Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Situation of ME in Brittain to this day, a must see!

Discussion in 'General ME/CFS News' started by Frank, Nov 15, 2009.

  1. Frank

    Frank Senior Member

  2. bananaman


    Bognor UK
    Truly shocking to watch these video's!

    I can't take in the the stuff these people put out any more - it's like reading articles about how there was no holocaust!
  3. Alice Band

    Alice Band PWME - ME by Ramsay

    I'd just like to confirm that yes, it really is that bad.

    Last year I was involved in the case of a young person committed to a UK Psychiatric Hospital. The conditions of the ward were so bad that I wouldn't let a dog stay there.

    He was drugged against his will and when I first met him was unable to think, make eye contact or speech coherently.

    This person had been a patient of a well known, respected neurologist in the UK.

    They hospital refused to accept that ME was a physical illness and considered that by trying some of the treatments the person was doing, they were self harming

    When the patient fell, they were not offered help and the falls were considered to be "attention seeking"

    This is not the first or the last UK ME patient to be in this position and I always think "there for the grace of god, go I".

    Fortunately, we were able to get the Neurologist involved and have this person transferred to a charity, nursing home. There are few facilities like this in the country and they are vastly over-subscribed.

    The change in the person's demeanor once we had the enforced drugging stopped was dramatic. They were finally able to talk, think and feel again.
  4. alice1

    alice1 Senior Member


    I'm a newbie here and I'm trying to pick my jaw up off the floor.
    I thought the U.K. was so far ahead of the rest of the world on understanding this wee problem of ours.
    I hope these idiots were on some obscure cable channel and not prime time network.
    I live in Canada and I get this nonsense I didn't expect it form over the pond.So sorry.
  5. Min

    Min Guest

    No,these are training videos for UK medical staff, still in use as far as I know. The situation here is dire & I'm sorry to hear it is the same in Canada..
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    @ alice1

    The lady in these training videos is Professor Trudie Chalder, PhD, a former mental health nurse. She is based at King's College London and has worked on research studies with Wessely.

    "King's College London Professor Trudie Chalder
    Professor of Cognitive Behavioural Psychotherapy"

    "Mental Health Lead Professor Trudie Chalder Professor Chalder is a specialist practitioner in Cognitive Behaviour Psychotherapy and International expert in Cognitive Behaviour Therapy. Professor Chalder is current Director of the Chronic Fatigue Syndrome Research and Treatment Service at SLAM NHS Trust."

    Prof Chalder is one of three Principal Investigators for the PACE Trial (the other two being Sharpe M and White P).

    As well as "CFS" research, clinical work, training materials and conference and symposia presentations, Chalder has, over the last few years, also moved into the area of research into CBT applications in diabetes and multiple sclerosis.

    She is currently co-Principal Investigator (with Professor Rona Moss-Morris) of the

    saMS trial (supportive adjustment for multiple sclerosis):
    a randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis


    If you can steel yourself to view it, here is Rona Moss-Morris selling CBT to the US:

    Video of presentation by Prof Rona Moss Morris to School of Nursing, University of Wisconsin.

    Medically Unexplained Symptoms: Medicines Dirty Little Secret

    Rona Moss Morris
    Professor of Health Psychology, University of Southampton UK

    October 2007, 46 minutes

    Rona Moss Morris, PhD, describes her program of research to enhance coping with symptoms for individuals with chronic fatigue syndrome and irritable bowel syndrome using a model of self-regulation and cognitive behavioral therapy.


    Here's a PowerPoint from Prof Lynne Turner-Stokes, Herbert Dunhill Chair of Rehabilitation - also Kings College London

    From the website of the EACLPP (European Association for Consultation Liaison Psychiatry and Psychosomatics)

    PowerPoint Presentation: (PowerPoint Reader required): Stokes MUS.ppt

    Medically Unexplained Symptoms: an approach to rehabilitation

    Prof Lynne Turner-Stokes, Herbert Dunhill Chair of Rehabilitation, Kings College London

    Slide 6:

    Establish a different attitude
    Illness can be a social condition
    Engenders a caring response
    Admiration from peers
    Isnt she brave!
    Some who has found a prop
    Does not necessarily want it removed
    Seek medical attention
    For confirmation not cure
    Diagnosis is an end in itself

    Slide 26:

    Some patients
    Require their medical condition
    Part of own strategy for dealing with life
    Come to clinic
    Not for a cure
    For support and bona fide status
    Of being under care of the doctor
    Remove the crutch
    They will find another

    Slide 27:

    Secondary gain
    Disability may hold advantages for them
    Financial /Environmental
    Benefits, equipment, accommodation
    Support, care and attention
    From family, friends/carers
    Excuse for avoidance
    E.g of unwanted sexual attentions
    Social mystique or importance
    Having a rare condition


    Here is Danish "CFS" researcher, Per Fink [who was a member of the CISSD Project and is a member of the EACLPP (European Association for Consultation Liaison Psychiatry and Psychosomatics) "MUS Study Group"].

