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

MeSci

ME/CFS since 1995; activity level 6?
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8,231
Location
Cornwall, UK
My basic issue with Fiona Fox/SMC is not necessarily to do with them having a specific science/non-science agenda. Their agenda is to promote the interests of the powerful individuals and organisations that fund them. They may not know or care about any of the science, just as the CEOs and shareholders of pharmaceutical/chemical/oil/agribusiness multinationals don't. All they care about is power and money. They have no interest in the truth. They are a PR organisation that is very selective about who their clients are, and not in an ethical way. It's cronyism.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
.

For example, a document from 1997, under the headline "Contribution to OTAM" (which stands for On Tactics and Methods - a discussion process within the RCP on its future), contains some interesting views. "Fiona Foster" writes about a friend, Carol, who was suffering from ME and is on anti-depressants.


She wrote: "There are plenty more like Carol ... I often think 'there but for the grace of the RCP go I'. This secret thought is even present when I meet up with those mates who have dropped out of RCP politics. Slowly but surely they have lost their framework for understanding the world... I do feel that being one of the few people in the world who can really understand imposes a certain burden and a definite isolation. But I also feel it is a great privilidge [sic] and quite frankly, if it is [sic] choice between carrying the burden of RCP politics or ending up like my old friend Carol there's no choice involved!"

I hope Carol wasn't her real name. Naming and disparaging a former friend publicly would be truly despicable.
 

Sean

Senior Member
Messages
7,378
I hope Carol wasn't her real name. Naming and disparaging a former friend publicly would be truly despicable.
Sad to say I had somebody who (I thought) was a friend do something similar a few years back. Didn't use my name, but said some shitty things in the national media about people in my situation, quoting the usual psychobabble moralising, and was quite clearly basing it in substantial part on me. Wasn't a doctor, probably more comparable to the kind of job that somebody like Prof Shorter does, but justified it all by saying they had talked to a (yes, just one,) professor of psych.

Was a nasty learning experience. :(
 

Hip

Senior Member
Messages
17,824
Have you looked through the articles on Spiked!? I'm not really sure what it is that you are looking for.

I am mainly looking for information that would throw light on the reasons why the Science Media Centre have this bias towards CBT/GET.

Actually, when I went through all the SMC publications, activities and talks on ME/CFS, the bias towards CBT/GET is not that strong. The SMC has stuff about ME/CFS biomedical research too. But the preponderance of items on the SMC are about CBT/GET, as the following demonstrates:

Here is all the SMC stuff about ME/CFS biomedical research (ie, research considering ME/CFS as a disease with physical causes), a total of 5 items:
expert reaction to MRC funding round for research into the underlying biology of CFS/ME
Chronic Fatigue Syndrome – unravelling the controversy
expert reaction to Chronic Fatigue Syndrome (CFS) and brain imaging as published in PLOS One
expert encounter: Prof Ian Lipkin, Columbia University
expert reaction to biomarkers for CFS/ME

And here is all the SMC stuff about ME/CFS CBT/GET research (ie, research considering ME/CFS as a disease with psychogenic causes), a total of 6 items:
CFS/ME trial
expert reaction to Lancet study looking at treatments for Chronic Fatigue Syndrome/ME
expert reaction to internet-based cognitive behavioural treatments for adolescents with CFS
do the best treatments for CFS cost more?
expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
CFS/ME: The next step in the controversy

(I am not including here SMC items commenting on the failed XMRV replication studies).

Certainly since the Wessely School researchers who believe ME/CFS is psychogenic disease and promote CBT/GET as a treatment are a small monitory in the sum total of ME/CFS researchers; and since I believe most other researchers view ME/CFS as a disease with physical causes, you would not expect CBT/GET to feature so prominently on the SMC website, and you would expect there to be more biomedical research.

Where for example is the SMC account of Prof Montoya's 2012 research using the antiviral Valcyte to treat ME/CFS? Why is that not on the SMC site?



