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ELLE Magazine: Chronic fatigue syndrome is not all in your head (Dr Suzanne O'Sullivan)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 3, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    ELLE Magazine: Chronic fatigue syndrome is not all in your head

    http://www.elleuk.com/…/chronic-fatigue-syndrome-is-not-al…/

    I have only just seen this article - so could I point out that although The MEA is correctly referred to at the end as a source of help and information for people with ME/CFS, we have not seen or been consulted about this article

    Following publication of Dr Suzanne O'Sullivan's book, which classifies ME/CFS as a psychosomatic illness, the Forward ME Group of charities discussed this book. Following this discussion the Countess of Mar wrote to Dr O'Sullivan

    The letter is produced below.

    We never received a reply from Dr O'Sullivan........

    The MEA will be writing to Elle magazine about this article.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    June 2015

    Letter from the Countess of Mar to Dr Suzanne O'Sullivan:

    The Countess of Mar, an Independent Cross-Bench Peer in the House of Lords, is a member of the All Party Parliamentary Group on ME, and chairs Forward-ME, the forum for the professional consideration of ME-related issues. The Countess has sent a detailed letter (published below) to Dr O’Sullivan outlining her concerns about the references to ME in the book, and offering some suggestions that Dr O’Sullivan might like to take up. As she concludes, “I do hope that you will take my submission seriously and reconsider your belief that ME/CFS is a psychosomatic disorder.”

    Background:

    On June 6th 2015, The Times newspaper published a review by David Aaronovitchof a new book called ‘It’s All in Your Head: True Stories of Imaginary Illness’ by Dr Suzanne O’Sullivan who is a consultant neurologist at the National Hospital for Neurology and Neurosurgery. The book received positive coverage in the press, but there has been particular concern about references to ME in the book, which David Aaronovitch highlights in his review. As he said, “…O’Sullivan admits 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’. 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.”

    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 [medically unexplained physical symptoms], 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 and oxidative 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 be an 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 for Welfare 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” [available here] . It is an important document as it signifies a major change in attitude towards ME/CFS. For example: a) “Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS”; b) “This is not a psychological disease in aetiology; c) “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, with ME/CFS cases showing a markedly greater degree of central nervous system immune activation 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 that ME/CFS is a psychosomatic disorder.

    I look forward to receiving your considered response.

    Yours sincerely

    Countess of Mar

    [​IMG]
     
    Last edited: Nov 3, 2016
    Mel9, Ritto, Binkie4 and 28 others like this.
  2. Chieftain

    Chieftain

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    The snowball is rolling guys!
     
  3. aaron_c

    aaron_c Senior Member

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    Does anyone else find it somewhat ironic that O'Sullivan's book highlights a cracking egg? It makes me think of Humpty Dumpty.

    Hooray for the countess of Mar. I hope that O'Sullivan truly considers her letter.
     
  4. Luther Blissett

    Luther Blissett

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  5. worldbackwards

    worldbackwards A unique snowflake

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    I've seen this before. Why it's got yesterday's date on I've no idea.
     
  6. Sean

    Sean Senior Member

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    We are way past it being merely intellectually embarrassing. There are no excuses anymore for O'Sullivan's poisonous drivel, and frankly there never was. The BPS crowd have never put a substantial case on the table for their claim. Never. It has always been based on nothing more than a highly selective use of evidence and a whole lot of distortion, misdirection, smears, and straight lies.

    There is a special place in hell for people who persist in perpetuating this kind of fraud and cruelty on sick vulnerable people, especially on children.
     
    Last edited: Nov 4, 2016
    atleje, perrier, Snowdrop and 14 others like this.
  7. Chrisb

    Chrisb Senior Member

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    The SMC must have been putting in a great deal of overtime lately. Who will be funding this, the Wellcome Trust? To whom is the funding application to be submitted-the Wellcome Trust? Looks like there should be no problem there then.
     
  8. Molly98

    Molly98 Senior Member

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    Oh God, is there no end to this drivel.
    I have to say though I think the letter from the Countess of Mar is absolutely brilliant. She works so had on our behalf, what an amazing woman
     
    PennyIA, perrier, Cornishbird and 7 others like this.
  9. I'd rather they were dealt with very harshly by the Law on THIS side of the Curtain of Death.
    They are child abusers, sadistic torturers and mass murderers, in fact it is a true genocide.
    The only reason we haven't been gassed or shot is, as yet, is that our societies haven't yet dropped to the nadir that occurred in Germany and Russia...but it's coming and the stupid, compassionless, wicked evil *we* see and suffer, is proof of that.
     
