Read the Science Media Centre correspondence – our letters, their replies| 4 March 2015


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.