The ME Association wrote to the Science Media Centre on 3 March 2015 – following publication of their round-up of ‘expert reaction' about the Hornig/Lipkin paper in ‘Science Advances'.
Our letter appears first.
03/03/2015
Dear Mr Sykes,
The ME Association is a charity that represents many thousands of patients who are ill with ME/CFS.
In the last few days, the journal “Science Advances” published a paper by Hornig et al. reporting the presence of a specific biomarker in the early course of illness in ME/CFS patients. The Science Media Centre (SMC) then issued a briefing note of that paper to journalists giving what it said was “expert reaction to biomarkers for CFS/ME” That briefing note is fully set out on your website. It appears under the category “Mental Health”.
The “expert reaction” you wrote to brief journalists used comments on the “Hornig paper” from six “experts”. Two of these “experts” specialise in Psychological Medicine; one in Psychiatry; one in Child Health and two in Metabolic/Molecular Medicine.
I wonder if you could explain to us the following:-
1. Why, when Hornig’s Paper was clearly labelled “Immune Signatures in ME/CFS” you rephrased that to read “in CFS/ME”? Is it customary to rephrase Authors’ title descriptions of the subject illness?
2. Why you placed this briefing note to journalists “tagged” on your website under the category of “Mental Health”? Surely it should have been placed under “Brain and Neuroscience”?
3. Why you sought expert opinions from two psychologists, one psychiatrist and a reader in child health, on this paper? Hornig's paper deals with immunological bio-markers. Expert opinion from immunologists working in the field of ME/CFS was surely called for?
The SMC’s mission is clearly stated on its website, inter alia:- “To provide….accurate and evidence-based information about science… throughout the media, particularly on controversial and headline news stories when most confusion and misinformation occurs”
In your briefing to the media on Hornig’s paper, this charity believes you have not attained the high standards which your mission statement expresses.
We are sure that this was not intended. However we look forward to your answers to our questions.
In the interest of transparency, we will be placing this letter on our website and we would publish your reply there as well.
Yours faithfully,
Neil Riley
Chairman of the ME Association
REPLY FROM THE SCIENCE MEDIA CENTRE, 4 MARCH 2015
Dear Neil,
Thank you for your email about comments we sent out from experts on the recent paper in Science Advances. As you know I speak frequently with Dr Charles Shepherd, Medical Advisor for the ME Association and I’m involved with the CFS/ME Research Collaborative, so I am sure this topic will be discussed again.
The first thing I want to say is that every scientist I speak to about CFS/ME stresses that this is a real and debilitating disease. It concerns me greatly that some sections of the media like to portray CFS/ME as though it’s not real, and this is something we fight very hard to counter. It is of equal concern that some in the community seem desperate to distance the condition from psychological diagnoses or treatments, as though mental health is somehow inferior to, or less real than, physical health. I do not know any credible scientist who would make that distinction.
The Science Media Centre is an independent press office with the remit of improving the accuracy of science coverage in the UK national media. We work extremely closely with nearly 3,000 scientists and 1,200 press officers from scientific institutions across the UK. These scientists publish in peer-reviewed journals and are respected experts in their particular fields.
I have previously run a press briefing with Prof Ian Lipkin, one of the authors on the paper in question, as I recognise how important his work is. This latest research sounded like it could be very exciting news so I wanted to ensure that as many experts could comment as possible. As per usual, I approached all the scientists on our database that work in a relevant field (immunology, biomarkers, CFS/ME) along with a number of press officers, who we ask to find us further relevant scientists. I asked for comments on the robustness of the paper, the methodology and any implications of the work.
We send out all the replies that come back to us, but of course not everyone will reply. It is a real shame that there are not more researchers working in this field, something which the CFS/ME Research Collaborative is striving to change. We strive to have the best experts on our database and are in discussion with the British Society for Immunology to ensure that we continue to work with the most knowledgeable scientists.
In the end, a variety of scientists replied to my request for comments. Some work with biomarkers, others don’t; all are senior experts, publish in top peer-reviewed journals and have a deep understanding of the significance of research in their field. The idea that those who investigate psychological causes or treatments have nothing to contribute to a discussion of CFS/ME is absurd and I reject your suggestion that their views should not be sought. It should be a case of adding the voices of others, rather than removing theirs. In fact they all said this research is important, but that it needs to be independently verified and people shouldn’t get their hopes up too soon. I hope we can at least agree that the very worst outcome is that patients’ hopes are prematurely raised by hyped media reporting of a biomarker ‘proven to exist’. Patients of all illnesses deserve nothing less than accurate, responsible media coverage – especially when results are preliminary and in need of replication.
Finally, I used CFS/ME rather than ME/CFS as that’s the wording I was previously told by Dr Charles Shepherd and others was the most widely used. The comments were mistakenly tagged under mental health on the website – they should have been tagged with CFS/ME and immunology but I was out of the office and wasn’t there to advise my colleague. This has been updated.
Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two. I find this pitting of psychological vs physical medicine artificial and damaging, as do the very many scientists we work with from both fields. It is far more important to enable researchers to help patients and to make sure that high quality research is reported in a responsible, unhyped manner. The ME Association should welcome the fact that we achieved more measured and accurate coverage and ensured that patients’ hopes were not raised prematurely once again.
All the best,
Dr Edward Sykes
Senior Press Manager and Head of Mental Health & Neuroscience
FROM NEIL RILEY TO EDWARD SYKES, 6 MAY 2015
06/03/2015
Dear Edward,
Thank you for your response to the questions that I raised with the Science Media Centre in my emailed letter of 3rd March 2015.
My questions to you were:
1. Why, when Hornig’s Paper was clearly labelled “Immune Signatures in ME/CFS” you rephrased that to read “in CFS/ME”? Is it customary to rephrase Authors’ title descriptions of the subject illness?
You do not appear to answer “yes” or “no” to that question. The authors of the Paper used ME/CFS . Should not you have respected that? I take it you did ask them?.
2. Why you placed this briefing note to journalists “tagged” on your website under the category of “Mental Health”? Surely it should have been placed under “Brain and Neuroscience”?
Thanking you for correcting this error. You can understand why I was concerned about your mission statement and the need for accurate information.
3. Why you sought expert opinions from two psychologists , one psychiatrist and a reader in child health, on this paper? Hornig's paper deals with immunological bio-markers. Expert opinion from immunologists working in the field of ME/CFS was surely called for?
Thank you for explaining how you approach this by consulting experts “on your database”. It would seem that there is a lacuna in the database as we did not hear in your press briefing from immunologists working in the field of ME/CFS. A short phone call to us or the other research ME/CFS charities that have links to immunologists working in this area, or are funding immune system research – as we are, would have quickly filled that gap in the SMC’s knowledge.
May I ask why you write:
“The idea that those who investigate psychological causes or treatments have nothing to contribute to a discussion of MW/CFS (or CFS/ME) is absurd and I reject your suggestion that their views should not be sought”.
I have read question 3 above again and I am a loss to understand why you responded in that way. I did not suggest that their views should not be sought. I asked why they were asked to comment on a point of” immunology and ME/CFS” when they are not experts in that joint subject. It is in briefing journalists with quotes from people who did not have that immunological expertise that is a matter of concern. That is why I said that The ME Association believed that “you had not attained the high standards which your mission Statement expresses”.
I will conclude this email with something upon which I feel strongly.. It concerns your final paragraph in which you write:-
“Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two”
I cannot disagree with you more but we have a different role from yours. We are a charity and an integral part of the charity sector is “campaigning”. Charities have always sought to challenge and seek change in public attitudes; to represent those who are vulnerable and who have no voice. It is what we are.
When patients with this devastating illness complain about the treatment of their illness then every ME/CFS charity must listen, assess and then campaign for change. The ME Association was formed to represent those people. When patients tell us about generic treatments that have made their health worse; treatments based on assumptions about the cause of their illness, then it is our duty as a charity to campaign for change. Challenging assumptions in science is a recognised and vital part of its development. It is a function that organisations such as ours can, do and must perform. We will be more than happy to meet with you to discuss our respective roles in improving the lot of patients with this illness.
The Science Media Centre has a huge role to play for the good of all patients. We welcome its engagement with this difficult subject and encourage you to foster understanding of ME/CFS. That is why we raised the questions that we did about errors and how vital it is to have expert information by the leading scientists in their field. That must be made available to all. We ask no more.
Neil Riley
Chairman of The ME Association
PS. Thank you for sending a copy of my letter and your response to the CFS/ME Research Collaborative. I take I that you will add this response to the items sent.
Thank you for this robust response to the Science Advance article.
Are they credible as a Science Media Centre?? It certainly brings this into question and I hope their response is acceptable to ME sufferers, and the original Hornig paper is republished as the credible science advance that it is. I hope an apology will be issued to include all Dr Shepherd has said.
Thank you for writing this good letter.
“In your briefing to the media on Hornig’s paper, this charity believes you have not attained the high standards which your mission statement expresses.” Spot-on! The SMC briefing is embarassingly biased; they should be ashamed of themselves.
Interesting to contrast the SMC’s grudging and negative response to this important paper with those of Prof. Julia Newton and Prof Jonathon Edwards:
“From the perspective of a CFS/M.E. researcher I would consider this to be a very important study from a group who are known to be preeminent in their field. The cohort is large, the patients included well characterised and consistently phenotyped.” (Newton)
“Considering how difficult it has been to get high quality biological studies like this off the ground in M.E./CFS I think this is a major triumph.” (Edwards)
http://www.actionforme.org.uk/get-informed/news/latest-research/potential-biomarker-for-me/expert-comments.htm
Good letter.
