Monday, February 07, 2005
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
STATEMENT FROM THE YOUNG ME SUFFERERS TRUST
EVIDENCE BASED GUIDELINE FOR THE MANAGEMENT OF CFS/ME IN CHILDREN AND YOUNG PEOPLE : published by the Royal College of Paediatrics and Child Health
The Trust has engaged strongly in the consultative process for Stakeholders during the writing of this guideline. Our representations achieved 21 separate changes in wording together with a number of amplifications of information.
Having read the published guideline carefully, it is our opinion that, on balance, children with ME are more likely to be taken seriously and there is the potential for giving them more help with their education. Although we applaud the great effort that has been made by the Royal College and all those involved in the production of the guideline, we nevertheless do have a number of serious reservations and concerns.
The "Executive Summary and Guideline Recommendations" are likely to be what most doctors read. Many recommendations should effect an improvement for children with CFS/ME, but the recommendations on CBT and GET are very likely to prove problematic for young patients and their families.
In theory, the Recommendation that "Children and young people with CFS/ME should be considered for graded exercise or activity programmes..." just means that these therapies should be considered. In practice, it could well produce a knee-jerk referral despite the detailed discussion in the full document.
Under "Making the Diagnosis", it is worth flagging up that the guideline helpfully advises: "..unless there are immediate concerns regarding the psychological wellbeing of the patient, a detailed exploration of family dynamics or the taking of a full psychiatric/psychological history is not necessary at this point."
Nevertheless, regarding school, "poor attendance" has (even after changes to the text were made as requested) still been referred to as a psychological symptom. Absence from school may therefore continue to be misinterpreted.
This is despite helpful references to the term "Special Educational Needs" inserted into the guideline at the recommendation of the Trust's Executive Director Jane Colby FRSA, who was, in her own right, part of the Delphi Panel of experts consulted by the College before the Stakeholders consultation began.
Some months prior to the Delphi consultation, Jane also alerted the Principal Research Officer at the Royal College to the statutory guidance from the Dept for Education and Skills entitled "Access to Education for Children and Young People with Medical Needs" and explained how it would affect doctors using the new guideline. This phrase was brought into the guideline and Jane's recommendations for virtual education as a possibility for some young people with ME have also been included.
In the reference section, the Dowsett/Colby study of long-term sickness absence in schoolchildren has been included, along with two other Colby references concerning education for children with ME.
However, the guideline concerns "any child/young person up to the age of 18 referred to a paediatrician for assessment with debilitating fatigue." Although this should help to avoid cases being missed, it could also lead to incorrect labelling and this in turn could lead to the apparent success of therapies such as CBT and GET being further misinterpreted.
The responsibility on the paediatrician, as always, will be to diagnose correctly within the spectrum of conditions where debilitating "fatigue" is a symptom. Here the Clinical Algorithm (a flow-chart for management of CFS/ME) concerns us.
This flow-chart displays a box advising that where investigations are abnormal, the condition is not CFS/ME. It displays another box advising that if all results are normal, it is likely to be CFS/ME. But whether this advice is correct or not depends on the tests used. New tests are already beginning to overtake this advice - tests that are not discussed in the guideline despite our drawing attention to them.
If a doctor uses a modern test where available, such as a rapid PCR for the identification of enteroviruses, and gets a positive result, will the doctor then think he is not seeing CFS/ME? We are of the opinion that this algorithm should receive attention in the near future.
*Why have certain statements been made?*
This guideline is "evidence based". Depending on what evidence is used for reference, the result will reflect that evidence. Randomised Controlled Trials are considered more reliable evidence than, for example, empiral evidence given by patients describing their experiences.
Yet RCTs often depend, in their analysis, on patients describing their experiences! They have often not included the experiences of the people who dropped out, thus both skewing the results and disempowering these patients at a stroke.
In the Trust's publication VISION, now available online at www.tymestrust.org
Linda Haines, Principal Research Officer at the Royal College said: "We hope that the guideline will lead to improved care for all children with this debilitating illness." But what illness? The difficulty posed by the broad spectrum covered by CFS (admitted to be a heterogenous condition) means that treatments cannot be and are not suitable for everyone caught under this label.
Partly as a result of recommendations by the Trust and others, the guideline does emphasise that treatments must be suitable for the individual child and that there are dangers in extrapolating from studies on other patient groups. But, in our view, it does not do so stringently enough to avoid potential pitfalls where paediatricians are insufficiently aware of the deterioration that can follow inappropriate physiotherapy and rehabilitation programmes.
In a piece specially commissioned by the Trust for VISION, Linda Haines wrote: "The guideline has been written by a group of experts who have a lot of experience of looking after young people with CFS/ME, after considering all the available research evidence."
But what is considered "research evidence"? One example of this problem came when the Trust requested that:
"A warning should be given about the potential for harm that over-zealous physiotherapy or occupational therapy can cause" but we were told: "we were unable to include this suggestion as we had no evidence on which to base such a statement."
Young people with ME do not need an RCT to know that if they place their hand on a hotplate, they get burned. Had young people and their carers been given enough opportuniity to report their experiences of physiotherapy and occupational therapy?
To state, as the Executive Summary does, that "there is no evidence for the efficacy or otherwise of pacing as an effective management strategy for children and young people with CFS/ME" is to ignore evidence from patient surveys which include people of all ages and form evidence of vital importance.
Evidence of the damage that can be caused by exercise had been offered to the group writing the guideline but this offer was not taken up. In addition, there are very experienced clinicians who can describe precisely what happens to a child with ME given over-zealous physiotherapy (temporary paralysis being just one of the effects). Sadly, one of these great clinicians is no longer alive, and others who may have made representations have perhaps had their evidence relegated to a lower level.
We are all - writers, advisers and consumers of this guideline - prisoners of the "evidence-based" dogma. As a result, the Trust's warning was not -indeed, could not be - included.
*Was sufficient time allocated for consulation?*
The guideline, finally launched on Thursday 3 February 2005 at Westminster, began overrunning its original timetable early on in the process, but the College nevertheless decided to publish almost on time. This meant the contraction of the consultative process.
We advised that the timetable be allowed to slip so that the Delphi and Stakeholder consultative processes could be given the originally allotted span of time. This was not done. We feel this is regrettable.Quality is more important than time in a matter of such importance.
*Doctor Still Knows Best?*
Sadly, there is a gulf between the kind of language that we advised and the language that has been used.
There should be an expectation on paediatrians to explain to young patients and their families that because there is no cure as such, they are free to make their own choice how to manage their illness from a number of suggestions which would be offered, or indeed, to manage it in their own way.
The language of this guideline still takes the traditional Doctor/Patient angle: "Doctor knows best." A great opportunity for a break with tradition has been missed. It would have detracted nothing from the content and would have added much. It would have helped paediatricians to engage with families, whereas only the reverse is being advised.
So, on hospital admission the recommendation reads: "The majority of children and young people with CFS/ME will not need hospital admission. However, there may be some circumstances where an admission is helpful such as, for example, for assessment or the initiation of a management plan when the expertise is not available on an outpatient basis."
Let us look at the language of this sentence: "when the expertise is not available on an outpatient basis."
Unless the parents are completely unable to look after their child, as sometimes happens in very severe cases, how is it that "expertise" can possibly be considered to be unavailable on an outpatient basis?
The expertise of the parents/carers has been completely discounted without the writer even being aware that this has been done. Such a mindset must be challenged by patient groups until doctors truly appreciate the deficiencies of this approach.
The guideline does recommend the involvement of the family at all stages of the management of this illness.
But the parent and the child are usually the experts on what the child can manage, given, as it must be repeated, that nothing is going to be curative and that the body must be supported while it heals.
The Young ME Sufferers Trust
PO Box 4347, Stock, Ingatestone, Essex, CM4 9TE
Tel/Fax : 01245 401080 www.tymestrust.org
END OF STATEMENT
Posted at 7.2.05 by fnqsupport
Thursday, January 27, 2005
PSYCHIATRIC PARADIGM OF ME / CFS
A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS
By Angela Kennedy
18 January 2005
This document provides a brief, critical overview of identified themes within the approaches to ME/CFS, that have been promoted extensively by a vociferous group of doctors and others known colloquially as the ‘Wessely School‘, after Simon Wessely, a psychiatrist who has had a key role in facilitating the emergence of the notion that ME/CFS is a psychological disorder (Hansard, cited in Marshall et al, 2001).
Unfortunately for ME/CFS sufferers themselves, the ideas espoused by this group have been accepted uncritically by many others, even though there are fundamental theoretical, methodological and ethical problems with their approach, which have caused endangerment and disenfranchisement to ME/CFS sufferers worldwide, as well as further, unnecessary, suffering.
Their approach, theoretical assumptions and apparent beliefs, as delineated below, I have termed the ‘psychiatric paradigm’. This is not meant to imply that all psychiatrists, psychologists and other mental health professionals subscribe to a ’psychiatric paradigm’ of ME/CFS, as proposed by the ‘Wessely School‘. As will be demonstrated, some psychiatrists have critiqued the notions espoused by the ‘Wessely School’. Dutton (1992), has used the word ‘paradigm’ in connection with depression/somatization explanations for ‘CFS’. I am therefore using the term ‘psychiatric paradigm’ to describe the psychiatric causation explanations for the disease ME/CFS, espoused by those such as Simon Wessely, and various others.
The main problems of the Psychiatric Paradigm can be summarised as follows:
1. Refusal to recognise ME/CFS as a neurological illness
Proponents of the psychiatric paradigm do not appear to subscribe to the WHO ICD-10 classification of Myalgic Encephalomyelitis/chronic Fatigue Syndrome as a neurological disease (for example, see David and Wessely, 1993). This is further illustrated, for example by Wessely’s own comment (1994), that: “I will argue that ME is simply a belief, the belief that one has an illness called ME”.
