Why are standards lowered there?

Maybe this reflects my ignorance, but I am not going to start getting excited by findings like these at this point. It's great to have people like Lipkin involved in CFS research, and I'm hopeful that these findings will lead on to something more in the future, but I'm not too sure that these results should dramatically change how people view CFS. (Or at least they shouldn't, if it wasn't for the fact that we're starting from a position where so much unreasonable quackery has distorted how CFS is viewed).

 

[MeSci]

Comments on the new Medscape article about this study:

http://forums.phoenixrising.me/inde...-re-hornig-lipkin-et-al-cytokine-study.35965/

Does Wilke say which cytokines he is referring to? Some in this study were 100->300 pg/ml. And of course, the fact that cytokines are raised in depression could indicate a physiological cause for depression. Interferon treatment can indeed cause depression.

As for 'Dr. frank quaglieri Neurology', the use of multiple question marks does not look very professional. And the paper does not claim to have found evidence of encephalitis or myelitis.

 

[MeSci]

I don't know which paper... I copied these from the testimonials page on the Bazian website. I just followed the link from the NHS choices page out of interest, to see what I could find out about who had written the piece.

Ah - found the page at last.

Here are the people behind Bazian. I don't recognise any of the names.

 

[Snowdrop]

Funny how the supposedly completely independent company Bazian has the following as two of the testimonials on their website.....

Interesting. I had never heard of Bazian before. Will take a closer look later.
I have a little list although unlike Nanki-poo I'm taking my cue from 'The Good, The Bad and The Ugly'.
I hope over time to organise the information so that it can be made accessible and used as a resource.

 

[alex3619]

Bazian is an evidence based methodology group, if you read their page. Which means it can run into all the pitfalls and problems this approach has had unless they are very careful.

 

[alex3619]

For example:

Dr Vivek Muthu Vivek is cofounder and Chief Executive of Bazian. The depth of Vivek's clinical and scientific knowledge has been key to Bazian's ability to innovate, design and scale systems for producing large volumes of high quality evidence quickly and efficiently.

To me this rings alarm bells. You can almost substitute quickly and efficiently as cookie cutter approaches that may enhance noise and bias as much as useful data. This does not have to the be case, but its a risk in this approach.

I wonder if we should ask them to evaluate PACE? That would give us some indication as to their scientific credibility.

 

[alex3619]

They do NICE evidence reviews:

Since April 2011, Bazian's IS team has worked on over 40 Evidence Updates for NICE. The aim of NICE Evidence Updates is to help health and social care professionals keep up-to-date with new research, while reducing the time and resources spent searching for the latest evidence. Evidence Updates are upcoming on several topics, including Crohn’s disease and infection control.

 

[Snowdrop]

I wonder if we should ask them to evaluate PACE? That would give us some indication as to their scientific credibility.

That's an excellent idea although I don't think they'll bite.
Of course, I think there are all kinds of excellent ideas to pursue but I'm not volunteering for any of them.
But I think making the politics of ME in the UK more transparent is worth pursuing.

 

[Snowdrop]

@alex3619

Do you have a link to a review handy?

 

[alex3619]

I am currently of the view that evidence based approaches are very useful for bodies of science in which there is ample research, balanced research, and good funding. They do need to be updated regularly though, and such reviews are for clinical practice and management decisions, they are not science.

For fields in which is there is bias, distortion, controversy, inadequate funding and research, distorted funding bias, systematic methodological bias etc., evidence based reviews risk enshrining the bias.

Evidence based practice, which is similar, is in fact a counter to EBM if practiced properly. NO review, guideline or whatever can substitute for due diligence by a motivated medical professional. They merely offer a place to start, not the final answer.

 

[alex3619]

@alex3619

Do you have a link to a review handy?

One of theirs? I will have a look for one.

Here is a page of them: http://www.bazian.com/case_studies/index.html

Doh, these are abstracts of their reviews. I do not know if any review is public. They are a private evidence based group, and sell their service.

 

[Sidereal]

Does Wilke say which cytokines he is referring to? Some in this study were 100->300 pg/ml.

He doesn't say which cytokines ones he's referring to. I've quoted their comments in full.

And of course, the fact that cytokines are raised in depression could indicate a physiological cause for depression. Interferon treatment can indeed cause depression.

He seems blissfully unaware of this or maybe thinks people with depression are doing this to themselves by "negative thinking". Interferon alpha treatment is notorious for causing depression. Some people are starting to do trials of immune therapies. A recent trial showed that infliximab (monoclonal antibody against TNF-alpha) showed some efficacy over placebo in the subgroup of depressed patients with elevated CRP (though not in the depressed group as a whole).

As for 'Dr. frank quaglieri Neurology', the use of multiple question marks does not look very professional. And the paper does not claim to have found evidence of encephalitis or myelitis.

I've been following doctor comments on various recent ME/CFS Medscape articles and I'm shocked by their illiteracy.