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Is the UK Govt in breach of obligations to WHO?

Discussion in 'Action Alerts and Advocacy' started by Marco, Jan 8, 2010.

  1. Marco

    Marco Old blackguard

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    Apologies for the length of this post but it helps me to set it all out like this. My comments are in italics.

    I was re-acquainting myself with the Canadian Consensus document when this discussion caught my attention :

    1. Extract from the Canadian Consensus Document

    Classification
    ME/CFS is an acquired organic, pathophysiological,
    multi-systemic illness that occurs in both sporadic
    and epidemic forms. Myalgic Encephalomyelitis
    (ICD 10 G93.3), which includes CFS, is classified as
    a neurological disease in the World Health
    Organizations International Classification of
    Diseases (ICD)
    . Chronic fatigue must not be
    confused with ME/CFS because the fatigue of
    ME/CFS represents pathophysiological exhaustion
    and is only one of many symptoms. Compelling
    research evidence of physiological and biochemical
    abnormalities identifies ME/CFS as a distinct,
    biological, clinical disorder.


    Somatoform Disorder: There is some
    symptom overlap between somatoform
    disorders and ME/CFS. However, somatoform
    disorder patients often have a long history of
    complaints starting before thirty years of age.
    In order to diagnose any type of somatoform
    disorder, the symptoms cannot be fully
    explained by any demonstrable general medical
    condition, by the direct effects of a substance,
    or by another mental disorder. Many objective
    biophysiological findings have been
    demonstrated to underlie the symptoms of
    ME/CFS. Patients meeting the criteria of
    ME/CFS must be excluded from the diagnosis of
    Somatoform Disorder. Member countries of the
    World Health Organization (WHO) are obliged
    to adhere to the regulations of the WHOs
    International Classification of Diseases (ICD)
    and use their ICD classification.
    In a letter
    dated January 23, 2004, Andre lHours of WHO
    headquarters clarified that it is not permitted
    for the same condition to be classified to more
    than one rubic as this would mean that the
    individual categories and subcategories were no
    longer mutually exclusive. Thus, ME (and
    CFS), classified as a neurological disease
    in the WHO ICD, cannot also be classified
    as somatoform disorder, which is
    classified as a mental or behaviour
    disorder.


    The UK is a WHO member country and therefore is obliged to treat anyone diagnosed with ME/CFS as suffering from a neurological disease. This prohibits any other diagnosis (and presumably treatment) which assumes a cause of somatoform disorder.

    2. Extract from the UK NICE Guidance

    1.2.2.7 Serological testing should not be carried out unless the history is
    indicative of an infection. Depending on the history, tests for the following
    infections may be appropriate:
    chronic bacterial infections, such as borreliosis
    chronic viral infections, such as HIV or hepatitis B or C
    acute viral infections, such as infectious mononucleosis (use heterophile
    antibody tests)
    latent infections, such as toxoplasmosis, EpsteinBarr virus or
    cytomegalovirus.

    Odd given the WHO definition that the NICE guidelines should specifically discourage any serological testing (and also for example tilt table testing!). Regardless, it does have the effect of hampering further UK research relying on stored blood samples.

    3. Extract from MANCHESTER NHS TRUST website (derived from NICE guidance)What is CFS/ME (extract)

    Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy) (CFS/ME) is a relatively common illness which can cause profound, often prolonged illness and disability. It can have a substantial impact on a person and their family, and the physical symptoms can be as disabling as multiple sclerosis, rheumatoid arthritis and other chronic conditions.

    Or to put it another way MS, rheumatoid arthritis and other chronic conditions can be as disabling as ME?

    DIAGNOSIS (extract)

    General Exclusions
    Established medical disorders which cause fatigue
    Major depressive illness with psychotic features (but not anxiety states, somatisation disorder or non-psychotic depression)
    Any medication that causes fatigue as a side-effect
    Eating disorders, anorexia, bulimia or severe obesity (BMI>=45)
    Alcohol or other substance abuse within 2 years before the onset of chronic fatigue or at any time afterwards

    So according to NICE, a diagnosis of somatisation does not preclude a diagnosis of ME/CFS? Is this compatible with the WHO requirements or are they saying they may be co-morbid? How would one decide which symptoms are the result of a serious neurological illness and which are 'imagined'?