Another example of this position was illustrated, for example, when proponents of the psychiatric paradigm unilaterally (and incorrectly) represented the term Chronic Fatigue Syndrome as being classified as a mental disorder in the ICD-10, and advised the British government that this mis-classification was in order, until the British Government was corrected by the Countess of Mar during a House of Lords debate in 2004, with confirmation by the World Health Organisation. (Footnote 1)
The refusal to recognise that ME/CFS is a neurological illness is in direct contradiction to a very large body of international research/clinical literature illustrating the neurological and other physiological evidence as to the organic basis of this disease. (Footnote 2) Such literature, especially where it prevents a fundamental challenge to the psychiatric paradigm, has been consistently ignored in the Wessely’s School’s own literature, and frequent quoting of the work of the prime proponents of the psychiatric paradigm instead occurs regularly within this literature (for example, as discussed in Marshall et al, 2001. Also see discussion surrounding the continuing failure to engage with the Canadian Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Case Definition and Treatment Protocols (Carruthers 2003), for example, in Kennedy and Bryant, 2004).
2. Confused, Inconsistent Notions of ‘Psychosomatic’ Illness
Instead of accepting either the WHO’s neurological classification, or the evidence of organic disease presented by the international research and clinical literature, proponents of the psychiatric paradigm continue to assert the notion that the ‘illness’ is caused and/or perpetuated by ‘psychological’ or ‘behavioural’ factors. This idea manifests itself in a number of ways, often used interchangeably and confusingly, where various discursive categories of ‘psychosomatic’ illness are assigned to ME/CFS sufferers within the literature supporting the psychiatric paradigm, implying that various mental, behavioural, or emotional processes, not organic processes of disease in the body, are the causes of their ill health. In this context, ME/CFS sufferers are often constructed as the authors of their own misfortune (McWhinnie et al, 1997), seen as either a conscious or unconscious process (Kennedy, 2004 (a)). Such categories identified in the literature of the psychiatric paradigm include:
Imaginary (the illness or symptoms are deemed not ‘real’, but imagined);
Malingering (the ‘sufferer’ is implied as lying about the extent or even the existence of their illness, in order to receive financial or other benefits, including social or familial attention. Sometimes this can be implied to be occurring on an ‘unconscious’ level, i.e. ‘lying to one’s self’);
Hypochondria (the ‘sufferer’ is deemed to have odd or ‘aberrant’ or ‘irrational’ illness beliefs, for example, believing they need to rest, when they ‘should’ be exercising, even though exertion has serious adverse implications for ME/CFS sufferers, and the idea that such concerns are ’irrational’ are highly subjective and contested, as described in Kennedy 2004 (b);
Personality disorders, often interspersed with notions of ‘character flaw’.
• Functional (a disturbance of the function of an organ mediated by emotional tension);
• Structural (a physical structure disturbance mediated by emotional tension).
The last two Categories are used within the context of the psychiatric paradigm, usually to imply a unidirectional relationship between the mind and body (psychological problems are attributed by proponents as CAUSES of the illness, and not considered as EFFECTS of chronic, serious illness), privileging the mind’s effect on the body without considering the body’s effect on the mind, therefore frequently manifesting as an example of the cultural myth of ‘mind over matter’. (Wendell, 1996)
A seventh Category, ‘Holistic‘, an approach to any state of the body taking into consideration psychological factors in physical conditions and physical factors in psychological conditions as described by Bartol and Eakes, (1995) for example, an approach endorsed by the World Health Organisation, has been, so far, conspicuous by its absence in the deliberations on ME/CFS by proponents of the psychiatric paradigm. Often, within the literature of the psychiatric paradigm, the first six categories (but in particular the first FOUR categories) identified above are used concurrently, interchangeably, and confusingly. Frequent examples of this tendency in the literature are evident in the examples of text collated in Hooper (2004) and Marshall and Williams, (1996, 1999). (Footnote 3)
The various discursive categories of ‘psychosomatic’ illness, which have been broadly described above, can have many descriptive terms applied to them, which are also used interchangeably and confusingly within the literature of the psychiatric paradigm and applied to ME/CFS sufferers. Such descriptions include: ‘psychosomatic’ ‘Functional Somatic Syndrome’ ‘somatization’ ‘hysteria’ ‘conversion disorder’ and ‘psychogenic’.
3. Failure to differentiate psychological problems found in chronic illnesses from psychiatric illness per se.
Proponents of the Psychiatric Paradigm consistently fail to clearly demarcate the differences in any ‘anxiety’ or ‘depression’ or other emotional/psychological problems that might be diagnosed in some (by no means all) ME/CFS sufferers (Dutton, 1992). This has the effect of incorrectly attributing such problems as the causes or perpetuating factors of ‘CFS’. So, for example, they frequently fail to demarcate the possible types of anxiety or depression that might be found in ME/CFS (certainly not always), e.g. as delineated by Stein (2001):
“1. grief due to loss of health, social connections, family support, financial capability, career and uncertainty re (sic) all of these;
2. change in mood/cognition as part of the physical disorder of CFS (similar to mood change in MS or Parkinson’s disease);
3. comorbid depressive disorder and
4. mood change due to medication or food or withdrawal from either of these.”
It is significant that, while psychiatrists such as Stein are concerned with the impact on quality of life of serious illness such as ME/CFS (as exemplified in this comment):
“Grief is not a disorder. It is a normal developmental process which enables people to deal with overwhelming loss. It is an understandable reaction to a serious, uncertain, stigmatizing and chronic disorder. Grief is therefore common during the initial post diagnostic period and may recur each time there are new changes in health or life situation.”
Such considerations are not deliberated or considered within the vast majority of the literature advocating the psychiatric paradigm. This indicates that the high figures of ‘co-morbid anxiety and depression’ in ‘CFS’ claimed frequently by proponents of the psychiatric paradigm are untenable: firstly because of the heterogeneity of patient samples in research conducted under the auspices of the psychiatric paradigm (discussed later in this paper), but also, in regard to the issue of psychological problems, because proponents of the psychiatric paradigm fail to differentiate normal grief or fear reactions to chronic illness, neurologically mediated mental disturbances, and other environmentally-mediated mental disturbances such as, for example, reactions to medication or hypoglycaemia due to lack of food (all of which may be transitory), from anxiety and depressive disorders that might be present independent of the illness of ME/CFS (the ‘co-morbid’ or even ’pre-morbid’ (Dutton, 1992) disorders), and place them under a catch-all category of ‘co-morbid’ psychological disorder.
4. Flawed research design
Within their research projects, proponents of the psychiatric paradigm consistently fail to demarcate ME/CFS from other disorders involving ‘fatigue‘, some of which may have a psychological component (Jason et al, 1997), such as idiopathic chronic fatigue (classified by the WHO as ICD-10 F48, a psychiatric disorder), depression, Fibromyalgia (Classified by the WHO as a Soft Tissue Disorder), ‘burnout’ and indeed ANY ‘fatigue state‘, none of which are ME/CFS. They then generalise any results from a highly heterogeneous sample which may NOT apply to those who are ME/CFS sufferers (Caruthers et al, 2003, Jason et al, 1997). In light of their theoretical assumptions regarding CBT/GET, and the dangers associated with those treatments to ME/CFS G93.3 sufferers, they are therefore placing such sufferers at risk (see Kennedy & Bryant, 2004, and point 7 below).
Significantly, their research has failed to include Seriously Affected Sufferers to date, and yet their generalisations are applied to this group also. They also sometimes exclude patients with cardinal symptoms of ME/CFS in their samples, for example, sleep disorder in Fulcher and White, (1997) yet continue to generalise, within their literature, any ’successes’ of their proposed ‘treatments’ (especially Cognitive Behavioural Therapy and ‘Graded Exercise/Activity’ regimes, discussed below) to all patients (for example, even those with sleep disorders).
The continued use of criteria such as the Oxford Criteria by some in particular, actually presents a major methodological problems which proponents of the psychiatric paradigm continue to ignore. The Oxford criteria exclusion definition technically prevents a patient with an organic brain disease from entering into this trial. ME/CFS ICD-10 G93.3 is actually an organic brain disease as listed by the WHO and this classification is agreed by the UK Government. What is more, most ME/CFS sufferers will exhibit signs and symptoms of organic brain disease, and especially those seriously affected. By the logic of the Oxford Criteria, they should be excluded. This anomaly is one of the major flaws of the Oxford Criteria, yet these criteria continue to be used by proponents of the psychiatric paradigm, for example, in the ongoing PACE Trial (Kennedy and Bryant, 2004, Bryant 2004).
5. Fatigue as a trivialising term
Proponents of the psychiatric paradigm consistently fail to discuss the problem of the issue of ‘fatigue’ as applies to ME/CFS sufferers, thereby incorrectly presenting ‘fatigue’ as merely ‘tiredness’, despite the evidence that the word ‘fatigue’ is inadequate to describe the physical abnormalities (both signs and symptoms) that occur in ME/CFS. In the same context, they fail to acknowledge that ‘fatigue’ (which might mean tiredness, drowsiness, exhaustion, disturbed level of consciousness, weakness, paralysis, or feelings of malaise, depending on how certain illnesses are experienced or linguistically constructed by individuals) is present in MOST organic illnesses, acute and chronic. Indeed: “Fatigue is both a normal and a pathological feature of everyday life’ (Hyde 1992: 11).
Proponents of the psychiatric paradigm, in their literature, tend to associate ‘fatigue’ with a psychological state, ignoring the physiological reasons that may contribute to the bodily symptoms in ME/CFS, with the effect that these become generalised, and often trivialised, as ‘fatigue’. As Hyde also points out, to place such an emphasis on such a generalised, unspecific, indefinable and immeasurable term as ‘fatigue’, present in both healthy patients and those with both organic and psychological illness, the elimination of hundreds of other diseases are necessitated. This logistical flaw results in only the most limited investigation being encouraged for ME/CFS patients, and NOT in areas that might yield definitive results, such as certain brain scans (as discussed and referenced in Hyde et al, 1992, Marshall et al, 2001, Carruthers et al, 2003).
Particularly relevant to ME/CFS sufferers also is the problem also identified by Hyde (1992: 11-12): ‘…taking the fatigue as the flagship symptoms of a disease not only bestows the disease with a certain Rip Van Winkle humour, but removes the urgency of the fact that most ME/CFS symptoms are in effect CNS symptoms.’