Thank you to Neil Riley, Dr. Shepherd and the MEA for always trying so hard to right the wrongs and injustice that this terrible illness is subject to. The Science Media Centre seems to herald with a fanfare any of the studies/research that support this illness as being ‘psychosocial’ but gives such a muted, cautious response to the studies/research that demonstrate the ‘organic’ findings. We have to endure damaging headlines such as ‘Fear of Exercise’ in our Media and any physical findings just brushed aside.
Would like to take this opportunity to thank Neil for the ‘Chairman’s Message’ in the last two MEA Essential Magazines – you have shown in a concise poignant way the harsh realities of living with a very misunderstood illness and the heartache that goes with it. Thank you, it helps to know we’re not alone.
I’d just like to add my thank you to Neil Riley as well. I enjoy seeing your stories, which say it as it is, but of course I’m sorry that you endure what most of us have to as well.
As Jean says the harsh reality is brought out in your articles and it does help to know you are all trying your best against all the odds.
Well done team
I too think this letter by Neil Riley is absolutely brilliant. Thank you so much for all your hard work. I just don’t know how you do it You and your team are all wonders and really appreciated by me. Thank you again.
It might be useful to enquire which immunologists were sent the briefing. I must say I’m rather dubious about any immunologist being sent it…or I wager they were sent it rather later than their psyche colleagues. Yes, I’m cynical….. but with the SMC we have every reason to be.
(Of course I realise they would decline to provide that information based on some sort of privacy excuse..)
Thank you Neil Riley, for the very pointed questions you as of the SMC. Unfortunately the response did not address a number of the issues you raise. It merely seeks to conflate ME/CFS with mental illness, in accordance with their mission. The response seems to suggest that we should be grateful that they acknowledge ME/CFS (whatever they call it) as REAL. Not good enough. Would they be asking psychiatrists etc about a paper on cancer or surgical matters?
The SMC response is so inadequate, offensive and disingenuous, it is hard to know where to start. Science is on our side, though, and we must comfort ourselves with that knowledge.
I think that it’s clear from their reply, that having backed the wrong horse, the SMC’s face-saving strategy is to merge some aspect of psychology into all of their future reporting of M.E. related stories.
I wonder who persuaded them to do that?
Does Dr Sykes believe it is possible to be physically ill and mentally healthy, i.e. that physical illness is not always reducible to mental illness? If he does not then presumably he would rather, for example, refer someone with athletes’ foot to a psychiatrist than prescribe them antifungal cream and advise them to wear non-sweaty footwear – which is plainly absurd.
Therefore Dr Sykes, if he is being honest, must admit that he at the very least believes it is possible to have an illness which is primarily physical (in its cause and perpetuation) and only secondarily pyschological. In which case he accepts the distinction between mental and physical illness as both real and necessary (even if not absolute) and his attempts above to blur the distinction are gratuitous. They must be motivated by prejudice.
“The first thing I want to say is that every scientist I speak to about CFS/ME stresses that this is a real and debilitating disease”.
So is depression, so is e.g. psychosis. Real illnesses with organic aspects but mental, i..e with mental symptoms.. ME/CFS symptoms are overwhelmingly physical. We complain of physical illness. So do they mean “real and debilitating” and physical or “real and debilitating and mental”, or “both”? And if “mental” in any way dioes this imply of organic or psychological aetiology? And if organic, how are they investigating and reseaching this organic aspect? And if organic are they challenging the idea that where GET fails it is because of “fear of exercise”?. What is their view not on the vague term “reality” of the illness, but on its physical/mental nature and psychological/organic aetiology and/or resolution? “Reality” is a great term to hide behind.
“It concerns me greatly that some sections of the media like to portray CFS/ME as though it’s not real, and this is something we fight very hard to counter”.
Again what does “real” mean anyway? Agreed the media can be foolish at times and it has not yet in some quarters learnt that “mental” does not mean “non-organic”.Sadly some ME/CFS patients do make the same error. But this is helpful to the SMC, when it prefers to argue about “reality” rather than organic issues.. In the context of countering those who doubt the “reality” of CFS/ME, far too much of the subtext of such “countering” has been of the ‘yes, they are ill, in fact mentally ill, they deserve better, but they won’t accept this so they remain ill, they are their own worst enemies especially, subtext which then informs some popular “analysis”‘. This existence of this subtext may be denied but what else informs the approach referred to by Jean and Findlow, whereby the Science Media Centre to quote Jean will ‘herald with a fanfare any of the studies/research that support this illness as being ‘psychosocial’ but gives such a muted, cautious response to the studies/research that demonstrate the ‘organic’ findings’.