    TREATMENTS

    Management

    All patients are assessed individually and management is offered either as individually sessions or as group management courses. The overall management approach involves Graded Activity, Graded Exercise and Cognitive Behavioural Therapy. This is done in partnership with the patient, at a rate which is appropriate for the patients severity.

    Individual management will be an agreed number of sessions with the CFS/ME team either in the clinic, or as a domiciliary visit for those who are housebound or bedridden.

    CFS/ME management courses are offered by the local CFS/ME multidisciplinary teams. Local courses vary slightly, but generally last for approximately 2-3 hours over a 6-8 week period.

    Referral to other services may also be required for additional assessment, symptom control or further support and advice. This could include:
    Referral to the CFS/ME specialist clinic
    Referral to specialist consultants
    GP appointments
    Referral to CFS/ME physiotherapist, occupational therapist or psychological therapist
    Referral for benefits advice
    Referral for additional help from the primary care team
    Social services for additional care support

    Recommended Treatments
    • Activity and Exercise
    • CBT
    • Complementary approaches
    • Relaxation techniques
    • Symptomatic control

    Note : while the NICE guidelines talk about the need for pacing and the possibility of relapses, the activity described above assumes an ongoing increase in activity with no provision for reduction.

    OK. I can appreciate that, until a definite organic causal agent is identified along with suitable therapies, then all that can be offered are palliative treatments or interventions aimed at helping people to cope with their illness. This would be still consistent with the defintion of ME/CFS as a neurological illness but this interpretation is not supported by the NHS' own descriptions of the origins and rationale behind CBT.


    4. Extract from NHS CHOICES website

    Cognitive behavioural therapy (CBT) is*the term*for a number of therapies that are designed to help solve problems in people's lives, such as anxiety, depression, post-traumatic stress disorder (PTSD) or drug misuse.

    CBT*was developed from*two earlier types of psychotherapy:

    • Cognitive therapy, designed to change people's thoughts, beliefs, attitudes and expectations.
    • Behavioural therapy (also called behaviourism, designed to change how people acted.

    American psychotherapist Aaron Beck helped to develop CBT and believed that the way we think about a situation affects how we act. In turn, our actions can affect how we think and feel. It is therefore necessary to change both the act of thinking (cognition) and behaviour at the same time. This is known as cognitive behavioural therapy.

    Solving problems using CBT

    CBT says that your problems are often created by you. It is not the situation itself that is making you unhappy, but how you think about it and how you react to*it.

    An example of how CBT can be used to solve problems is described in the following scenario.

    Scenario

    A woman believes that her manager secretly dislikes her and is trying to undermine her job. This makes her anxious and depressed at work, so she begins to make some mistakes.

    When her manager points out her mistakes, and suggests ways that she can avoid making them again, it reinforces her belief that her manager dislikes her. As she's convinced she's going to be fired, her performance drops even further. Finally, her manager loses patience with her performance*and does fire her.

    Applying CBT

    A CBT therapist would attempt to break this downward cycle of thinking by challenging the woman's negative and unhelpful thoughts. Then the therapist would try to get her to base her behaviour on more realistic thoughts and assumptions.
    The CBT therapist may point out that*the manager is unlikely*to undermine an employee because it's in the manager's interest to have productive and motivated staff. Instead of seeing*the manager's suggestions as a personal attack, it would be more helpful for the woman to see*them as support and encouragement.

    The therapist and the woman would then talk about how she could act in the future based on these more realistic beliefs, such as asking for feedback about how she could improve and*training to learn new skills.