In this context the ramifications of such serious, disabling symptoms as found in ME/CFS are both trivialised and ignored. The problem is compounded by the frequent tendency, by proponents of the psychiatric paradigm themselves and taken up uncritically by others, to use, incorrectly, the term ‘chronic fatigue’ instead of and interchangeably with ‘chronic fatigue syndrome’, even though both terms denote completely different diseases. Chronic Fatigue Syndrome is described in the WHO ICD-10 as synonymous with (therefore merely another name for) the neurological disease ME, while chronic fatigue is assigned a different category of illness in the ICD-10 (Psychiatric). This incorrect practice of using the terms ‘chronic fatigue’ and ‘chronic fatigues syndrome’ interchangeably and confusingly has a direct relationship to the research design flaws delineated in point 4 of this document, and the actions described in point 1.
6. Promotion of Cognitive Behavioural Therapy as ‘cure’ for a neurological illness
They promote the use of Cognitive Behavioural Therapy, NOT as a strategy of coping with one’s illness, but as a ‘cure’ for ME/CFS, (which, it must be remembered, has been both classified and consistently demonstrated as a neurological illness) believing that the multi-system physiological abnormalities (manifesting as symptoms) can be improved to the point of ‘recovery’, merely by challenging the illness beliefs and behaviour of the sufferer (see for example, Sharpe,1996: 248, Stulemeijer et al, 2004). Their rationale for the use of CBT is as a ’cure’ for a neurological illness that they do not even recognise, an illogical position unheard of in regard to medical approaches to any other neurological or other organic illness.
7. Promotion of Graded Exercise despite the evidence of risk
They promote ‘Graded Exercise/Activity Therapy‘ (GET or GAT) regimes, even though their own research in this area has been criticised for the high drop out rate of patient samples, and the patients excluded from such trials (Carruthers et al, 2003, Kennedy and Bryant, 2004). In promoting GET or GAT, they continue to ignore the documented harmful effects and therefore potential dangers of ‘Graded Exercise/’Activity’ for ME/CFS sufferers, for example as demonstrated in Van de Sande (2004) Carruthers et al (2003) 25% Group (2004) Shepherd (2001) Action for ME (2001)
8. Cultivation of a ‘Culture of Ignorance’
Proponents of the Psychiatric Paradigm frequently and illogically describe ME/CFS as ‘Medically Unexplained’ (see for example, Rief and Sharpe, 2004). Ironically, they then promote a state of ‘cultivated ignorance’ about patient signs and symptoms, by discouraging all but the most limited of biomedical investigations/treatments for ME/CFS sufferers (as demonstrated in Montague and Hooper, 2001).
9. Prejudicial Descriptions of Patients
Within their literature, proponents of the Psychiatric Paradigm consistently discursively construct ME/CFS sufferers as mentally, socially, and emotionally deviant (Footnote 4) in various ways, applying their own subjective moral judgements and thymic categories of dysphoria (Footnote 5), which frequently appear prejudicial, on to sufferers. Examples of these are comprehensively documented in, for example, Hooper (2004) and Marshall and Williams, (1996, 1999), and discussed in Kennedy, 2004 (a).
10. Lack of reflexivity or epistemological and methodological insight
There is a marked lack of the reflexivity or critical self reflection by proponents of the psychiatric paradigm that would be normally be expected in such literature, in order to identify potential theoretical problems in research, (Harding, 1987) and therefore this epistemological problem, identified as a problem to be addressed in the social sciences, (Brunskell, 1998) and therefore much more frequently considered within those disciplines, remains un-addressed by proponents of the psychiatric paradigm within their literature.
The above problem is confirmed when considering another methodological criticism to be made of research conducted by proponents of psychiatric paradigm. Much of their studies involves quantitative method. The potential problem with any quantitative approach is that qualitative factors, those which are subjective, for example, bodily experiences such as pain, exhaustion, emotions, are measured quantitatively, but the parameters for measurement are constructed within the context of the researcher’s own assumptions. So, when research subjects (or patients) are questioned, they have to comply with answering a set of closed questions, which are constructed according to the researcher’s agenda (and possibly ideological assumptions), leaving no room for qualitative clarification by the patient/research subject.
An example of this phenomenon within the psychiatric paradigm include the use of the ‘SPHERE’ checklist (Hickie et al, 1996). In this method, a number of closed questions (requiring a YES or NO answer) are put to the patient. Answers in the positive to any of these questions can lead to a diagnosis (from either researcher or clinician) of psychiatric disorder. Ironically, the majority of the questions relate to bodily symptoms that will be experienced in MANY organic illnesses, and will be specifically experienced by ME/CFS sufferers, and which can be explained as resulting from Central Nervous System dysfunction, (Hyde and Jain, 1992) for example. The symptoms include: head pain, irritability, poor memory, pains in limbs, muscle pain after activity, fatigue, emotional lability, fainting, nausea, arms and legs feeling heavy, flatulence and abdominal distension, pyrexia, back pain, hypersonic, post-exertional malaise, sore throats, numbness or tingling sensations, muscle weakness, Diarrhoea or constipation, sleeping difficulties, dizziness, fatigue even at rest, difficulties with concentration, and aphasia.
If a researcher (or doctor) assumes that ME/CFS is a psychological or behavioural disorder, they will diagnose a sufferer of the above symptoms as mentally ill, even though such symptoms indicate a high level of physical dysfunction and suffering, and are entirely consistent with Central Nervous System Dysfunction as discussed, for example, in Hyde et al, 1992. The WHO ICD-10 neurological classification of ME/CFS is based on the large amount of research indicating neurological dysfunction.
This specific way that the personal subjective bias of a researcher or doctor will influence the diagnosing of somatization disorder in this way is discussed in Jason et al (1997), and demonstrated in Johnson et al (1996). As Stein (2001) also states:
“It is a mistake to use screening instruments such as the Beck Depression Inventory, the General Health Questionnaire or the SPHERE to diagnose mental illness in persons with undiagnosed somatic complaints including those with CFS because of the unstated, unproven and incorrect assumption that the somatic complaints are of psychological origin.”
The construction of YES/NO-type or other closed-answer questions, and the expression of apparently ideological assumptions as mathematical data, can be very simplistic ways of attempting to measure human experience, and, as has been demonstrated above, subject to skewed results, based on the biases of the researcher. In the case of the psychiatric paradigm, the often demonstrably prejudicial value judgements as illustrated by, for example, key members of the Wessely School, immediately raises doubts about any claims to objectivity inherent in their research literature, and this problem is compounded by their lack of critical self-reflection, even though faced with critique of the value judgements expressed within their literature (for examples of these see Hooper, 2004, and Marshall and Williams, 1996, 1999), and the continuing protests by ME/CFS sufferers about the damage to health and welfare caused by such assumptions.
Does the Psychiatric Paradigm result in failure of care?
The approaches towards ‘treatment’ of sufferers of ME/CFS, by proponents of the psychiatric paradigm are in stark contrast to the care plan advocated by psychiatrists such as Stein (2001) :
“The treatment of psychological symptoms in CFS is fourfold:
1. treat the physical illness
2. actively advocate for the patient’s health, mental health and economic needs,
3. offer or refer for psychotherapy to support the patient’s grieving process and encourage the formation of sustainable values and expectations and 4. use low dose psychotropics for those in whom anxiety or depression symptoms are disabling and/ or are interfering significantly with quality of life.”
The psychiatric paradigm as proposed by Wessely et al fails to achieve the above exemplar because:
(a). They do not accept the demonstrated organic, neurological nature of ME/CFS, despite the large body of evidence that demonstrates this, preferring to maintain that it is caused or perpetuated by psychological, social, emotional and behavioural factors. In line with this position, they discourage all but the most limited of biomedical investigations/treatments for ME/CFS sufferers, and, ironically, discouraging those investigations in which strongest evidence of organic pathology are being delivered (Hooper et al, 2001, Marshall et al, 2001).
(b) They are involved in discursive constructions of ME/CFS sufferers as social and mental deviants, therefore contributing to a stigmatization of sufferers, leading to social exclusion, and material and social inequalities (as described, for example, in Michell, 2004, Hyde et al, 1992, p 25-37, TYMES Trust, 2003, Jason, 2000).
There is also evidence to show that key members of the ‘Wessely School’ are involved in denying benefits and pensions to ME/CFS sufferers. (e.g. Walker, 2003). Uncritical acceptance of the psychiatric paradigm has led to the forced incarceration of ME/CFS children, against their own and their parents’ wishes, and enforced exercise regimes and psychiatric treatment (Mar, 2001, TYMES Trust, 2003, Michell, 2004) There is also evidence of personal involvement of key proponents of the psychiatric paradigm in such treatment of ME/CFS child sufferers (Walker, 2003).
(c ) They promote Cognitive Behavioural Therapy (CBT) in their literature, but frequently ignore the other available forms of psychological support strategies for ME/CFS sufferers (if needed). Indeed, they do not promote CBT as a support strategy, but as a ‘cure’ for ME/CFS, (a neurological illness) believing that the multi-system physiological abnormalities (manifesting as symptoms) can be improved to the point of ‘recovery’, merely by challenging the illness beliefs and behaviour of the sufferer. Their rationale for the use of CBT is as a ’cure’ for a neurological illness that they do not even recognise, a position unheard of in regard to any other neurological or other organic illness.
(d) They fail to differentiate between the different forms of psychological problems that might (though not always) be faced by ME/CFS sufferers, implying ANY psychological problem is a CAUSE rather than EFFECT of the illness. This leads to a conspicuous lack of commitment to promoting ways of offering psychological and social support for the impact on quality of life caused by this chronic illness. The contrasts between Stein’s model of care, and the positions adopted and the actions taken by proponents of the psychiatric paradigm, demonstrates a failure of care of ME/CFS sufferers on the part of the latter, and this failure has specific adverse affects upon the health and welfare of such patients.
Effects of the Psychiatric Paradigm on ME/CFS sufferers
Documented iatrogenic effects, on patients, resulting from the Psychiatric Paradigm of ME/CFS, include:
1. Lack of medical investigation of physical abnormalities.
2. Lack of appropriate bio-medical treatment and support (Footnote 6)
3. Denial of benefits, insurance or pension payments to sufferers, even though the extent of their disabilities would, with regard to other organic illnesses, entitle such sufferers to these.
4. Hostility and/or lack of empathy from many in the medical profession, families, communities and society at large, who frequently believe that the illness is a result of social, mental and behavioural deviance.
5. Social Exclusion, and other material and social inequalities resulting from the above and from lack of social, welfare and financial support associated with the belief that this illness is a result of deviance.