Such views often become entrenched, especially if someone acts upon them. In this case, she basically ridiculed her friend publicly.

I don't really see that myself. I think Fox's statement about her friend who developed ME/CFS is just a "there but for the grace of God go I" statement, and a folk psychology idea of how focusing on one's work may ward off conditions like ME/CFS.

I have heard many similar things from friends and family: people saying things to me like "do you think the reason you developed your condition is because you lost focus on career and work?" and so forth.

These again are just erroneous amateur folk psychology attempts of people to create a theory to explain what they see when someone they know develops ME/CFS. Folk psychology is often very wide of the mark, but human beings seem to have a need to create some sort of explanation, no matter how amateurish.

The entire Wessely School view on ME/CFS is really just amateurish folk psychology dressed up to make it look like science.


Certainly we must strive to make the fact that ME/CFS is a physical disease more widely known, so that the general public understand that ME/CFS is not a condition you have any mental control of, and cannot avoided by focusing on career.

However, I would not necessarily judge someone badly just because they made an incorrect throwaway folk psychology comment about a friend who developed ME/CFS. If we did, we would have to judge much of the world badly.

But now that Fox works with science rather the political activism she was involved with 20 years ago, you would expect her to have a far greater understanding of ME/CFS that just amateurish folk psychology ideas.

It would be interesting to hear her current views on ME/CFS.

For ease of reference, Fox's statement is here:
She wrote: "There are plenty more like Carol ... I often think 'there but for the grace of the RCP go I'. This secret thought is even present when I meet up with those mates who have dropped out of RCP politics. Slowly but surely they have lost their framework for understanding the world... I do feel that being one of the few people in the world who can really understand imposes a certain burden and a definite isolation. But I also feel it is a great privilidge [sic] and quite frankly, if it is [sic] choice between carrying the burden of RCP politics or ending up like my old friend Carol there's no choice involved!"

Source: here.



Fiona Fox has a personal bias regarding with ME/SEID. It's not a matter of a corporate interest having bought the SMC's assistance, but could certainly tie in with SMC being more willing to seek ties with psych-leaning groups on the subject, and to portray it in a purely psychological framework.

I suppose it is possible that a personal leaning to psychogenic explanations of ME/CFS (if Fox indeed has this leaning) might predispose the SMC to Wessely School ideas.

However, if I had to guess why the SMC is biased towards the Wessely School "all in the mind" psychogenic view on ME/CFS and the CBT/GET treatments of ME/CFS, I would say it may be more down to the fact that CBT/GET is dressed up with garb of scientific respectability (very well funded large-scale studies, etc), even though Wessely School views are in essence glorified folk psychology.

It may also be because apparently Simon Wessely was at one stage on the science advisory panel of the SMC (he is listed as such in this 2002 SMC document). Either his legacy and/or an on-the-quiet continued informal relationship with the SMC might be influencing things there. He's not on the current advisory panel.
 

Sean

Senior Member
Messages
7,378
It may also be because apparently Simon Wessely was at one stage on the science advisory panel of the SMC (he is listed as such in this 2002 SMC document). Either his legacy and/or an on-the-quiet continued informal relationship with the SMC might be influencing things there. He's not on the current advisory panel.
IIRC, he was their adviser on these matters for a decade, up to 2012. Even if he is no longer in any way an ongoing active influence on them, his legacy is clearly powerful.
 

Hip

Senior Member
Messages
17,824
They may not know or care about any of the science, just as the CEOs and shareholders of pharmaceutical/chemical/oil/agribusiness multinationals don't. All they care about is power and money. They have no interest in the truth. They are a PR organisation that is very selective about who their clients are, and not in an ethical way.

If you look at the staff and governance of the SMC, they all have very strong scientific credentials, so I don't buy at all the idea that the SMC may not care about the science, have no interest in the truth, and are only in it for the money.

Power maybe...

Admittedly on a bad day, when I have more depression and misery than normal, I may sometimes think such cynical thoughts about the whole world and everyone in it too! Fortunately those bad days are not that frequent.
 