    The outcome

    After several weeks of trying these new thinking and behavioural techniques, the woman's manager sees an improvement in her attitude and performance, and their relationship continues to improve. After several months, the manager recommends the woman for a promotion.*

    I know the psycholobby like to 'sex up' their results but a promotion in the same firm a few months after being sacked is pretty remarkable even for CBT!

    6. Description of CBT from NICE Guidelines on ME/CFS

    Cognitive behavioural therapy (CBT)

    l A course of CBT should be delivered:
    by a healthcare professional with appropriate training in CBT and experience in CFS/ME, under
    clinical supervision, and with close adherence to protocols
    one-to-one if possible.
    l Plan CBT for a person with CFS/ME according to the usual principles of CBT, and include:
    Acknowledging and validating the persons symptoms and condition.
    Explaining the CBT approach in CFS/ME, such as the relationship between thoughts, feelings, behaviours and symptoms, and the distinction between causal and perpetuating factors.
    Discussing the persons attitudes and expectations.
    Developing a supportive and collaborative therapeutic relationship.
    Developing a shared formulation and understanding of factors that affect CFS/ME symptoms.
    Agreeing therapeutic goals.
    Tailoring treatment to the persons needs and level of functioning.
    Recording and analysing patterns of activity and rest, and thoughts, feelings and behaviours (self-monitoring).
    Establishing a stable and maintainable activity level (baseline) followed by a gradual and mutually agreed increase in activity.
    Challenging thoughts and expectations that may affect symptom improvement and outcomes.
    Addressing complex adjustment to diagnosis and acceptance of current functional limitations.
    Developing awareness of thoughts, expectations or beliefs and defining fatigue-related cognitions and behaviour.
    Identifying perpetuating factors that may maintain or exacerbate CFS/ME symptoms to increase the persons self-efficacy (sense of control over symptoms).
    Addressing any over-vigilance to symptoms and related checking or reassurance-seeking behaviours by providing physiological explanations of symptoms and using refocusing/distraction techniques.
    Problem solving using activity management and homework tasks to test out alternative thoughts or beliefs, such as undertaking pleasure and mastery tasks (tasks that are enjoyable and give a sense of accomplishment).
    Building on existing assertion and communication skills to set appropriate limits on activity.
    Managing sleep problems, for example by addressing any unhelpful beliefs about sleep, behavioural approaches to sleep disturbance, stress management, and/or relaxation training (see page 11).
    Treating any associated or comorbid anxiety, depression or mood disorder according to NICE clinical guidelines on these conditions (see page 23).
    Offering information on managing setbacks/relapses (see page 15).

    Clearly this is about more than palliative or coping treatment. It assumes that the patients symptoms are in part if not wholly caused by thoughts/beliefs that is a somatoform disorder clearly in breach of the UK's obligations as a member of WHO.

    PS : If you recall this statement : It can have a substantial impact on a person and their family, and the physical symptoms can be as disabling as multiple sclerosis, rheumatoid arthritis and other chronic conditions.

    Presumably this disablement refers to those with multiple sclerosis, rheumatoid arthritis etc currently being treated with the appropriate medications. Therefore one would expect the NHS to offer these people the same range of palliative/coping treatments offered to those with ME/CFS?

    I have searched the on-line NHS material extensively and can find no trace of CBT or GET as a recommended treatment for MS or rheumatoid arthritis.


    And why would UK govt promote this guff?

    The government last month took its first step on realising a plan for the NHS to employ more counsellors and therapists by launching two pilot cognitive behavioural therapy (CBT) centres for people with depression and anxiety in Doncaster, Yorkshire, and Newham, London.

    Health economist Lord Richard Layard, credited with providing the idea behind the initiative, is the lead author of a new report on depression which states that 5,000 extra clinical psychologist could be brought into the NHS if the current intake of 550 yearly trainees was expanded temporarily to 800. Other psychologists could be recruited from outside the NHS.