6. Forced treatment of patients, including forced incarceration of both children and adults.
7. Continued distress at not having one’s physical suffering and limitations believed.
8. Adverse impact on quality of life to such a degree that some ME/CFS sufferers have committed suicide. (Footnote 7)
9. Increased Post exertional malaise following Graded Exercise/Activity
Regimes, which have been reported as reducing functional ability levels and increasing symptom severity (see point 7 for references).
This document has provided only a brief summary of the psychiatric paradigm and the fundamental flaws to be found within. The range and depth of problems with this paradigm raises serious issues of validity and reliability.
A full discussion of the philosophical problem of how the mind and body is to be considered in medicine is outside the scope of this document. However, it is important to remember that assumptions around ‘psychosomatic illness’ promoted within the psychiatric paradigm have been heavily critiqued (for example, Webster, 1995), are unverifiable at present (Stein, 2004, Dalen, 2003), and may remain so indefinitely.
Crucially, the lack of clarity of concepts demonstrated within the psychiatric paradigm, the refusal to accept the problems with and lack of proof of their own speculative hypotheses, evidence that regularly disproves the psychiatric paradigm and, most importantly, their refusal to acknowledge the prejudicial judgements made about ME/CFS sufferers within the psychiatric paradigm and the iatrogenic suffering this has caused (and continues to), has rendered the theoretical position of this paradigm untenable.
As the proponents of this paradigm continue to promote such flawed concepts, within their own literature, and in advice to government and other parties, even though they have been made aware of these flaws and the critically adverse impact they have on ME/CFS sufferers, on many occasions, it is impossible to reach any conclusion other than that such continued actions represent a clear breach of medical ethics: primarily, a fundamental abrogation of duty to patients suffering from this disease.
In light of the considerable theoretical, methodological and ethical problems identified within the psychiatric paradigm, and the endangerment and disenfranchisement to ME/CFS sufferers these continue to cause, a review of all ‘bio- psychosocial’ approaches to ME/CFS adopted in health and social policies, globally, is necessary as a matter of urgency.
The One Click Group
18 January 2005
1. See Marshall et al, 2001, for an account of this. Also see:
Also see ‘WHO Geneva Headquarters, classification information ME/CFS’ Available on the One Click Website:
WHO Geneva Headquarters, classification information 'ME/CFS’
2. An indication of the extensive body of evidence supporting the recognition of ME/CFS as a neurological disease, in line with it’s classification as such by the WHO ICD-10, and the multi-systemic physiological abnormalities presenting as part of the disease can be found in documents and publications such as Montague and Hooper (2001) Marshall, Williams and Hooper (2001), Hyde et al (1992) Carruthers et al (2003) and the Journal of Chronic Fatigue Syndrome. It must be noted, however, that such references, and evidence, contained in these documents, are by no means exhaustive.
3. These themes, and others, have been identified as part of a research project into the writings of the psychiatric paradigm that I am currently undertaking (summarised in Kennedy, 2004), using social science research techniques of narrative, linguistic, textual and discourse analysis. I am currently writing up the results of this research, which will be available later this year.
4. Deviance is defined as being or doing outside cultural norms (Macionis and Plummer, 1997, p.208). Labels of deviance are not ‘natural’; they are socially constructed, i.e. by the culture we live in. Crime is an example of ‘deviance’, though not all criminals are considered deviant (for example, those committing petty crimes such as using the telephone at work for personal calls). ‘Deviance’ usually involves moral value judgements of ‘badness’ (see footnote below) being applied to an act, or, more worryingly, a person. The extensive quotes collated in Hooper’s and Williams’ documents demonstrate a frequent categorisation of ME/CFS sufferers as being outside social norms in terms, not of having a disability, but of the frequent implication that their illness is the result of character flaws or morally inappropriate (‘deviant’) behaviour such as malingering or hypochondria (Kennedy 2004 (a)).
5. The term THYMIC CATEGORIES (Martin and Ringham, 2000) refers to the linguistic categorisation of subjects or objects as ’good’ or bad’, that can be identified when conducting discourse analysis on produced texts. Thymic categories are constructed by two poles of euphoria (good or pleasant feelings) and dysphoria (bad or unpleasant feelings), corresponding to evaluations of goodness or badness. Such characteristics are a feature of all discourses, including academic and medical. My concern in this respect regards the way in which observable dysphoric categories are frequently applied to the behaviour, thoughts, actions and characters of ME/CFS patients within the literature of proponents of the psychiatric paradigm, with a corresponding absence of euphoric categories. The observable, overall effect of such linguistic constructions is that of an author’s consistent evaluation of ME/CFS patients and their feelings, beliefs, actions and characters as ‘bad’.
6. For example, the proposed ‘CFS/ME’ centres in Britain will only provide CBT/GET ‘treatments’ as a matter of course, and there has been no evidence of provision of, for example, SPECT or other brains scans which have been shown to provide clear evidence of brain dysfunction in a high majority of ME/CFS patients (Hyde et al, 1992, Carruthers et al, 2003, Marshall et al, 2001). Nor is there any apparent system for referral to neurological, immunological or endocrinological specialists for either diagnosis or treatment of this neurological disease. See for example the ‘Harrow and Hillingdon Bid’, available on the One click Website: See One Click
7. The Suicide Register was organised by Sheila Barry after her 27 year old daughter, an ME/CFS sufferer, committed suicide (See Walker, 2003: vii).
25% ME Group, ‘Severely Affected ME (Myalgic Encephalomyelitis) Analysis Report on Questionnaire issued January 2004’‘ March 2004.
Action for ME, “Severely Neglected - M.E. in the UK” (2001).
Bartol, G. M., & Eakes, G. G. (1995). A study of the meanings assigned to the term psychosomatic among health care professionals. Perspectives in Psychiatric Care 31, 24-9.
Brunskell, H. ‘Feminist methodology’ in Seale, C. (ed.) Researching Society and Culture (1998) Sage, London, 37-47.
Bryant, J. The PACE Report, 2004. Available on The One Click Group Website:
See One Click
Carruthers, B. et al (2003) “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, Vol. 11(1), pp 7 - 115.
Dalen, P. ‘Foreword’ in Walker, 2003, p ix-xiii.
David A, Wessely S. Chronic Fatigue, ME, and ICD 10 Lancet
Dutton, D. ‘Depression/Somatization Explanations for the Chronic Fatigue Syndrome: A Critical Review’ in Hyde et al, 1992. Fulcher, K.Y. White, P. ‘Randomised Control Trial of graded exercise in patients with the chronic fatigue syndrome’ British Medical Journal 7th June 1997:vol 314:1647-1662.
Harding, S. Feminism and Methodology (1987) Open University Press, Milton Keynes.
Hickie IB, Hooker AW, Hadzi-Pavlovic D, Bennett BK, Wilson AJ, Lloyd AR. Fatigue in selected ME International
Posted at 27.1.05 by fnqsupport
Tuesday, November 09, 2004
ME / CFS CRITICAL CONSIDERATIONS
**Clarification about CRITICAL CONSIDERATIONS**
Re:: FNQ Support Nov 6
2nd November 2004
In response to enquiries about the source of one item of information contained in the above document, the following clarification is provided.
It concerns the information about "incentives" being offered to GPs for identifying and referring patients with fibromyalgia.
The source of this information was Dr Stephen Ladyman MP, Parliamentary Under Secretary of State.
Dr Ladyman spoke in person at the All Party Parliamentary Group on Fibromyalgia held on 12th May 2004 in the House of Commons and his contribution was revealing.
He said clearly and unequivocally that the Government would now be giving "incentives" to GPs for identifying patients with fibromyalgia. The main thrust of his speech was that the Government had invested substantial funding in order to set up new clinics for "CFS/ME" patients and that fibromyalgia patients would be included in this funding.
Dr Ladyman was asked outright why patients with fibromyalgia were to be included in the MRC trials on ME / CFS. His answer was that Government did not get involved in medical research.
It was pointed out to him that Pacing was a common-sense life-style approach adopted by many patients with chronic diseases, which did not merit being subjected to expensive clinical trials.
Dr Ladyman was then reminded that the Health Minister, Lord Warner, had confirmed that the Government now accepts that ME / CFS is classified by the WHO as a neurological disorder.
Dr Ladyman replied that that the MRC believed these trials had merit.
He then said that he could not understand why there was such a fuss about the WHO classifications and that "part of the time, CFS/ME had been listed as a mental health problem".
Dr Ladyman went on to say that other people believe CFS/ME is a psychological or psychiatric disease, and that "some of these scientists are very highly regarded by the Government".
Dr Ladyman left early and the meeting continued without him.
Posted at 9.11.04 by fnqsupport
Sunday, November 07, 2004
Immunologic Aspects of Chronic Fatigue Syndrome
Immunologic Aspects of Chronic Fatigue Syndrome
Report on a Research Symposium Convened by The CFIDS Association of America and Co-Sponsored by the US Centers for Disease Control and Prevention and the National Institutes of Health.
Journal: Neuroimmunomodulation. 2004;11(6):351-7.
Authors: Gerrity TR, Papanicolaou DA, Amsterdam JD, Bingham S, Grossman A, Hedrick T, Herberman RB, Krueger G, Levine S, Mohagheghpour N, Moore RC, Oleske J, Snell CR.
Affiliation: Worcester Polytechnic Institute, Worcester, Mass., USA.
NLM Citation: PMID: 15467349
Chronic fatigue syndrome (CFS) is a serious health concern affecting over 800,000 Americans of all ages, races, socioeconomic groups and genders. The etiology and pathophysiology of CFS are unknown, yet studies have suggested an involvement of the immune system.
A symposium was organized in October 2001 to explore the possibility of an association between immune dysfunction and CFS, with special emphasis on the interactions between immune dysfunction and other abnormalities noted in the neuroendocrine and autonomic nervous systems of individuals with CFS.
This paper represents the consensus of the panel of experts who participated in this meeting. Data suggest that persons with CFS manifest changes in immune responses that fall outside normative ranges, but current research does not provide definitive evidence on whether these immune abnormalities are a cause or result of the illness.
It has become clear that CFS cannot be understood based on single measurements of immune, endocrine, cardiovascular, or autonomic nervous system dysfunction. This panel encourages a new emphasis on multidisciplinary research into CFS.