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Messages
13,774
I am mainly looking for information that would throw light on the reasons why the Science Media Centre have this bias towards CBT/GET.

That is necessarily going to be guesswork.

Actually, when I went through all the SMC publications, activities and talks on ME/CFS, the bias towards CBT/GET is not that strong. The SMC has stuff about ME/CFS biomedical research too. But the preponderance of items on the SMC are about CBT/GET, as the following demonstrates:

Here is all the SMC stuff about ME/CFS biomedical research (ie, research considering ME/CFS as a disease with physical causes), a total of 5 items:
expert reaction to MRC funding round for research into the underlying biology of CFS/ME
Chronic Fatigue Syndrome – unravelling the controversy
expert reaction to Chronic Fatigue Syndrome (CFS) and brain imaging as published in PLOS One
expert encounter: Prof Ian Lipkin, Columbia University
expert reaction to biomarkers for CFS/ME

And here is all the SMC stuff about ME/CFS CBT/GET research (ie, research considering ME/CFS as a disease with psychogenic causes), a total of 6 items:
CFS/ME trial
expert reaction to Lancet study looking at treatments for Chronic Fatigue Syndrome/ME
expert reaction to internet-based cognitive behavioural treatments for adolescents with CFS
do the best treatments for CFS cost more?
expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME
CFS/ME: The next step in the controversy

(I am not including here SMC items commenting on the failed XMRV replication studies).

Certainly since the Wessely School researchers who believe ME/CFS is psychogenic disease and promote CBT/GET as a treatment are a small monitory in the sum total of ME/CFS researchers; and since I believe most other researchers view ME/CFS as a disease with physical causes, you would not expect CBT/GET to feature so prominently on the SMC website, and you would expect there to be more biomedical research.

What matters more than the number of topics covered is how they are covered, and on PACE and patient's criticism of it, the SMC have been promoting an utterly misleading narrative. There's also their work on the militant CFS patients stuff, which is really important.

Also, I think that the Lipkin thing was prompted by patient groups, and then through the SMC got absolutely no coverage anywhere. I've got no idea why it was decided that the SMC should be used for that.

I suppose it is possible that a personal leaning to psychogenic explanations of ME/CFS (if Fox indeed has this leaning) might predispose the SMC to Wessely School ideas.

It looks like you're quoting something I didn't say there.
 

Hip

Senior Member
Messages
17,824
What matters more than the number of topics covered is how they are covered, and on PACE and patient's criticism of it, the SMC have been promoting an utterly misleading narrative.

Yes, I agree.

The SMC psychiatric experts uncritically support CBT/GET, and never criticize the PACE Trial study, which uses a deceptive definition of the word "recovery" to make to seem that CBT/GET leads to ME/CFS recovery, when in fact it does not.

But these psychiatrists do occasionally have a good word for the biomedical research. For example in this SMC item about a study showing decreased activation in the basal ganglia of ME/CFS patients, Prof Peter White made a positive comment.
 
Messages
1,446
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An example of the scientists 'selected' by the SMC for their willingness to engage with the media in promoting CBT and GET.

The Science Media Centre PACE CBT/GET Trial Press Release (2011) included the following ‘Experts’ :



· Dr Alastair Miller from Liverpool: “This trial represents the highest grade of clinical evidence – a large randomised clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME”.

It should be noted that Dr Miller was one of the three “independent” assessors of trial safety data for the PACE Trial.



· Dr Brian John Angus: “The study should reassure patients that there is an evidence based treatment that can help them to get better…. It was extremely rigorous… (and) was carefully conducted….As a trial this involved a huge amount of checking and cross checking….This should mean that GET and CBT should be widely available throughout the country….The trial was conducted to a high ethical standard… .It was rigorously performed”.

Dr Angus was Centre Lead for the PACE Trial in Oxford.



