Marco
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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
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:
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
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