Copyright(c) 2004 S. Karger AG, Basel.
Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis, is a serious health concern. A study by DePaul University estimates CFS prevalence at approximately 422 per 100,000 adults in the USA . This means as many as 800,000 people nationwide suffer from the condition.
Studies show that 85–90% of people with CFS have not been diagnosed and are not receiving appropriate medical care for their illness. It is nearly twice as common in women as men.
To put CFS prevalence into perspective, systemic lupus erythematosus affects 50 per 100,000, multiple sclerosis affects 104 per 100,000, and rheumatoid arthritis affects 1,022 per 100,000 American adults.
CFS affects adults, adolescents and older children of all races and socioeconomic groups. Additional data from the DePaul study found a significantly increased prevalence in minorities and persons in lower-income brackets, two populations that have not been previously recognized as being at greater risk than non-minorities for CFS, and which are generally underserved by the medical community.
Of all the people with CFS identified in this study, only 10% had been previously diagnosed, lending extra impetus to efforts to increase knowledge and awareness of CFS.
There are as yet no sensitive and specific diagnostic markers for CFS. To exclude other mental and physical causes of their symptoms, persons with CFS often must undergo an extensive battery of tests before the CFS diagnosis is considered.
To be diagnosed with CFS, a person must meet the following 1994 International Research Case Definition criteria :
* Unexplained persistent or relapsing fatigue for at least 6 months’ duration that is of new or definite onset, not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities and
* Four or more of the following eight symptoms, persistent or relapsing, for at least 6 months: impairment of short-term memory or concentration; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep, and postexertional malaise lasting more than 24 h.
CFS seems to be a multi-system disorder. The etiology and pathophysiology of the syndrome is unknown. However, there have been a number of studies suggesting an involvement of the immune system in the pathophysiology of CFS. This symposium was designed to explore the possibility of an association between the immunologic system and CFS and, if so, what that association might be.
Following one day of presentations by experts, an independent panel composed of well-respected researchers and practitioners in the fields of biostatistics, immunology, infectious disease, rheumatology, endocrinology, psychiatry, exercise physiology, epidemiology, pediatrics, and internal medicine, as well as two patient representatives, weighed the scientific evidence and developed a draft statement in response to the following five key questions:
1. What is the evidence that there is dysregulation of the immune system in CFS?
2. What is the evidence of the involvement of infectious agents in CFS?
3. Are there examples or models of immune dysfunction that could lead to the symptoms of CFS?
4. What can we learn from the existing data on interactions among the immune system, HPA axis, and autonomic nervous system about the clinical presentations of CFS?
(a) What are the recommendations for future research?
(b) What are the recommended opportunities for research collaboration?
(c) What methodological barriers are there to the careful study of these recommendations?
This statement was prepared by a panel of experts, based on (1) presentations by investigators working in areas relevant to the consensus questions during a 1-day scientific court session; (2) questions and statements from conference attendees during open discussion periods that are part of the scientific court session, and (3) closed deliberations by the panel during 11/2 days. This statement is an independent report of the panel and is not a policy statement of The CFIDS Association of America, the National Institutes of Health or the Centers for Disease Control and Prevention.
Copyright(c) 2004 S. Karger AG, Basel.
Posted at 7.11.04 by fnqsupport
Saturday, November 06, 2004
ME / CFS and clinical trials in the UK
Margaret Williams (former medico-legal researcher)
1st November 2004
If democracy and not dictatorship prevails in the UK, then mindful of the recent submission of Professor David Healy from Cardiff University to the House of Commons Health Select Committee that "Every patient who enters a clinical trial in the United Kingdom is putting every Member of Parliament in a state of legal jeopardy"
(http://www.meactionuk,org,uk/HoC_Select_Ctte_inquiry_into_Pharma) the UK ME community may wish to require as a matter of urgency that their Member of Parliament contacts in writing both the Chief Executive of the Medical Research Council (Professor Colin Blakemore) and the Chief Medical Officer (Professor Sir Liam Donaldson) -- with copies to both the Medical Defence Union and The Medical Protection Society -- requesting written assurance that their constituents with myalgic encephalomyelitis (ME) who are to take part in the MRC PACE trials on "CFS/ME and fibromyalgia (FM)", or who are to be referred to any of the newly funded centres for "CFS/ME/FM" will not, as a direct consequence of the psychiatric intervention involved, suffer a foreseeable deterioration in their medical condition in the light of the published evidence that such deterioration would seem to be inevitable.
For psychiatrists of the "Wessely School" and for state officials whom they advise simply to say that they do not accept such evidence is indefensible and is not justifiable in law (see "Clinical Review: How does evidence based guidance influence determination of medical negligence?" Brian Hurwitz. BMJ 2004:329:1024-1028).
Professor Hurwitz states "discretion requires to be exercised in accordance with the patient's best interests. Evidence-based guidelines set normative standards but they do not constitute a de facto legal standard of care. The bottom line is: guidelines do not actually set legal standards for clinical care".
MPs might therefore be urged to request a credible explanation as to why both the MRC trials and the new centres will be employing cognitive behavioural therapy (CBT) and graded exercise therapy (GET) when there is significant publicly available evidence that such regimes may be actively harmful to those with ME / CFS because they are based on the psychiatrists' discredited assertion that "CFS/ME" is a "faulty belief system" that can be "corrected" by CBT and incremental aerobic exercise regimes.
Substantial mainstream published evidence that the psychiatrists are wrong was brought to the attention of both Professor Sir Liam Donaldson and Professor Colin Blakemore themselves, as well as to key members of the CMO's Working Group on "CFS/ME" and to members of the MRC Research Advisory Group on "CFS/ME" but it has been comprehensively ignored. It will in due course also be put before the National Institute for Clinical Excellence (NICE) when that body begins accepting submissions (probably in February 2005).
The issue is whether or not compulsory exercise regimes and "rehabilitative programmes" may be harmful to those with ME / CFS.
In 1999 Professor Paul Cheney from the US went on record as stating: "The most important thing about exercise is not to have (patients with ME / CFS) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA" (Lecture given in Orlando, Florida at the International Congress of Bioenergetic Medicine, 5th-7th February 1999).
Significantly, there is now further supportive evidence that has emerged from the 7th AACFS International Conference held in Madison, Wisconsin, from 8-10th October 2004: "An analysis of metabolic features using MRSI (magnetic resonance spectroscopy imaging) showed elevated lactate levels, which suggests mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy".
Given this evidence, how can forced aerobic exercise be beneficial to such patients? Will the MRC trial participants be screened for such abnormalities before taking part in the aerobic exercise regimes that are the basis of the trial?
Since as long ago as 1996 it has been known that those with ME / CFS have abnormal lung function tests, with a significant reduction in all lung function parameters tested (see "Lung function test findings in patients with chronic fatigue syndrome" De Lorenzo et al. Australia and New Zealand Journal of Medicine 1996:26:4:563-564), and Jo Nijs from Belgium presented evidence at the Wisconsin international conference of underlying lung damage in ME / CFS through intracellular immune dysregulation with impairment of cardiopulmonary function.
How can forced aerobic exercise regimes be guaranteed to be harmless where there is existing underlying lung damage? What prior screening measures will be undertaken by the psychiatrists to determine whether or not trial participants have existing lung damage, or will their lack of fitness simply be ascribed to "de-conditioning"?
Further evidence of impaired oxygen up-take in those with ME / CFS was presented at the Wisconsin conference: a Spanish study on aerobic exercise by Anna Garcia-Quintana provided evidence that in ME / CFS, the average maximal oxygen uptake was only 15.2, whilst for sedentary healthy controls it was 25.9, but for physically active controls it was 66.6.
This accords with evidence from 1999 that showed impaired oxygen delivery to muscle in ME / CFS patients: oxygen delivery represents the ability to get oxygen into the small vessels of the muscle and the study demonstrated that ME / CFS patients had recovery rates for oxygen saturation that were 60% lower than normal subjects, leading to reduced exercise capacity (see "Impaired oxygen delivery to muscle in chronic fatigue syndrome" Kevin K McCully and Benjamin H Natelson. Clinical Science 1999:97:603-608).
How would forced aerobic graded exercise be beneficial to patients with reduced exercise capacity?
There is also evidence that many people with ME / CFS may have a serious heart problem. In April 2003, Arnold Peckerman MD from New Jersey reported findings to the annual meeting of the American Physiological Society that demonstrated via a sophisticated test that after exercise, the heart of those with ME / CFS pumped less blood than it did at rest. Normally the heart pumps out more blood on exercise, but this does not happen when ME / CFS patients are exercised. Peckerman is on record as saying: "Basically we are talking about heart failure. Chronic fatigue syndrome is a progressive disease".
Cardiologist Joseph Miller MD from Emory University agrees that these patients have serious heart problems: "A drop in (blood pumped by the heart) during exercise is actually a marker of significant coronary artery obstruction".
What are the risks of forcing such patients to undertake aerobic exercise regimes and "push themselves back to fitness"?
The ME community will recall the case of Brynmor John MP who had ME but who was advised to exercise back to fitness; he dutifully tried to do so but collapsed and died coming out of the House of Commons gym.
Of concern is the knowledge that patients to be enrolled in these trials will apparently be required to sign a statement giving their written consent and waiving their right to sue for damages should any harm flow from participation in the MRC exercise trials.
Finally, the issue of case definition for trial participants remains controversial because at the Edinburgh Science Fest held on 9th April 2004, it is understood that psychiatrist Michael Sharpe informed attendees that the MRC PACE trials would include those with fibromyalgia as well as "CFS/ME" as it was desirable to have as wide a catchment as possible, and it is also understood that GPs are to be offered "incentives" to refer as many people as possible with fibromyalgia to the new centres. However, this seems to have been re-thought, because in the current issue of the ME Association newsletter (issue 92, October 2004), Michael Sharpe and his co-organisers now state: "patients who only have fibromyalgia will not come into the trial. We will, however, note those who have both CFS/ME and fibromyalgia to see if having both affects response to treatments (sic)".
Given that fibromyalgia is a distinct diagnosis (ICD-10 M 79), the issue of obfuscation is real, not least because evidence from Wisconsin presented by Professor Robert Suhadolnick demonstrates that "the higher the RNase L activity, the lower the patient's ability to function. These patients also have a low molecular weight 37 kDa RNase L which is not found in healthy controls, patients with depression or fibromyalgia patients".
