As the summer marketing offensive continues for Dr Suzanne O'Sullivan's new book It's All in Your Head: True Stories of Imaginary Illness – in which the consultant neurologist devotes a whole chapter to writing off ME/CS as a psychosomatic illness – the Countess of Mar has issued a weighty challenge.
In a letter to Dr O'Sullivan, the Countess has come up with a host of reasons why the author should change her mind – not least suggesting that Dr O'Sullivan is out of touch with the most up-to-date research on the illness.
The letter was copied to ‘Times' columnist David Aaronovich who accepted the psychomatic line on ME/CFS hook, line and sinker in a book review on June 6 and to the book's publisher, Chatto and Windus.
TEXT OF THE COUNTESS' LETTER
Dr Suzanne O’Sullivan
National Hospital for Neurology and Neurosurgery
33 Queen Square
LONDON
WC1N 3BG
9 June 2015
Dear Dr O’Sullivan
I write to you as an Independent crossbench member of the House of Lords where I have been since 1975. I am a Deputy Speaker in the House. For more than 20 years I have represented the interests of people with ME/CFS and other MUPS. I am patron of several ME charities and Chairman of Forward-ME.
I have read David Aaronovitch’s review of your book: “It’s all in Your Head – True Stories of Imaginary Illness” and I have listened to what you had to say on Radio 4’s Start the Week programme yesterday, though I have not read your book. Aaronovitch quotes you in the introduction to the chapter on ME as admitting that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least.” He goes on to say that “This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic – caused by the mind and not by a disease –is intensely hostile. I have experienced this hostility.” I assume the last sentence refers to him personally.
Sadly, both you and he are right about the hostility to the views you both promote, but you give the wrong reasons for that hostility. In recent years there have been a host of papers that demonstrate that ME/CFS is a disease as well as an illness. Firstly the Canadian Consensus document on ME/CFS, published in 2003, gave good guidelines for diagnosis and treatment of people with ME. This was followed by the more comprehensive Myalgic Encephalomyelitis – International Consensus Document published in 2011. More recently, the highly respected US Institute of Medicine in its report “Beyond Myalgic Encephalomyelitis/ Chronic fatigue Syndrome: Redefining the Illness” released on 10 February 2015, made clear that the primary message of the Committee’s report is that “ME/CFS is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients.” Patients with the disease have always known this and are, understandably, deeply hurt and offended by the denigration they receive from some medical practitioners.
I admire the fact that you believe that people who suffer psychosomatic illnesses should be treated with compassion and understanding but I am equally disappointed that you appear to have failed dismally to keep abreast of current research into ME/CFS. Had people like you in senior positions really tried to discover what is at the root of the symptoms suffered by the patients that you see more progress might have been made in the diagnosis and treatment of this dreadfully neglected disease.
For example,on 30 May this year in Metabolomics Armstrong et al wrote: “Metabolic profiling reveals anomalous energy metabolism andoxidative stress pathways in chronic fatigue patients.” Have you ever thought of metabolic profiling for your profoundly fatigued patients, I wonder? I do realise that there are vast numbers of papers of variable quality published each year, but I really do think that if one is professing an expertise in a particular disease or illness one should try to keep abreast of current research, don’t you?
You appear to be unaware that research shows that ME is an organic multi-system neuro-immune disorder with protean symptomology; some consider it likely to bean autoimmune disease with the target organ being the vascular endothelium.
For the avoidance of doubt, here are some facts that may have escaped you:
* Since 2005 ME has been included in the UK National Framework for long-term neurological conditions.
* On 30 January 2006 the then health Minister,Lord Warner, said on record: “There is only one World Health Organisation International Classification of Disease code for chronic fatigue syndrome/Myalgic encephalomyelitis, which is G93.3.” (HL3612)
* On 2 June 2008 the Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham) stated: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition ….My Lords, I have acknowledged that CFS/ME is a neurological condition.” (HLPQ:Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)
* On 21 November 2011 Lord Freud, Minister fo rWelfare Reform, confirmed in a letter to me that the Department for Work and Pensions does not consider ME/CFS to be a mental disorder. The letter was unequivocal: “the Department of Health has indicated that they have ‘always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD)under the ICD code G93.3, subheading other disorders of the brain’. The DWP isin agreement with this view. Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder.”