    The government's eagerness to follow Lord Layard's advice is largely driven by a desire to slash incapacity benefit payments by finding ways for the 1.3 million people with a mental health problem who claim such benefits to return to work.
    Source : Psycminded.co.uk
     
  2. fresh_eyes

    fresh_eyes happy to be here

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    Hi Marco. I don't have the brainpower to read your whole post right now, but wanted to say that I do believe the UK Govt. is failing to live up to its WHO obligations, and is violating the human rights of a significant number of its citizens. I think this is an excellent angle to pursue.
     
  3. Marco

    Marco Old blackguard

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    Hi Fresh eyes!

    I was hoping to stimulate some debate on this.

    I appreciate that there is a lot of info on here but if you just read my italicised comments and then refer to the preceeding paragraphs if you want to evaluate my interpretation of the official text.

    Basically what I'm saying is that, while the UK authorities make all the right noises that ME/CFS is a serious illness etc their official published material clearly suggests that it is considered, in part or wholly, as a somatoform disorder and treated accordingly. Protestations that CBTand GET are offered as paliative/coping therapies is not supported by their own documentation on the rationale for the treatments and application of exercise with the goal on only increasing activity (sic). Not to mention that the same 'treatments' are not offered for similarly disabling chronic illnesses.

    My contention is that this is in breach of the WHO's definition of ME/CFS and clear statement that no other diagnosis may be considered once a diagnosis of ME/CFS is made.

    This being the case, could a patient whose health deteriorates as a result of CBT or GET sue the NHS for inappropriate treatment or malpractice?
     
  4. froufox

    froufox Senior Member

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    Hi Marco,

    Thanks for posting this I agree I think its a great angle to pursue. In relation to this I just wanted to post a letter from Ann Keen MP that was forwarded on to me from my MP after he wrote to the Secretary of State for Health Andy Burnham MP . I wrote to my MP using this template letter regarding the situation with XMRV back in November when we had just heard the news about XMRV and he forwarded my letter on to Andy Burnham and Ann Keen replied. The reply was in December, before the recent UK XMRV study and I received it a few days ago. It can be reposted publicly as ministerial replies are regarded as official policy.

    Anyway she refers to the WHO definition but I dont know what she means by all aetiologies being investigated??! And she also says no one form of treatment to suit every patient - no there are 2 forms of treatment that are expected to suit most of us instead :rolleyes: Also its very disingenuous for her to talk about a holistic approach and how other illnesses like cancer have psychological supportive therapies. Anyway its just a fob off cloaked in ministerial speak. I havent replied to the letter yet but I will do when I have some energy.

    Dear Nick,

    Thank you for your letter of 24 November to Andy Burnham enclosing correspondence from your constituent Ms **** about xenotropic murine leukemia virus-related virus and chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

    Whilst the Department of Health agrees with the World Health Organization's classification of CFS/ME as a neurological condition is of unknown cause, there are many different potential aetiologies for CFS/ME, including causes of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms can not yet be fully explained. What is important is that CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition. That is why research breakthroughs such as the one outlined in Ms ****'s letter, are so important to developing the knowledge base, which we hope will lead to the development of new treatments.

    The purpose of statutory notification of cases of specified infectious diseases by attending doctors to the proper officer of the local authority is to enable prompt investigation and action usually by health protection units or environmental health departments to prevent further spread of infection. There are separate mechanisms for protecting the microbiological safety of of the blood supply, including deferral of donors who may pose a risk of infection and testing of donors for specified bloodborne infections. Currently, individuals suffering from CFS/ME are deferred from blood donation until their condition has resolved and they are feeling completely well.

    I can reassure Ms **** that the UK Blood Services are aware of these findings and are reviewing their risk assessment in the light of them.

    The National Institute for Health and Clinical Excellence (NICE) clinical guidelines are updated as needed so that recommendations take into account important newe evidence. However, as I hope Ms **** will appreciate, as NICE is an independent body, the time-frame for revising guidance and the evidence it uses are matters entirely for NICE. Ms **** may wish to raise this issue directly with NICE's Chief Executive, Andrew Dillon, at the following address:

    NICE
    MIdCity Place
    71 High Holborn
    London WC1V 6NA

    I think it also helpful to emphasise that NICE clinical guidelines are just that - guidelines for healthcare professionals to use in conjunction with their clinical judgement and based on individual assessment of each patient's needs.The guideline recognises that there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want.