Members of Parliament need to be fully aware of these facts in order to protect the best interests of their constituents.
Posted at 6.11.04 by fnqsupport
Friday, October 08, 2004
SINISTER SABOTAGE AND GROSS VINDICTIVENESS
SINISTER SABOTAGE AND GROSS VINDICTIVENESS
As some people will be aware, both myself and Jane Bryant have been victims of two campaigns, waged against us as individuals and our families, by prominent members of the ME/CFS community. These campaigns were undertaken with the intent to place the welfare of me and my family (including my seriously ill daughter- an ME sufferer) and Jane Bryant and her son (another seriously ill ME child sufferer) at catastrophic risk.
I am now in a position to make public the particular vindictive campaign against myself that took place.
Dr Charles Shepherd, Medical Advisor, Company Secretary and Trustee to the Myalgic 'Encephalopathy' Association, had written to me and Jane a number of times with sinister but vague threats about some sort of 'investigation'. Jane and I received such an email from him Saturday evening.
I found out recently that Dr Shepherd had, with a number of cronies, made complaints against me to my University, with the intention of getting me disciplined and/ or sacked, for the 'crime' of making legitimate criticisms about his conduct, and that of others, and asking legitimate and relevant questions about this on the One Click Website.
To lose my job would have had catastrophic ramifications for the welfare of me and my family, especially as, like many families with family members suffering from ME/CFS, we are already in poverty, because of the social and material inequalities caused when a family member becomes severely disabled with a devastating illness for which there is little to no social support. My good name, character and modest career aspirations were also put in danger by the actions of Dr Shepherd and his crew.
I would also like to remind people that this is not the first time that Dr Shepherd has engaged in such vindictiveness against fellow professionals. These are detailed in the document 'Concepts of Accountability, available to read on the One Click Website.
Thankfully, good sense has prevailed. I recently received communication from my University, reminding me of my contractual right to express public and personal political, religious, social and academic views, unconnected to the University, and that it would be inappropriate for my University to intervene. The matter is closed.
This has come as a great relief. But, it need hardly be said that the stress caused to myself and my family has affected the health of my daughter adversely.
Dr Shepherd and his cohorts should, quite simply, be ashamed of themselves. But although I was shocked by their behaviour, I am not surprised. Their actions are of people whose own wrongful actions have come under the spotlight, and who lash out in inappropriate ways, partly to divert from their own misdeeds, and partly out of irrational hatred and lack of integrity. When faced with the choice of answering questions and accepting constructive criticism, or ruining the lives of those who make those questions or criticism, such people always choose to do the latter. Time and time again Dr Shepherd has caused terrible trouble for people having the courage to disagree with him, or have a different viewpoint, or take him to task for his behaviour: people who have worked hard to make things better for ME/CFS sufferers. This should set alarm bells ringing in the collective consciousness of the ME/CFS community. Whose best interests are served by such behaviour? Certainly not that of the ME/CFS community itself.
On an even more sinister note, something far worse has been attempted to be done to Jane Bryant by another prominent person whose actions have been investigated and critiqued by One Click: a truly heinous action, which may be one of the worst things that can be done to a mother, placing her family at even more catastrophic risk. This appalling act emphasises, in stark focus, how, within ME/CFS, there are some pretty dangerous foxes in charge of the henhouse.
Certainly these appalling actions of the past few weeks, added to the years of appalling actions by those claiming to represent ME/CFS sufferers' interests, indicate just how much is at stake, and how much in danger ME/CFS sufferers and their advocates truly are, from those with sinister, vested interests: claiming to be on our side, but in reality sabotaging all efforts to improve the conditions facing the ME/CFS community.
Posted at 8.10.04 by fnqsupport
Tuesday, September 21, 2004
Big Brother in waiting ??
PSYCHIATRY AND PERFIDY By Gurli Bagnall July, 2004
"Academic psychiatry has all but lost contact with the population it is supposed to serve..Criticism is, if not actively discouraged, then politely but very firmly ignored."
N. McLaren, M.D. Psychiatrist, Australia, 1999
In the face of undeniable evidence to the contrary, X never admits to being wrong. In his (or her) mind, he is omnipotent.
As a self perceived superior being, he demonstrates contempt towards others who he has neither met nor spoken to. He attacks their characters and personalities and makes no secret of his displeasure if his judgment is questioned.
The [psychiatric] Diagnostic Manual no doubt lists a condition or two under "Personality Disorders" that match the behaviour, but what happens when people in positions of power, such as politicians and medical diagnosticians, fit the description? What happens to society when the same politicians and diagnosticians receive pecuniary and other rewards for manufacturing mental disorders where none exist?
Under the New Freedom Commission on Mental Health Act, President Bush has announced his plans to unveil a "sweeping mental health initiative" in July2004. "Sweeping" is the right word for he intends to "screen the whole US population for mental illness" and those deemed to be psychiatrically disturbed, will receive "state-of-the- art treatments" using "specific medications for specific conditions". Needless to say, the psychiatric community in general approves wholeheartedly and is extremely happy. (British Medical Journal, 19 June 2004).
Even though funding is urgently needed for more research into conditions such as cancer, AIDS, and the many poorly understood diseases that plague society today, Bush has been able to set aside millions of tax payer dollars to fund this grandiose scheme.
On looking into the matter further, one finds that President Bush and his family have financial interests in Eli Lilly, a giant pharmaceutical corporation which produces amongst its psychotropic (mind altering) products, the anti-psychotic drug, Zyprexa. This drug just happens to be one of the "specific medications" to be used in the proposed nationwide treatment programme. It also happens to have grossed $US4.28 billion internationally in 2003. (ZMagazine,Volume 17, No. 5. 24 May, 2004)
It has been said that democracies are no longer run by the people for the people but rather by big corporations that pay our elected representatives and other authorities to do their bidding. Dr.Stefan Kruszewski, one of two whistleblowers who saw the abuse of power in their state of Pensnsylvania ".charges in his suit that a number of drug companies used 'political friendships, money and other emoluments' to achieve 'a level of influence with the Pennsylvania's state government' and 'with the current president of the United States, George W. Bush to promote the use of their products in violation of the law and rights of Pennsylvania citizens'." (BMJ 10 July, 2004.)
If this is true, Bush is not just looking for dividends from Eli Lilly.
So to whom does his new Commission offer freedom?
Certainly not ordinary citizens of the United States.
The United Kingdom is a signatory to the Council of Europe Strasbourg Convention on Human Rights and Biomedicine. This Council is promoting the concept of using certain people in medical trials without their consent.
(i) Those deemed to be mentally ill (many of whom, as experience has shown, have a misdiagnosed physical condition).
(ii) Those for whom no known treatment is effective (for example sufferers of Myalgic Encephalomyelitis [ME] or Gulf War Syndrome [GWS]).
(iii) Children (who will be denied the benefits of parental protection).
The influence of Simon Wessely (professor of psychiatry at King's College, London), and his followers has already been instrumental in the removal of children from responsible and caring parents -children who were desperately ill with ME but who were nevertheless forcibly taken from their homes and admitted to psychiatric wards where their health generally deteriorated. The practice continues and the same abuse of power has occurred and occurs in the United States as well.
One wonders where the phrase "human rights" fits into this picture.
The trend to turn poorly understood diseases and normal human behaviour into psychiatric disorders can also be seen in Australia.
If we are to believe psychiatrist, Ian Hickie and his colleagues, the "epidemic" is rampant there. Although no doubt similar to other countries, the evolvement of the situation in Australia, particularly in regard to ME, is interesting.
In looking through the literature from 1990, one finds that Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker were quite sure ME(or chronic fatigue syndrome as they called it by then) was a physical disease: ". we have demonstrated that while depression and anxiety are common symptoms in people suffering from CFS" [as indeed they are in cancer, AIDS and other physical diseases] "there is no evidence from our well-defined sample to support the hypothesis that CFS is a somatic presentation of an underlying psychological disorder. In particular there is no evidence that CFS is a variant or expression of a depressive disorder.
Instead, our study supports the hypothesis that the current psychological symptoms of patients with CFS are a consequence of the disorder rather than evidence of antecedent vulnerability."(1) And in 1992, the same authors with the exception of Parker, confirmed their belief that "..the lack of strong associations between depression and immunological disturbance prior to treatment are less supportive of the view that CFS is primarily a form of depressive disorder or that immunological dysfunction in patients with CFS is secondary to concurrent depression." (2)
Not long after and with a speed sufficient to boggle the mind, they executed a U-turn: "Though most patients with the chronic fatigue syndrome improve, a substantial proportion remain functionally impaired. Psychological factors such as illness attitudes and coping style seem more important predictors of long term outcome than immunological variables."
"Patients who had not improved had a significantly higher rate of a primary psychiatric diagnosis at follow up."(3) Despite the vast numbers of published research papers which detail physical abnormalities in ME, Hickie ignored their existence as did Wessely
in the UK.
Three months later, the authors went a stage further when they introduced physical rehabilitation, exercise, cognitive behavioural therapy and antidepressants as treatments for CFS. They described this approach as "scientific methodology" and cast doubt upon patients' assessments of their own levels of fatigue and disability by describing them as "subjective" (4)
By May 1996, Hickie and Lloyd were ready to execute another U turn.
Where the typical ME sufferer had previously been described as a successful person with a Type A personality - an ambitious go-getter who generally originated from the middle classes - the finger was now pointed in another direction.
"The factors associated with prolonged fatigue were concurrent with psychological disorder, female gender, lower socioeconomic status and few total years of education."(5)
If a point of view, however erroneous, is repeated often enough, it will eventually be believed.