* The US National Institutes of Health, one of the world’s foremost medical research centres, convened a Pathways of Prevention working group which, in December 2014, published its draft Statement entitled“Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”.It is an important document as it signifies a major change in attitude towardsME/CFS. For example:
“Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS.
“This is not a psychological disease in aetiology.
“fMRI and imaging technologies should be further studied as diagnostic tools and as methods to better understand the neurologic dysfunction of ME/CFS.”
As a neurologist, I am sure you will find these views of interest.
Further research from the US posits that true ME (as distinct from the ubiquitous chronic “fatigue”) is indeed an autoimmune disorder: “Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases consistent with immune activation in the central nervous system, and a shift towards an allergic or T-helper type-2 pattern associated with autoimmunity….Profiles of ME/CFS subjects also differed from those of MS subjects, withME/CFS cases showing a markedly greater degree of central nervous system immuneactivation as compared with those with MS” (M Hornig et al: Molecular Psychiatry 31 March 2015: doi:10.1038/mp.2015.29)
The evidence is now so strong that ME/CFS is a serious multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder.
I do hope that you will take my submission seriously and reconsider your belief thatME/CFS is a psychosomatic disorder.
I look forward to receiving your considered response.
Yours sincerely
Countess of Mar
Copy: DavidAaronovitch.
Chatto and Windus – Lisa Gooding, Publicity.
A copy of the Countess' actual letter can be downloaded HERE.
The MEA wrote a letter to The Times about the book review but it was not published. The text can be found HERE.
We are so lucky to have The Countess of Mar as our advocate!
I am glad that it was an informed professor of neurology that diagnosed me back in 1991.
Glad too – not for the first time – to have my consultant neurologist diagnosis in early 1984… I would love if Prof Behan and Dr O’Sullivan could have a conversation.
We are used to nonsense in medical journals and Sunday papers, but this book is troubling as it has big mainstream publishing PR behind it – she will do the big book fests and be lauded here there and everywhere. Her book will – at least initially – sell well as ‘controversial’ popular science…
How sad and disheartening for those of us who have spent, literally, decades trying to educate others about Ramsay- ME, that a careless neurologist throws pie in our faces with her patronising, irresponsible chapter ‘Rachel’. Diagnosed via Google, a hopeless case, who of course refuses psychiatric therapies! If that isn’t manipulative, unhelpful science, I don’t know what is.
I had thought of sending Dr O’Sullivan a copy of my novel, but on reflection she doesn’t really deserve the gift, she should get herself a copy.
Thank you so much Lady Mar for this challenging letter. I travelled to Newcastle to visit the CFS Clinic only yesterday and found the comments of my consultant were seemingly in line with the views of this book, as were the comments from my Pain consultant at James Cook.
The CFS Consultant was going to buy Dr O’Sullivan’s book as he found it ‘interesting’.
I came away with information on Mindfulness and links to another author with similar views. Apparently the nerve pain is all in my brain, as certain drugs stop it! I actually suffer from Small Fibre Neuropathy and it is so bad that I sit in the dark and wear dark glasses to go out. I’ve been suffering for nearly 10 years now with ME and going round in circles due to Doctors disbelief.
The Neurologist I saw last December did not even discuss SFN and told me out right that he agrees with the psychiatric, psychological view of CSF (as he calls it) and we would just have to agree to disagree. I agreed and left. Following my complaint letter, with enclosed information on the new research and IOM report, he has had a sudden ‘sea change’ in his opinion!!
He now states he’s always known it to be a serious systemic disease. Amazing. I will send on your letter, if I may, to cement his new view of ME and also to the other consultants, just to make sure they know too. The prevalence of ‘it’s all in the head’ seems to be rearing it’s ugly head once again.
I would be grateful if you could make Professor Tricia Hart aware of the difficulties faced by ME patients in the South Tees Hospital Trust and Newcastle Hospital trusts please.
Thank you
PS. The neurologist also disagreed with NICE removing ME from a mental health categorisation. He said they were pressured into it!! Apparently WHO has got it wrong as well! But he’s now denied all this.
I thought you might benefit from knowing what we are up against – still.