    Snowdrop and TiredSam like this.
  10. charles shepherd

    charles shepherd Senior Member

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    Yes, The Countess of Mar is brilliant!

    She is a Patron of The MEA and we are working very closely with her on a number of key issues - DWP benefits, The PACE trial, and replacement of the 2007 NICE guideline on ME/CFS in particular - at the moment
     
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  11. slysaint

    slysaint Senior Member

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    Hutan and worldbackwards like this.
  12. charles shepherd

    charles shepherd Senior Member

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    Previous (rather long) coverage of ME/CFS in ELLE magazine - which was OK:

    http://www.elle.com/beauty/health-f...rome-a-celebrated-authors-untold-tale-517101/

    This was largely devoted to Laura Hillenbrand - author of 'Seabiscuit'

    We don't hear much about LH on this side of the pond these days…...

    From ELLE: Hillenbrand has chronic fatigue syndrome (CFS), a cruel medical condition with an unfortunate name that fails utterly to do justice to an often debilitating array of so far unexplained symptoms, including muscle pain, unrelenting exhaustion, digestive problems, environmental hypersensitivity, occasional fevers, and that aforementioned vertigo. "Laura is on the more severe end of the spectrum," says Fred Gill, MD, a noted specialist in infectious disease at the National Institutes of Health, who treated her for many years. "It's very serious. It stops people's lives."
     
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  13. alex3619

    alex3619 Senior Member

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    I wrote this in one of my blogs:

     
  14. AndyPR

    AndyPR RIP PR :'(

    Wildcat likes this.
  15. Snow Leopard

    Snow Leopard Hibernating

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    I don't do Facebook, but it would help if someone very briefly pointed out the much more accurate Elle article on ME/CFS (and LH) mentioned above.
     
  16. alex3619

    alex3619 Senior Member

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    I posted this:

    In the history of medicine not one claim of a supposed psychosomatic illness has been ever proven. On the contrary, claims of discrete illness being called psychosomatic include tuberculosis, type 1 and type 2 diabetes, cancer and especially breast cancer (because, you know :-S women are weak), multiple sclerosis, rheumatoid arthritis, lupus, gastric ulcers and many many more. Batting average psychsomatic zero, physical a huge number.

    The problem is that it takes medical diagnostic technology to advance before we figure out what it is. Its not simply psychiatric or psychosomatic because we cannot figure out what it is, that's a fallacy.

    We know a lot about the physiology of ME (CFS diagnostic criteria are less accurate), the core illness behind CFS. We have several candidate blood tests in development, several treatments, two potential cures in late stage research (look for an announcement in 2018) and hundreds if not thousands of physiological abnormalities. What these abnormalities clearly show, as stated in the IOM evidence based review, is that this illness is physical. We have abnormal immune cells, neurological problems, energy production problems, and abnormal immune signalling.

    There is no room for psychosomatic claims, not in ME, nor CFS, nor any other illness. There is room for people with dire illness and brain illnesses having psychiatric symptoms, but that is actually a very different claim.

    Alex Young, BSc (Biochemistry), BInf, long term disabled ME patient.
     
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  17. anniekim

    anniekim Senior Member

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    I am have a feeling this was in the print copy a while back, they have just added a new headline.
     
  18. Molly98

    Molly98 Senior Member

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    Great response Alex, brilliant put :)
     
    alex3619 likes this.
  19. Yogi

    Yogi Senior Member

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    Just learnt of this recently. EVERYONE SHOULD USE THIS WEBSITE AND ARCHIVE PAGES FOR THE PURPOSE OF HISTORY .

    https://archive.org/web/

    This is especially important for controversial stuff written by the psychs which is likely to be removed in future so they can erase and re-write history.

    If possible you can then add it to MEPedia so that the whole scandal and fraud is as well documented........for the inevitable lawsuits which will come soon!!!

    http://me-pedia.org/wiki/Welcome_to_MEpedia


    eg. Here is a good example

    https://web.archive.org/web/2014062...treatments-for-chronic-fatigue-syndromeme-2-2
     
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  20. Wildcat

    Wildcat

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    alex3619 likes this.

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