· Professor Derick Wade from Oxford: “The trial design of this study was very good, and means the conclusions drawn can be drawn with confidence. This is a very significant finding. It identifies that one commonly used intervention (by which he meant pacing) is not effective (and therefore should not be used), and it confirms the effectiveness of two treatments, and their safety. The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments”.

The implication of this is that if people refuse to take part in these “rehabilitation” programmes, they do not wish to get better, so they can expect their State benefits to be withdrawn. Professor Wade has notably written to the DWP advising that, despite the WHO classification, ME/CFS is not a neurological disorder but a “non-medical illness” (letter dated 22nd August 2005 to Dr Roger Thomas, Senior Medical Policy Advisor in the Benefit Strategy Directorate at the DWP). He has also written to an ME/CFS patient: “it is wrong to fit ME/CFS into a biomedical model of illness” (letter dated 7th July 2006).





· Dr (now Professor) Willie Hamilton: “This study matters. It matters a lot….It sends a powerful message to PCTs – and the soon-to-be-formed GP consortia – that they must fund CBT or GET. NICE proposed this before the study came out – the evidence is stronger now”.


Dr Hamilton is Chief Medical Officer for three permanent health insurance companies -- Exeter Friendly Society, Liverpool Victoria and Friends Provident – and he categorises ME/CFS as a functional disorder. (People diagnosed as having this disorder will thus be excluded from payments under a permanent health insurance policy with these companies, since psychiatric disorders are not covered). He was a member of the NICE CG53 Guideline Development Group which recommended CBT/GET as the only intervention for people with ME/CFS.

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


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

.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
If you look at the staff and governance of the SMC, they all have very strong scientific credentials, so I don't buy at all the idea that the SMC may not care about the science, have no interest in the truth, and are only in it for the money.

Power maybe...

Admittedly on a bad day, when I have more depression and misery than normal, I may sometimes think such cynical thoughts about the whole world and everyone in it too! Fortunately those bad days are not that frequent.

I haven't yet looked at the advisor list, but there are many scientists who appear on the surface to be well-qualified, yet clearly (when you see what they actually say) are profoundly ignorant about a number of scientific issues, often even in their own specialisms. Science/research is also overwhelmingly funded by industry, so you will get strong biases there. The list of funding bodies includes Kings College London, the epicentre of the CBT/GET psych agenda.

He who pays the piper...
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
If you look at the staff and governance of the SMC, they all have very strong scientific credentials, so I don't buy at all the idea that the SMC may not care about the science, have no interest in the truth, and are only in it for the money.

Power maybe...

Admittedly on a bad day, when I have more depression and misery than normal, I may sometimes think such cynical thoughts about the whole world and everyone in it too! Fortunately those bad days are not that frequent.

A quick look at the staff list doesn't indicate to me that they have 'very strong scientific credentials', at least not in relevant subjects. They have some science qualifications. Four have links to the 'Society of Biology', whose website suggests that it bears significant similarities to the SMC, especially "The Society of Biology is a single unified voice for biology: advising Government and influencing policy"

Your 'governance' link brought up a page featuring a single article.

I'm not the slightest bit depressed (maybe partly due to the low interferon levels found by Hornig et al in long-term sufferers recently), but terrier-like in my quest for unbiased truth.
 

Hip

Senior Member
Messages
17,824
A quick look at the staff list doesn't indicate to me that they have 'very strong scientific credentials', at least not in relevant subjects.

Well except for Fox, every single member of staff has one or two science degrees, and a few PhDs here and there. And on the advisory committee, there are four science Professors, and the others on the advisory committee are involved in science in some way or other.

Looking at the faces of the SMC staff, they come across as a young, good hearted, idealistic bunch, that have a love of science.

Indeed, this could be half the problem, because one of the best ways to camouflage your dirty deeds is to get genuinely good hearted (but politically naive) young staff to inadvertently do the dirty work for you.

So certainly, in spite of the genuine good intent of the SMC staff, the SMC may easily be manipulated by those with ulterior motives.