“It is of equal concern that some in the community seem desperate to distance the condition from psychological diagnoses or treatments”,
What we are desperate for, is quite simply not to be misdiagnosed and mistreated, and further to be treated effectively. Many are indeed desperate to distance themselves from those who, being in fact mentally ill, with e.g. hypersomniac depression, end up with a CFS diagnosis. Clinicians and the SMC should be equally desperate to make the distinction. THIS IS DIFFERENTIAL DIAGNOSIS. THIS IS WHAT ORGANIC RESEARCH AND PROPER PATIENT INVESTIGATION COULD DO. Yet SMC is far from the forefront of demanding such.
“as though mental health is somehow inferior to, or less real than, physical health. I do not know any credible scientist who would make that distinction”.”.
This is just a calumny. We reject a mental health label for a physical illness (or several), that is all. We do not deem mental health issues ‘inferior’, nor do we consider credible scientists should do so. What also we note is that mental health professionals themselves recognise and research and seek to diagnose and treat many MENTALl health problems by organic means, based on much varied organic research. And yet we, are offered the monolithic GET as our organic option based on little research, and when it fails, because the patient is really physically incapable of improvement, it is assumed we need more CBT to combat “fear of exercise”. It seems the more physical your illness the more mental the treatment.. This standard of medicine is what we see as inferior.
Moreover, it is ridiculous in Dr Sykes to say “I find this pitting of psychological vs physical medicine artificial and damaging…” when he has just said in the previous paragraph “The comments were mistakenly tagged under mental health on the website – they should have been tagged with CFS/ME and immunology…”. There is no way these two statements can be reconciled.
Firstly, thank you to Neil Riley & the MEA for writing this much needed letter. Your points were highly valid it’s such a shame that Dr replied with such vitriol.
I also find it unpalatable that Dr Sykes should suggest that we as a community see sufferers of metal health issues less worthy than we are. That we see psychiatry as a lesser medical form. Neither are true nor have either been stated. Psychiatry is highly important and it most certainly has its place within the medical world and our society. It is even useful for PWME who are suffering from a secondary depression due to the terrible physical onslaught of the illness.
The reason why we fight to separate ME from psychiatry is because ME is a neuro-immune illness. Treating this illness with talking & exercise therapy without taking care of the biology doesn’t work. If you were to treat someone with cancer as if they were bi-polar, the the patient who is bi-polar as if they have cancer, not only would you be likely to lose both patients but there would be uproar and you may find your self under review. If that was to be the standard treatment for all cancer patients and patients with bi-polar then that would cause public rage.
This is something PWME have been dealing with for decades but there is no public uproar. By mixing up ME with mental health issues, the patient cohort in research skews the results. As it would should bi-polar patients be mixed up with cancer patients for a clinical trial. Again this would be career suicide.
All patients, no matter their health issues deserve the right and appropriate care. No one illness mental or physical is lesser nor greater. They all cause suffering and merit the concept ‘first do no harm.’
I happened to be reading an interesting – though quite long – Guardian piece earlier today about people who opt to donate heir bodies to medical science after death, and by coincidence Ed Sykes of SMC is featured halfway through.
http://www.theguardian.com/science/2015/mar/10/body-medical-research-donate-death-science-brain
Ed is described as a ‘science communicator’ in the article, which made me smile, as he is certainly not communicating very well with MEA at moment. If I had not already known who he was from this exchange with MEA, I would have thought what an interesting guy, and how commendable is his compassion, and curiosity about neuroscience.
However, it has to be said that this curiosity/compassion does not apply to his understanding of ME. He simply shows no curiosity at all. Which, in an otherwise curious person, only confirms for me that the prevailing biopsychosocial establishement narrative re. ME in UK is all powerful, and very much alive and kicking
http://www.lymediseaseaction.org.uk/wp-content/uploads/2011/05/bransfieldneuro.pdf
The above is an example of how psychiatry can be applied to an infective disease – Lyme, here, but with broader relevance, incl to immune mediated/involving conditions without apparent infection.
This Ed, is an example of the coming together of the mental and physical by consideration of the organic.
Prof Davis (RIP) the fibromyalgia man at Barts would work on this kind of thing. Not heard of certain so called CFS/ME “experts” doing many presentations or papers on this fascinating area of mental medicine though, Strange, eh? Hope the MEA will get your view.
I see no “pitting” of mind against body in the above, but I would love to see this type of serious psychiatry pitted against the behavioural psychology of CBT/GET, which is not in any way a comprehensive view, even of the psychiatric aspect of ME/CFS.
Better of course to subsume CBT/GET into a general, nuanced psychiatric appreciation of ME/CFS, for those patients who require such , while AT THE SAME TIME, SO AS NOT TO PIT PHYSICAL AND MENTAL AGAINST ONE ANOTHER, pursuing proper patient investigation and biophysical research.
Stiil, if you take so little care in your letter to Neil, you probably won’t be bothering to read our comments….