The situation gets even more interesting. In 1998, Hickie and others invented a new psychiatric "disorder" which they called non- melancholic depression - a "disorder" that could expediently be applied to anyone irrespective of his or her mental state and
particularly to ME/CFS sufferers. (6)
In the same year, Hickie was ready to introduce the concept of a ".range of rating strategies.. Results indicate some of the difficulties in operationalising determinants that may contribute to and sub-type the non-melancholic depressors, and demonstrate the advantages of using a range of rating strategies and raters. In this study psychiatric-generated judgments are clearly favoured.." (6)
The rest of us have come to know these "rating strategies" as questionnaires which can hardly be described as scientific - particularly when the answers are manipulated to fit a predetermined outcome. For example in a report relating to a questionnaire directed at Gulf War veterans, the "scientists" stated: ".. We adjusted [the answers] for confounding factors that had the potential to distort the results, such as education, rank." (7)
Diagnoses of mental disorders depend entirely upon the competence and lack of bias of the diagnostician for there are no diagnostic laboratory tests. If the above quoted mumbo-jumbo tells us nothing else, it does alert the reader to the fact that plans were afoot to devise a method of mass assessment for mental disorders by unscientific means. And, incidentally, a wonderful way to absorb ME/CFS into the melting pot.
On the other side of the world, the push continued. Wessely, like his Australian counterparts, had been saturating both the medical and general media with the view that chronic fatigue syndrome is a psychiatric disorder. In a paper entitled "Fatigue and psychiatric disorder: different or the same?" published in 1999, he, Hickie and others wrote: "Fatigue and psychiatric morbidity correlate highly with each other and across time. Most patients with persistent fatigue also have psychiatric disorder."(8)
The attitude clearly presented (and presents) dangers to those suffering undiagnosed heart conditions, respiratory disorders or any number of other undiagnosed physical diseases.
Nevertheless, our intrepid "researchers" moved right along, deterred not at all by such issues. Hickie expanded on the plan to introduce a rating system relating to what was loosely described as fatigue, anxiety and depression (9). Listed were a number of signs and symptoms which, if experienced during the past two weeks, were supposed to indicate psychiatric disorder. Included are the following which were picked at random: "global fatigue", "poor memory", "pains in arms and legs", "headaches", "feeling cranky", "tenderglands", "incontinence", "swollen joints" and "loss of vision". (10)
While the authors presented these to their colleagues as common in mental disorders, readers will recognize their relevance to physical illnesses and in particular to neurological diseases such as ME/CFS. Not only that, but even a well person has the odd "off" day during which he will experience one or more of the listed signs and/or symptoms, and unless the authors of this piece of nonsense come from another planet, that includes them.
Having softened up the medical and general communities since the early 1990s, Hickie was ready to announce the results of his "study" based on the questionnaire (known as the SPHERE), thousands of which had been distributed to 386 doctors' waiting rooms.
On Monday July 16, 2001, the Sydney Morning Herald announced in large, bold letters that "Six in 10 GP patients have mental illness."
This was the result found in "..a ground breaking study of 46,000 patients...[and] Professor Ian Hickie, said the findings showed everyone visiting a GP should be checked for mental illness - even if they were attending for another reason and did not volunteer psychological symptoms."
Much legitimate criticism can be leveled at the questionnaire, not least of which is deception. At the top of the patient's copy, the instructions started with the words: "We would like to know about your general health.." General health, indeed!!
The doctor's copy (or template as it was called) gave two sets of instructions (i) The method by which patients' answers should be evaluated and (ii) at the top of the page in capital letters: "DO NOT PHOTOCOPY THIS PAGE FOR USE WITH PATIENTS."
And no wonder! The 12 sample questions that followed were divided into two columns. The first was headed "Psychological Distress" and the second, "Somatic Distress".
SPHERE stands for "Somatic and Psychological Health Report", and had the real purpose of the questionnaire been honestly stated on the patient's copy, it is doubtful if many would have bothered to fill it in.
The question is, how was this "ground breaking study" funded? Who stood to gain the most from a dramatic increase in the prescribing of psychiatric drugs? We need look no further than the current shenanigans in the US. But the answer in regard to Australia had already been stated.
It came across very clearly in an ABC TV programme, "Too Much Medicine", which was aired on 19 November, 1998.
From the transcript we can see that narrator, Ray Moynihan, made the following point: "Drug companies spend over a million dollars a day pushing their products but they're not just selling pills, they're increasingly promoting the diseases to go with them." (For instance:
Social Phobia which the rest of us know as shyness, and Pervasive Refusal Syndrome diagnosed typically when a child suffering ME does not respond favourably to psychiatric treatment .)
Hickie: "We've not had very good public awareness of the size of mental health issues, nor the size of the problem to deal with.."
Moynihan: ".aren't you..by publicizing such huge estimates, helping build a very large market for those selling cures?'
Hickie: "Yes. I don't see that as a problem at all."
Those who have been on the receiving end of preventable medical error (or should it be preventable medical "error"?) will not be impressed with Hickie 's attitude. The statistics regarding preventable medical error based on hospital records speak for themselves.
(GP figures are not known.)Preventable medical error is (a) the third biggest killer after heart disease and cancer (11) and (b) the cause of a third of diseases and disabilities. (12)
If there is still doubt in the minds of some about the international drive to categorize ME/CFS as a psychiatric disorder, the following must surely dispel it:
(i) In August 2001, the Centre for Diseases Control (CDC) in the USA, announced on their web site, that the University of New South Wales, Australia, had been awarded 82% of the costs to conduct research into "Post-Infective Fatigue: A Model for Chronic Fatigue Syndrome". While this quite rightly specified investigation into "persistent microbial antigens", it also specified investigation into "psychological factors [that] perpetuate physical symptoms after infection" and the evaluation of the "contributions of premorbid and concurrent psychiatric disorders to the persistence of post infective fatigue." One would be hard pressed to find the same requirements for studies into other neurological diseases.
Hickie, Lloyd and Wakefield were the recipients of the research funding which amounted to Aus.$958,289 per annum. This afforded them ample scope to wield the SPHERE questionnaire to the detriment of most of the 60% of patients nationwide who were deemed to be mentally disturbed and, in particular, the section which represents the ME/CFS community.
(ii) The CDC initiated further research into CFS and a transcript from the CDC site (14/03/03) showed that amongst the international participants, Hickie and Lloyd represented Australia. The resulting paper was published in December 2003 and it stated: "We recommend
that investigators use the Somatic and Psychological Health Report (SPHERE) as a screening instrument for potential participants in research studies of CFS." (13)
In the meantime and despite all, the WHO International Classification of Diseases has for the past 40 years, listed ME as a neurological disease and there, we have been assured, is where the organization intends to leave it. (ICD No.10 Ref. G93.3)
In the history of medicine and in particular, psychiatry, there is no shortage of delusions of superiority and the abuse of power has always been present. In 1920, German professor of psychiatry, Alfred Hoch, wrote a book entitled "Permission to Destroy Life Unworthy of Life". His proposals were enacted in 1940 and by 1944, nearly 300,000 "mental defectives" had met their deaths at the hands of Hoch and his colleagues.
Some years ago, Jose M.R. Delgado, Associate Director of Neuropsychiatry at Yale University Medical School, pushed another barrow. "We need a programme of psychosurgery for political control of our society," he proclaimed. "The purpose is physical control of the mind.Man does not have the right to develop his own mind."
Similar views were recorded in the Los Angeles Times on June 25, 1973 in regard to the drug, lithium. A psychiatrist by name of Fieve expressed the opinion that 6 million Americans should be on it. "Other lithium advocates had a still more grandiose and shocking vision - putting everyone in the United States on the drug..How? With lithium in our drinking water." (14)
And then along comes Bush..!
The pattern that has emerged in the last two or three decades is not new,but the greed for power is more ambitious than ever before.The lay community needs to be very vigilant or the day will come when mind altering drugs and electric shock treatment will routinely be prescribed along with our antibiotics and beta blockers.
"I observe the physician with the same diligence as the disease," said one John Donne of whom I know nothing - except that he was a wise man. Consumer, beware!
1 "The Psychiatric Status of Patients with the Chronic Fatigue Syndrome"
Ian Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker. British Journal of Psychiatry (1990). 156, 534-540
2 Australian and New Zealand Journal of psychiatry 1992; 26:249-256
3 BMJ volume 308, 19 March 1994
4 The American Journal of Medicine Vol. 96, June 1994
5 MJA 1996; 154:585-588
6 Australian and New Zealand Journal of Psychiatry 1998; 32: 104-111
7 "Prevalence of Gulf war veterans who believe they have Gulf war syndrome"
T Chalder, M Hotof, C Unwin, L Hull, K Ismail, A David, S Wessely. BMJ 2001;323-476 (1 September 2001)
8 Psychological Medicine, 1999. 29, 863-868
9 Australian and New Zealand Journal of Psychiatry 1999, 33:545-552
10 "What is chronic fatigue syndrome? Heterogeneity within an international multicentre study". Australian and New Zealand Journal of Psychiatry 2001; 35:520-527
11 "Is US health really the best in the world?" B Starfield, MD, MPH. JAMA Volume 284, No.4, 26 July, 2000
12 "Epidemiology of medical error" Saul, Weingart, Wilson, Gibberd, Harrison BMJ Volume 320, 18 March, 2000
14 "Toxic Psychiatry" by Peter Breggan, M.D.
Posted at 21.9.04 by fnqsupport
Monday, August 23, 2004
More CBT/GET propaganda being rolled out by the Barton and Marsh
See the programme of the conference below.
Please see a few of the suggested questions that could be asked.
SUSSEX ME/CFS SOCIETY
(Incorporating KENT ME SOCIETY)
4 Braemore Court Kingsway Hove BN3 4FG
Tel: 01273 778890
Thank you for purchasing the ticket(s) for the Kent Medical Conference being held by the Sussex & ME/CFS Society. The event will take place at Aylesford Priory on the 10th September starting at 2pm. Please find enclosed a map with full directions of how to get to The Friars where the priory is located. You will also find enclosed your unique ticket(s) which you will need to bring with you on the day as the space is limited. The program for the day is as follows:
1.45pm Doors open with light refreshments
2.05pm Welcome by Sussex & Kent ME/CFS Society Introductions
2.10pm Talk by Chris Clark (CEO of Action for ME)
2.30pm Talk by Professor Leslie Findley (Consultant Neurologist at Romford ME/CFS clinic)
3.20pm Break with light refreshments
3.40pm Talk by Mary-Jane Willows (CEO of Association of Young people with ME)
3.45pm Talk by Dr. Mario Vergara (on behalf of Kent & Medway PCTs Steering group for the new specialist NHS ME/CFS Services)
3.55 pm Questions and Answers session for the panel.