    The guideline emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

    Cognitive behavioural therapy is a rehabilitative approach designed to modify the way patients think and behave about their illness and so improve physical symptoms. In common with other illnesses and conditions where it has been successfully used such as chronic pain, cancer, heart disease and diabetes, its use does not imply that the cause of the illness is psychological
    I also feel that it is not helpful to differentiate between biomedical and psychosocial treatments as, based on clinical evidence that is currently available, patients are best served by a holistic approach.

    Ms **** also asks about proposals for biomedical research. I know that many of our stakeholders see biomedical research as the key to developing new treatments and I do appreciate her concerns about a lack of biomedical research in this area. As you may know, the main agency through which the Government supports medical and clinical research is the Medical Research Council (MRC). The MRC is wholly independent in its choice of which research to support and it does not generally earmark funds for particular topics. It maintains a rigorous decision making process and only funds research that is likely to make a significant contribution to knowledge and is a good use of taxpayers' money. Decisions to support proposals are taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base.. There is certainly no bias, and I know that the MRC remains committed to funding scientific research into all aspects of CFS/ME.

    I understand that the MRC continues to attract a small number of proposals for biomedical research. The problem is that there appears to be a shortage of good and innovative ideas within the scientific community itself. This is something I know that the CFS/ME community and the MRC are aware of, and the MRC has endeavoured to address this by engaging with patient groups to encourage high quality research into CFS/ME, and it is difficult to see what more the MRC could do without lowering the quality threshold.

    Finally, the Government is not responsible for testing genetic conditions or educating medical professionals, which are the responsibility of the NHS and the Royal Colleges respectively.

    Ann Keen MP
    Parliamentary Under Secretary of State
     
  5. Really, there are no obligations because a Governments business is it's own, and thus it can ignore outside influence, morals, and codes of ethics - as they write their own ethics.

    UK Government can openly state (as it does in the British House of Lords) that ME is a neurological disease, but this is where it ends. When it suits them, for example on the WHO advice on Swine Flu or contraception - then it can brag and boast it follows advice of the WHO.

    When it doesn't suit them, then WHO advice or guidenlines or classification or knowledge can be ignored. Nowhere on the Department of Health's website does it mention World Health Organisation descriptions of benign myalgic encephalomyelitits (ME). Which says it all. If the 'treatment' package is CBT/GE/Anti Depressants and counselling then this is not compatible with the treatment package of a post or persistant viral neurological condition. So the UK Government are indeed in breach of their obligations - but this process is simply political will.

    To treat ME (called 'CFS' by Psychiatrists) as a neurological diease entity would require huge funding, training, new clinics in hospitals and education in schools/universities. Short of being caught out with a 'bombshell' like XMRV, this is never going to happen. Just continue to state that ME is now CFS (which is not), and that CFS is treatable with psychological management packages.

    Money can be saved by not treating 250,000 people in the UK, and then spent on war and paying for advertising in the NHS to tell people to stop smoking and drinking and for paying terrorists legal aid to prevent themselves being deported. Money can be saved by not treating another disease affecting one's neurology (Autism) that affects at least 500,000 children in the UK. Get close to 1 million people all requiring answers to how they were infected/brain damaged and things are going to get hot.

    As we all know, this is down to cost and socialised medical care. UK ME patients have no choice 'but' state health care, which is why the corruption is so bad. They know, we know. They know we are powerless to act, because there is no alternative but to accept psychiatric theory and treatment of a non psychiatric disease because private health insurance does not occur in the UK for chronic disease, and there are no private ER rooms (A&E) where ME patients could be 'discovered' by medicine. State hospital, or nothing. If ER rooms say don't send ME patients for cardio respriatory tests, then they don't. If there were PRIVATE ER (A&E) centres the patients with ME would be sent off for further testing, and it would be common knowledge ME affects the cardio respriatory system. Yet it's not, due to state health care controlling medicine and emergency medicine in the UK.