    The Irish College of Psychiatrists Bulletin
    Vol 3, Issue 1. May 2008 May 08.pdf

    In which his keynote address is reported on Page 8:

    [...] His presentation also examined the claims of several of the pseudonym somatoform conditions which have been invented by various branches of medicine. He found that there were no differences in the symptoms reported by patients diagnosed with Fibromyalgia; Multiple Chemical Sensitivity; Sick Building Syndrome and Chronic Fatigue Syndrome confirming the long-held clinical opinion that these are all the same condition: somatoform disorder. He also suggested a possible new name for the condition; Body Distress Disorder which he believes may be more acceptable to patients and GPs.

    Don't you just love 'em?
  7. Katie

    Katie Guest

    It's not good here. I self manage, I rarely speak to my doctor about ME, I don't even though what he feels about it, I just tell him I don't need anything from him and don't make a fuss. The strange Catch-22 situation here is - you don't make a fuss and you're perceived as satisfied with the lable 'patient' and don't want to get better. Conversely, ask for treatment, tests and referrals and you're an attention seeking hypochondriac.

    There was a fascinating psychological study once where a perfect mentally and physically health person was sent into a British (I think, either way it works cross continents) mental hospital and was asked to observe the behaviour of the staff and how he was treated and to behave exactly as he should: polite and obedient. The notes and reports by the staff were then examined when the test concluded. They interpreted his note making as odd, he was insular and not sociable among other 'odd' habits. Because they had the preconceived idea he was mentally ill, the saw everything he did as inappropriate. The people who did the study said they would do this again and at the end of each month asked the hospital how many moles there were. They would come up with various figures of moles but the study never sent another person.

    This pretty much sums up our dilemma, psychiatry and psychology is seen as hard science and almost infallible. Not just in illness but in treatment of paedophillia too but I won't go into that.

    If you can self manage here, you do. If you can treat pain alternatively, you do. Those who need medical help are at the mercy of our system. I self manage and it works well for me. Still, better than the 80s, you don't want to hear the stories from back then.
  8. liverock

    liverock Senior Member

    Dr Sarah Myhill, the UK CFS doctor, describes the claimed "success" of CBT by psychiatrists, is mainly due to ME patients taking one session and then never returning for any more due to the pain and stress involved.

    Due to their arrogant attitudes they never bother following up patients who quit CBT and just assumed they are cured.
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Editorial: Is there a better term than "Medically unexplained symptoms"?

    (Previously published on Co-Cure)

    An Editorial to watch out for in a forthcoming issue of the Journal of Psychosomatic Research.

    The In Press version is already available online (purchase required).

    [Current issue is Volume 67, Issue 5, Pages A1-A4, 367-466 (November 2009)]

    Journal of Psychosomatic Research

    In Press

    Is there a better term than "Medically unexplained symptoms"?



    Copyright 2009 Published by Elsevier Inc.

    References and further reading may be available for this article. To view references and further reading you must purchase this article.


    Francis Creed a, Elspeth Guthrie a, Per Fink b, Peter Henningsen c, Winfried Rief d, Michael Sharpe e and Peter White f

    a University of Manchester, Manchester, UK
    b University Hospital Aarhus, Denmark
    c Technical University, Munich Germany
    d University of Marburg, Germany
    e University of Edinburgh, UK
    f Queen Mary University of London, UK

    Received 24 August 2009; revised 24 August 2009; accepted 7 September 2009. Available online 17 October 2009.

    Article Outline


    "Medically unexplained symptoms" - one advantage, but many reasons to discontinue use of the term

    Criteria to judge the value of alternative terms for "medically unexplained symptoms"

    Terms suggested as alternatives for "medically unexplained symptoms"

    Implications for treatment

    Implications for DSM-V and ICD-11




    ME agenda Note:

    Francis Creed is Co-Editor of the Journal of Psychosomatic Research.