For example, @Wildcat's post above quotes Prof Willie Hamilton's statements in this SMC briefing where he gives very positive views on the PACE trial and CBT/GET as a treatment for ME/CFS.

Yet also in @Wildcat's post, we learn from Professor Malcolm Hooper that:
Dr Hamilton is Chief Medical Officer for three permanent health insurance companies -- Exeter Friendly Society, Liverpool Victoria and Friends Provident – and he categorises ME/CFS as a functional disorder.

(People diagnosed as having this disorder will thus be excluded from payments under a permanent health insurance policy with these companies, since psychiatric disorders are not covered).

Source: ME Action UK website

Note that permanent health insurance is now called income protection insurance; this is a policy which pays benefits to those who are unable to work due to illness or accident.

It would very much suit these insurance companies if they could avoid lifelong payout to ME/CFS patients; so there is a huge conflict of interest in having someone like Prof Willie Hamilton commenting on the efficacy of these supposed CBT/GET rehabilitation treatments.

But unless the SMC staff investigate the backgrounds of these experts commenting in the SMC press briefings, these staff may not realize that they are unwittingly facilitating the manipulation of the media.



It would be good to go through all the articles and briefings on ME/CFS found on the SMC website, and count up how many of the experts that comment within these articles support the much maligned "all in the mind" psychogenic view on ME/CFS, or support a view that dismisses ME/CFS as a disease with physical causes. And then compare to the number of experts who consider ME/CFS to be a real disease with physical causes.

Is there a list anywhere of all the important researchers and experts who hold these psychogenic or dismissive views on ME/CFS?

I know that Simon Wessely, Michael Sharpe, Peter White, Anthony Cleare and Anthony David subscribe to the "Wessely School" psychogenic view of ME/CFS. But it would be good to have a more comprehensive list of people who view ME/CFS as "all in the mind," and people who dismiss ME/CFS as not a real physical disease.

Clearly Prof Derick Wade can be added to our list, if he views ME/CFS as a non-medical illness, and says it is wrong to fit ME/CFS into a biomedical model of illness (see Wildcat's post above).

And Prof Willie Hamilton can be added to the list, since he has these strong connections to the income protection insurance industry.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Well except for Fox, every single member of staff has one or two science degrees, and a few PhDs here and there. And on the advisory committee, there are four science Professors, and the others on the advisory committee are involved in science in some way or other.

Looking at the faces of the SMC staff, they come across as a young, good hearted, idealistic bunch, that have a love of science.

I don't think you can get all that from looking at people's photos.

Alice Kay has a degree in psychology - not science. But yes, the rest, apart from Fox - have science degrees. When I said 'not relevant' I meant not relevant to ME, apart from Natasha Neill (biochemistry) and
Michael Walsh (biochemistry, but apparently just a BSc (Hons?)) and maybe Heather Morris (biology, but that is a very broad subject, and again presumably just a BSc (Hons?)). I don't see anything outstanding there.
Is there a list anywhere of all the important researchers and experts who hold these psychogenic or dismissive views on ME/CFS?

I know that Simon Wessely, Michael Sharpe, Peter White, Anthony Cleare and Anthony David subscribe to the "Wessely School" psychogenic view of ME/CFS. But it would be good to have a more comprehensive list of people who view ME/CFS as "all in the mind," and people who dismiss ME/CFS as not a real physical disease.

Clearly Prof Derick Wade can be added to our list, if he views ME/CFS as a non-medical illness, and says it is wrong to fit ME/CFS into a biomedical model of illness (see Wildcat's post above).

And Prof Willie Hamilton can be added to the list, since he has these strong connections to the income protection insurance industry.

I don't know much about their research, but there are Esther Crawley, Trudie Chalder and Jon Stone. Per Fink in Denmark?
 
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Hip

Senior Member
Messages
17,824
I don't see anything outstanding there.