4.30pm Closing address and Finish
We hope you enjoy the Conference and we are sure that all attending will find it very useful. If you have any queries please contact Joe Marsh on 01273 778890.
(Programme may be subject to change)
PATRONS Dr Des Turner MP. Sir Andrew Bowden MBE. Elizabeth, Countess of Craven. David Lepper MP
ADVISERS Professor Anthony Pinching. Dr. Keith Hine MD FRCP. Dr Anne Dew MBBS MRCGP. Dr Alan Stewart MB MRCP. Dr Kamal Patel MRCPCH MSc Charity 1082681
1. Why has AfME not held an Annual General Meeting that involves its subscribers since 19996, for the last eight years?
2. Why has AfME not answered the twenty-one questions posed in The AfME Dossier 2004, despite the fact that the Chair of Trustees wrote to say that the matter has been under consideration since March of this year?
3. Why is AfME colluding and sanctioning the fraudulent PACE & FINE psychiatric clinical trials?
For Professor Findley
1. Where are the legions of the lost recovered from ME/CFS since Findley has been playing psychiatric games with ME/CFS sufferers for many a year?
1. Why did AYME refuse to co-operate with the Observer newspaper in and in-depth exposure of the plight of ME/CFS children?
2. Why is AYME co-operating (via one of their medical advisers) with the CBT/GET Harrow & Hillingdon bid?
3. Why is AYME promoting CBT/GET for children when these treatments have not been tested on ME/CFS children and the Chief Medical Officer's Working Group Report states so?
For Dr. Mario Vergara of Kent & Medway PCT
1. Why are the Canadian criteria that have been used for clinical purposes on 25,000 ME/CFS patients worldwide not being used for ME/CFS centres by the Kent & Medway PCT? These are the most up to date clinical criteria in the field and failure to use them is thus considerably more than a medical oversight.
2. Why, instead, are ME/CFS patients being fed into fraudulent psychiatric clinical trials in relation to treatments such as CBT/GET that have been shown in survey after survey (including one from AfME its very self) to damage sufferers?
For Colin Barton & Joe Marsh of the Kent & Sussex ME/CFS Society
1. Do you gentlemen suffer/or have you suffered from mental disorder idiopathic chronic fatigue (F48) rather that ME/CFS (ICD-10 G93.3) neurological brain disease?
2. If the former is the case, is this why you ceaselessly promote CBT/GET that helps sufferers from mental disorder idiopathic chronic fatigue (F48) but that damages ME/CFS sufferers?
Dear friends. These are just a very few of the questions that could be posed.
Posted at 23.8.04 by fnqsupport
Thursday, July 15, 2004
Denial of membership by ME Association
Denial of membership to Suzy Chapman [Carer of young adult with ME, List owner of FreeMEuk and MEinformUK] by the Board of Trustees of the ME Association.
I feel very strongly that the issue of the Board of Trustees' decision to deny me membership of the ME Association needs to be kept in the public domain. I am therefore appending a copy of the paper letter I sent this morning to Dr Charles Shepherd, Company Secretary, ME Association.
A paper copy of my letter to the Company Secretary was CC'd to Ms Christine Llewellyn, Chairman of the Board of Trustees and electronic copies were CCd to: Rick Osman, Tony Britton, Ewan Dale, Diane Newman, Angela Flack, Charles Shepherd and Christine Llewellyn.
Beneath this letter is a copy of the communication I received yesterday (12 July) notifying me that the Board of Trustees have denied my application to become a member of the Association.
(Address and telephone number)
The Board of Trustees
4 Top Angel
Buckingham Industrial Park
Buckingham MK18 1TH
13 July 2004
For the attention of: Dr Charles Shepherd, Acting Company Secretary
with copy to Ms Christine Llewellyn, Chairman
Dear Dr Shepherd,
Re: Denial of application for membership of the ME Association Yesterday I received a letter signed 'for and on behalf of' the Board of Trustees informing me that the Board has declined my application for membership.
I shall require the following questions to be addressed:
1] Are ALL applications for membership received by the MEA's Head Office considered by the Board of Trustees and what is the usual procedure for this? Have there been any changes in these procedures over the last 7 months and when were they first adopted?
2] Was my application considered and discussed at a meeting of the Board of Trustees and entered in the minutes of that meeting? or
3] Was my application considered and discussed by ALL members of the Board using an acceptable method of communication other than through the process of a Board meeting or was this discussed using such a method by SOME members of the Board? or
4] Was the decision to deny my application made under Officer's Action/Chairperson Decision and as such was implemented without the need for consideration by the Board at a meeting of the Board of Trustees? or
5] Was the denial of membership made by a member of staff in the name of the Board of Trustees according to prior instruction and not discussed by Board members either at a Board meeting or by other means, following receipt of the application?
6] What polices and procedures does the Board of Trustees have in place for deciding on an individual's suitability for becoming a member of the Association?
7] What criteria does the Association use to judge if an individual is deemed fit to become a member of the Association? What is the reason or reasons for my application being denied?
8] What right of appeal do individuals have whose applications have been denied, and what is the appeals procedure?
9] Why have I not been informed of the Association's policies and procedures for approving memberships and right to appeal following the rejection of my application?
CC Christine Llewellyn, Chairman
Denial of membership by Board of Trustees, ME Association
On 30th June I sent in an application form for membership of the ME Association together with a cheque for £15.00.
On Monday, 13 July I received the following letter from the ME Association, sent 'Special delivery'.
The ME Association
4 Top Angel
Buckingham Industrial Park
Mrs Susan Chapman
09 July 2004
Dear Mrs Chapman
It is with regret that in this instance the Board of Trustees have declined your application for membership.
We therefore enclose your cheque here with.
pp (indecipherable signature)
Board of Trustees
Posted at 15.7.04 by fnqsupport
Wednesday, July 14, 2004
Advocacy and CFS/ME Associations in America
CFSAC Perspective, Advocacy and the CFIDS Association of America
The CFIDS Association of America (CAA) seems to be more and more out oftouch with the patient community. They had most of their staff/board membersin DC for the weekend for their board meeting and also at the CFSAC meetingBut although their membership and patient support is plummeting and we convey this to the committee and the government, this is what they see atthe meeting. (And from the patient perspective it is difficult to reconcile what this must have cost, since it would probably be safe to assume that theCAA paid expenses for those attending.) Since I made my presentation to the committee, I have learned that according to their 2003 tax forms, they arenow down to just over 5000 dues paying members - which dropped by over 1000 members within one year.
From CFSAC Perspective, Advocacy and the CFIDS Association of America~~~~~~~~~~~~~~~~~~~~
The CFIDS Association of America (CAA) seems to be more and more out of touch with the patient community. They had most of their staff/board members in DC for the weekend for their board meeting and also at the CFSAC meeting. But although their membership and patient support is plummeting and we convey this to the committee and the government, this is what they see at the meeting. (And from the patient perspective it is difficult to reconcile what this must have cost, since it would probably be safe to assume that the CAA paid expenses for those attending.) Since I made my presentation to the committee, I have learned that according to their 2003 tax forms, they are now down to just over 5000 dues paying members - which dropped by over 1000 members within one year.
But from some comments and follow-up reports, it appears they are trying to sway patient positions - there isn't going to be a name change and it really wasn't a good idea anyway so forget about it and move on. So they are trying to convince everyone, it's just the name - yet patients know how damaging the name CFS has been, and saying it doesn't matter is not true: Dr. Jason's attribution study proved that it does matter. Patients do know better.
Yet in spite of the spin, it is difficult to accept as this was their position and statement on their website up until last fall -- when the committee voted against it at the December meeting:
"Effective name change leadership: An Association update
Our commitment is unequivocal: Leaders of The CFIDS Association of America steadfastly support a name change for CFS. The Association recognizes the stigma associated with the term "chronic fatigue syndrome" and the damage that the name itself does to patients striving for understanding and support from family, friends and health-care providers. More recently the Association has led responsible and responsive efforts to make progress on a name change and has supported others' constructive efforts."
After years of their professed commitment to a name change -- well now it's not a good idea -- and there isn't going to be one -- ?? perhaps because they refused to actively support it and the expressed demands of the constituents they purport to serve. Patients have been extremely unified in this area and the CAA now seems to be trying to manipulate opinion on this. Their role continues to be dubious and cause for concern.
It seems overall that regarding the name change, despite the committees claims to the contrary, the fix was in anyway, considering how swiftly it was over. And it appears that Kim Kenney McCleary was involved, as she was asked at the September CFSAC meeting by Dr. Bell to help the committee develop a response to the issue. Dr. Fields has been overtly committed to openness and transparency and encouraging open deliberations and seems surprising that he allowed this regardless.
Some say that the CAA has been very effective. Well they have - as a business - not at anything that has significantly helped patients. Patients are a commodity to run the business, while they forge careers, collect large salaries and take paid trips to DC for the weekend. There is the perception that they have power, and they may to some degree, but is more of an illusion than a reality. They know where the power is and are good at attaching themselves to it, but again, power without influence does not accomplish what we need in the patient community.
So the CAA's concern is now to establish CFS as a "serious public health concern." No one would argue to the contrary, but the main focus is on more money - not how it is being utilized (i.e., for the CDC to study fatigue and open fatigue clinics while the other research centers are closing???). But since their patient base is dwindling, they in fact depend on government money, so the more the government - the more they can keep getting from the CDC.
That million dollar CDC/CAA education campaign has hardly been well received by the patient community and indeed again seems much more effective as free advertising for the CAA courtesy of our tax money, which they do need to attract more members, as they still need to have the illusion of being a patient organization. The patient community has asked the CAA and the committee how this award was determined and who is involved and what oversight there is as to content and implementation. It was said to be competitive and collaborative but have seen nothing that would indicate that this is the case. And we do not accept this as CDC's commitment to "educating," especially physicians, about the illness, as this has fallen short of acceptable expectations.
Since these awards are made on a yearly basis, they should be discontinued until there is clarification as to the content and oversight, as this is our tax money. Please contact the CDC and the following and request that this CDC/CAA education contract be terminated until these matters are satisfactorily resolved. If not then we will request Congressional action.
FM CFS/CFIDS/ME and Related Illnesses/Disorders
Posted at 14.7.04 by fnqsupport