    This level of corruption is only possible in a state run health system, and only possible without a diagnostic test for ME.

    XMRV changes everything, and the WHO ruling (being ignored by the UK Government) will be irrelevent the day you test positive for XMRV. When you test positive you have an infectious disease, and not WHO Myalgic Encephalomyelitis, and not CFS Chronic Fatigue Syndrome either. You become part of the medical community and not a leper or even a 'leaper'....
     
  6. fresh_eyes

    fresh_eyes happy to be here

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    Technically speaking, DysautonomiaXMRV (hi and welcome, by the way!) this just isn't so. WHO member states do have certain obligations. One of these is to address and control infectious diseases within their borders, to stop epidemics. Apart from the misguided treatments you lay out, Marco, a much simpler objection is that the UK Govt is failing to make a good-faith effort to find out whether XMRV is prevalent in the UK, and from there whether it causes disease. This puny study doesn't reflect a good-faith effort IMO. (BTW, I'm American.)
     
  7. Marco

    Marco Old blackguard

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    Hi DysautonomiaXMRV.

    I can't disagree with your analysis of how things work in practice.

    Personally I don't believe a breach of the WHO definition, even if legally enforcable and punishable, would make much difference to UK govt policy. These little tiffs are easily sorted out on the QT at official level.

    BUT. The value of the WHO defininition is that it is a recognised international authority. Its one thing the ME community and its advocates having an opinion on these issues - we are easily ignored or vilified. But the opinion of the world's premier health watchdog is another matter.

    Even better when the UK authorities publish material which clearly shows that they are treating this illness as a psychological illness and the letter posted by Froufox (which as he says must be treated as official government policy) which appears to conflate ME with chronic fatigue states with a psychological etiology. We can start picking this apart.

    Well - so what? One thing governments of all hues fear is negative publicity and a scandal. If even one reputable and popular newspaper/magazine/TV production company could be persuaded that the UK government has over many years :

    Ignored the WHO definition of ME and allowed a powerful psychiatric lobby (with links to health insurance providers) to promulgate a spurious basket case definition to include those with fatigue as a symptom due to pyschological problems;
    Ignored the testimony of patients and more importantly many robust findings of physiological damage in ME patients;
    Skewed research funding and reporting to marginalise studies on organic causes and effects and boost the psychosocial model;
    and on the basis of trumped up results pushed ME patients into psychologcal treatments which have no 'evidence base';
    Not to mention willfully ignoring the potental exposure of the whole population to a potentially fatal retrovirus;
    and all apparently because cost benefit analyses carried out for NICE demonstrated how cheap these 'treatments' were in comparison to real treatments.

    We could all go on. But as a story, doesn't this beat MPs expenses?
     
  8. Tom

    Tom windows exterminator

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    There's a general election this year and some amnunition was delivered yesterday in Scotland and probably more in the days to come. This would be an ideal time to see if "we" could be turned into an election issue . Doing so , or even just trying to do shouid help raise awareness in the general public. Afterall "it could be you next".
     
  9. Marco

    Marco Old blackguard

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    Hi Tom

    Perhaps the devolved governments are the place to stir things up as they don't have the Westminster bias to cover things up. Not sure what you are referring to re "some ammunition delivered yesterday in Scotland"?
     
  10. Countrygirl

    Countrygirl Senior Member

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    Hello Marco,

    Pardon me for butting in - but in case Tom isn't on-line - he is referring to Joy's positive XMRV result. So, XMRV is in the U.K. Do go and visit the thread J. started last evening.
     
  11. Tom

    Tom windows exterminator

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    You got it countrygirl and from the thread it looks as tho' there will be a few more xmrv's shortly .
    re marco stirring up devolved governments . This could be another stick for the Wesh, Irish and Scots to beat the English with. Yeah, could get really interesting.

    Been out collecting PC's inneed of resussetation or help.
     

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