Remember that the SMC is journalist's media centre, not a science research institute. You don't expect them to have Nobel prize winners there.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Remember that the SMC is journalist's media centre, not a science research institute. You don't expect them to have Nobel prize winners there.

No, but I would expect them to have the education and skills to analyse scientific papers critically. That is a skill that IMO usually requires a higher degree in subjects relevant to the papers in question. If they don't have such skills, how can they differentiate good science from bad science or non-science? And if they can't do that, what is the point of them?
 

Hip

Senior Member
Messages
17,824
I don't know much about their research, but there are Esther Crawley, Trudie Chalder and Jon Stone. Per Fink in Denmark?

Could anyone fill us in on the views these people that MeSci mentioned have on ME/CFS? I am not familiar with Jon Stone or Per Fink.
 

JayS

Senior Member
Messages
195
As a clinician confronted with patients with chronic fatigue syndrome (CFS), van der Meer was intrigued by their suffering. Since 1989 together with Gijs Bleijenberg and Jochem MD Galama, he performed research trying to understand CFS. Major findings are:

  • There is no evidence for a role of persistent infection (such as enteroviral infection, Epstein Barr virus infection, and as most recently established XMRV infection) In a television interview since Lo et al. he has admitted that the positive study was earthshaking.
  • There are important perpetuating psychological factors, which can be addressed with cognitive behaviour therapy(CBT)
  • Successful CBT means recovery
  • CFS seems to be a central disorder of bodily perception
  • Fluoxetine, nutritional supplements, Acclydine and Ondansetron are not effective in CFS (based on our RCTs)
  • There is a loss of grey matter in the brain of CFS patients and this is at least partially reversible with successful CBT.[9]

http://en.wikipedia.org/wiki/Jos_van_der_Meer
 

Hip

Senior Member
Messages
17,824
No, but I would expect them to have the education and skills to analyse scientific papers critically. That is a skill that IMO usually requires a higher degree in subjects relevant to the papers in question. If they don't have such skills, how can they differentiate good science from bad science or non-science? And if they can't do that, what is the point of them?

I think that might be asking a bit too much from journalists and media workers. Even leading experts in a field can have a hard time judging whether a given newly published paper is good science or bad science. It's often time that tells.

Also, if you started filling the SMC with scientific experts in their fields, then that could actually introduce a great deal more scientific bias into the SMC. This is because most experts have their own strong opinions about their subject. We see this in ME/CFS research, where for example Dr Chia believes ME/CFS is mainly caused by enteroviruses, whereas Prof Montoya focuses on the Herpesviridae infections in ME/CFS, and so forth. No single ME/CFS expert would ever have an unbiased view of ME/CFS.

Journalists do a far better job at being unbiased, in my experience; journalists tend to have a very broad range of interests and knowledge, and are often less partisan in their views.

I know because I used go out with a Latin American journalist for 10 years, so got to know dozens of journalists. Journalists seem to be characterized by this intense curiosity and eclectic interests, and love exploring the world. I got on very well with them, as I used to have lot of curiosity and eclectic preoccupations myself (before viral infection and ME/CFS turned my brain to mush).



What they could do at the Science Media Centre to reduce bias is perhaps survey the viewpoints of all the experts they employ. For each important scientific field, especially the controversial subjects (like vaccines, GM food, nuclear energy, etc), the SMC could enumerate beforehand the major scientific viewpoints held in each field, and then ensure that the number of expert comments they provide from each viewpoint is roughly proportionate to the number of researchers in the field that hold that particular viewpoint.

So if 20% of researchers in a scientific field subscribe to viewpoint A, and the other 80% subscribe to viewpoint B, then the number of expert comments provided by the SMC should reflect this, and be in the same ratio.

That would ensure the SMC are accurately reflecting the views, and the relative weight of each view, of the scientific community they are charged with representing in the media.

If they did this, then the psychogenic views of ME/CFS may not get much of a look-in on the SMC website, because I think this psychogenic perspective of ME/CFS is a minority one, if you take into account the ME/CFS research community worldwide.
 
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