Thank you again
Is it possible to ask ME sufferes to endorse Lady Mar’s letter and send on to Dr O’Sullivan please?
Hope, did you see Dr Spickett at Newcastle? I have seen him many times over the last decade, and although I was not sure what his views were in the early years due to the way he expresses himself, I am sure now that he has no time for psychological explanations of ME. He has written several supportive letters for me to help me fight for benefits quoting research, illness classification and the likely genetic predisposition. He does also like mindfulness as a method of helping people cope and manage symptoms, which I have found of great benefit, though it’s obviously no cure!
I also suffer with bad neuropathic pain, though I have not been diagnosed with SFN. I have found it quite frustrating not understanding this pain, whether it is nerve damage or neurological issues, and as it keeps getting worse what the future holds. Gabapentin works very well for now, but it still affects my life massively. I actually had mild symptoms of this many years pre-ME!
One can only put such ill informed & unacceptable theories down to a combination of ignorance & arrogance & is something that is quite unbecoming of a qualified medical practitioner. The notion that this appalling condition is all in the head & that, as such, the victims themselves are partially (or wholly) to blame for their own misfortune is not only quite wrong but also extraordinarily insulting to sufferers, many of whom have had to endure this insufferable & interminable condition for decades. If I were a less forgiving soul I would wish upon Dr O’Sullivan just one day’s experience of what I have had to cope with for 35 years, but I wouldn’t wish that upon my worst enemy!
Many thanks, as ever, to Lady Mar for stepping up yet again in the name of truth about ME. This is a really excellent letter. I don’t see how anyone could possibly dispute what she says – it will be really interesting to see how O’Sullivan and Aaronovitch reply.
I am very dismayed, though not entirely surprised, that the Times didn’t bother to publish Dr Shepherd’s letter about the book review.
Hi Potsy Yes it was Dr Spickett I saw and he has always been very helpful in letters etc. I think the lines are possibly becoming blurred between ‘all in the head’ and ‘all in the brain’. I was told that in 10 years time we would know how neuroscience could show how past events and psychological effects could manifest as physical symptoms, e.g. the neuropathic pain is merely the brain reacting to over excitability rather than their being any nerve damage. This came from the Pain Clinic. I have my own theory.
Dr Spickett commented that it’s like an old switch board where the wires are plugged into the wrong place, thus sending signals to the wrong place, or computer software not doing what it’s supposed to do and seizing up. The hardware is there but the software doesn’t work. Our nervous system has crossed wires!
He likes to keep an open mind on it all, which I agree with. However, numbing the pain with medication is like using a sledge hammer to crack a nut, but this is all that we have at the moment, he said. In other words research has not caught up.
Although this particular book is shocking and ill informed, many doctors still support the views of it and I find it worrying that we are being put on hold once again by psychosomatic connections and excuses that there could be answers along the lines of both that and crossed wires.
We have a disease. A Neurological disease. It needs urgent investigation due to the misdiagnosis of up to 50% of patients and the lack of research funding. These lines of thought need to be put to bed and further investigations made to at least save needless suffering and years of ever decreasing circles visiting hospitals to end up managing yourself and being told ‘we don’t believe you’
It is a serious systemic disease affecting millions across the world, as I’m sure you know and yes I’m on Pregabalin now, as Gabapentin did not suit me. I’m sorry you suffer with neuropathic pain as well, but the only solution, at the moment I’m sorry to say, is medication to ease the pain and CBT or relaxation exercises help a little for some people.
Lady Mar has spelled out for us all that we should be quoting if doctors are clearly not up to date and I’ll be carrying copies of her letter, as she says it all so clearly.
I hope this makes sense as my brain gets tired very quickly.
The big problem is that so many people are diagnosed with M.E when they often don’t have it so it muddies the waters for those of us with it. I run a support group and come across people who are clearly suffering from other conditions but have been labelled with M.E. They may be helped by therapies which would not work with neurological M.E Until this misdiagnosis is addressed we are never going to get anywhere.
Thank you for addressing this author’s misinformation on the patient community’s behalf. I do think it is professional suicide for Dr. O’Sullivan to continue to ignore the abundance of scientific data that contradicts her theory on ME/CFS. I wonder if she will she stay embedded with her obsolete ideas or be able to move with us into this exciting era of discovery.