    Francis Creed, Per Fink, Peter Henningsen and Winfried Rief were all members of the international CISSD Project, (Principal Administrators: Action for M.E., Co-ordinator: Dr Richard Sykes, now engaged in the "London MUPSS Project" in association with the Institute of Psychiatry). Michael Sharpe was the UK Chair of the CISSD Project.

    Michael Sharpe and Francis Creed have been members of the APA's DSM-V Somatic Distress Disorders Work Group since 2007.

    Francis Creed (UK), Peter Henningsen (Germany) and Per Fink (Denmark) are the co-ordinators of European EACLPP MUS Work Group.

    Francis Creed and Peter Henningsen were the authors of "A white paper of the EACLPP Medically Unexplained Symptoms study group - Patients with medically unexplained symptoms and somatisation - a challenge for European health care systems", January 2009. Draft white paper here:

    Per Fink is a member of the Danish Working Group on Chronic Fatigue Syndrome, established in August 2008 and expected to complete its work in spring 2009.

    DSM-V is anticipated to be finalised in May 2012; field trials were expected to start in October 2009. No updates or reports have been published by the APA's DSM-V Task Force or Work Groups since April 2009.

    An Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV - a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed on behalf of the DSM-V Workgroup on Somatic Symptom Disorders, was published in the June 2009 issue of the Journal of Psychosomatic Research.

    Full text of DSM-V WG preliminary report can be accessed here:

    The International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders most recent meeting took place on 28 - 29 September. It is anticipated that a Summary Report of the meeting will be available in late November/December.

    DSM-V and ICD-11 have committed as far as possible "to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria" with the objective that "the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM."

    For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

    Availability of EACLPP white paper

    The In Press version of the Editorial:

    Is there a better term than "Medically unexplained symptoms"? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P

    to be published in a forthcoming issue of the Journal of Psychosomatic Research (already available online - purchase required) needs to be read in conjunction with the white paper to which I drew attention, earlier this year:

    The European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP)

    "A white paper of the EACLPP Medically Unexplained Symptoms study group: Patients with medically unexplained symptoms and somatisation - a challenge for European health care systems" ( )

    The White Paper can be downloaded from the EACLPP site here:

    ME agenda Note:

    The document is approx 76 pages long, including tables and charts. I had considerable difficulty opening this document, in May, due to a corrupted table and note that the file on the EACLPP site remains glitchy. A copy of the document was obtained directly from the EACLPP, in May, and has been uploaded to ME agenda site. Note that there may be some revisions to the document as supplied in May but it will serve as reference if others experience difficulties opening the file from the EACLPP website.

    If you would like a copy of the file as a Word.doc attachment, please email with "EACLPP MUS DOC" in the subject line and I will forward a copy to you. [600 KB]

    Or download Draft white paper- prepared by Peter Henningsen and Francis Creed January 2009 from ME agenda WordPress site at:

    "The Editorial 'Is there a better term than "Medically unexplained symptoms"?' discusses the deliberations of the EACLPP study group:


    The European Association of Consultation Liaison Psychiatry and Psychosomatics (EACLPP) is preparing a document aimed at improving the quality of care received by patients who have "medically unexplained symptoms" or "somatisation" [1]. Part of this document identifies barriers to improved care and it has become apparent that the term "medically unexplained symptoms" is itself a barrier to improved care...

    ...The authors of this paper met in Manchester in May 2009 to review thoroughly this problem of terminology and make recommendations for a better term....The deliberations of the group form the basis of this paper..."


    "Our priority was to identify a term or terms that would facilitate management - that is it would encourage joint medical psychiatric/psychological assessment and treatment and be acceptable to physicians, patients, psychiatrists and psychologists."


    "Terms suggested as alternatives for "medically unexplained symptoms"

    The group reviewed terms which are used currently or have been proposed for the future. An extensive list was abbreviated to the following 8 terms or categories: The terms we reviewed were:

    1. Medically unexplained symptoms or medically unexplained physical
    2. Functional disorder or functional somatic syndromes
    3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
    4. Somatic symptom disorder
    5. Psychophysical / psychophysiological disorder
    6. Psychosomatic disorder
    7. Symptom defined illness or syndrome
    8. Somatoform disorder"


    "Implications for DSM-V and ICD-11

    There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV "somatoform" and related disorders. In this working group, similar concerns about the use of the term and concept of "medically unexplained symptoms" have been raised [12]. The current suggestion by the DSM-V work group to use the term "Complex somatic symptom disorder" must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above."


    "One major problem for reforming the classification relates to the fact that the DSM system includes only "mental" disorders whereas what we have described above is the necessity of not trying to force these disorders into either a "mental" or "physical" classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.

    The solution of "interface disorders", suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the "physical" classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely [13]."


    ME agenda Note:

    DSM-V Task Force member, Javier Escobar, MD, who works closely with the DSM-V Somatic Distress Disorders Work Group, has alleged that "Functional Somatic Syndromes" (FSS), or "Medically Unexplained Symptoms" include a long list of medical conditions:

    "Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome" [1]

    Unexplained Physical Symptoms What's a Psychiatrist to Do?

    Humberto Marin, MD and Javier I. Escobar, MD
    01 August 2008, Psychiatric Times. Vol. 25 No. 9

    Special Report
  10. valia

    valia Senior Member



    The 3rd video stars Simon Wessely's wife as the GP helping ME patients.

    She is also a psychiatrist and I believe an Adviser to the UK Department of Health.

    How's that for a cozy set up?
  11. alice1

    alice1 Senior Member

    All this info is too overwhelming and depressing for me to read through and yes it is a very cosy set-up with funding in there I'm sure.
    At least my family Doc and psychiatrist believe that I have a phyical problem and are willing to give me meds to help get by.I had 2 cancers and my oncologists don't believe this is from a surpressed immune(how insane is that) but I did have an Immunologist tell me the ME more than likely brought on the Lymphoma and he was going to connect me to all kinds of specialists.Haven't heard a word from him.
    I pray this new virus finding will lead to certain cocktails that will help.I've decided to go see an HIV Doc as they know about all the meds and many viruses.
    The one saving grace is the American Pharmaceuticals are so greedy they're all over the the Whitmore Institute wanting to be apart of the trials.Lots of $$ to be had.
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    Yes she is an adviser and trained as a psychiatrist:

    Dr Gerada is a registered Medical Practitioner with an understanding of and experience in the provision of general practice, mental health and addiction services. She undertook her psychiatric training at the Maudsley and Bethlam Hospitals, 1986 – 1990. Since 1991 Dr Gerada has worked as a Principal in General Practice though has maintained her interest and expertise in the addiction field. Dr Gerada writes, teaches and lectures widely on the subject of the role of general practitioners in the care of substance misusers. Since 1993 Dr Gerada has been the lead clinician for the Consultancy Liaison Addiction Service which provides support to general practitioners such that they are able to deliver effective care to drug users.

    Dr Gerada has held a number of national roles, including, Senior Policy Advisor Department of Health, Drugs and Alcohol. Director of RCGP Substance Misuse Use Unit & Chair of RCGP National Expert Group on Substance Misuse. In both of these roles, Dr Gerada provided national leadership in substance misuse, developing the RCGP Certificate in Substance Misuse and supporting the creation of shared care working across England. Director Primary Care, National Clinical Governance Support Team, 2003-2006: responsible in part for developing Governments’ response to the Shipman Inquiry. Vice Chair RCGP 2007 – 2010
  13. JayS

    JayS Senior Member


    This does sound sadly typical. Does anyone know of a link to info on this? I would like to read more about it if there's something out there but I'm not quite sure how I would go about searching for it! Thanks.
  14. My pleasure.

    I do nearly have a mental break down every time I make these infuriating
    videos - but unless I do, no one will know the problems we face.

    Somehow I've had 200,000 video views in total, which is quite hillarious
    for someone who lives on a bed/sofa and never goes out or sees a human.

    I think I'm very lucky to have the internet, and of course Cort's website
    where I can converse with you all. :)

    This one was especially difficult to make as you have write down every horrible
    word with expert precision.

    Lastly note this one has been blocked by youtube in 'some countries'
    (it says on my account). Err why? Talk about lack of free speech - it's simply
    a copy and paste of a paper in the Nursing Journal and youtube effectively block
    it!!!!! <<See attachment>>

    Attached Files:

  15. Frank

    Frank Senior Member


    I mailed you with the question that you could sent me the videos to let me put some dutch subtitles on them?
    So i can spread this thing further.

    Is that ok?

    You deliver great work!

  16. bananaman


    Bognor UK
    The tragic story of Ean Proctor abused as the hands of Simon Wessely, His crime being

    Youtube ME Documentary "ME Still Not Taken Seriously" featuring an Ean Proctor interview about his cruel mistreatment at the hands of Simon Wessely "2mins 40secs in"
  17. Min

    Min Guest

    That video is absolutely heartbreaking.

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