| MYALGIC ENCEPHALOMYELITIS (ME) the impact on sufferers: is health policy in Scotland on the right path? 21st March 2005
This is a Briefing Paper that has been sent out to all Scottish MSP's via the Cross Party Group
The clinical profile of ME is unique and does not mimic any other illness.
- Post-exertional malaise is a key defining feature.
- Patients experience a considerable exacerbation of symptoms which may precipitate a significant relapse, even after minor amounts of physical exertion.
- Mental activity can also exacerbate symptoms.
The sole source of evidence which would support behavioural interventions is research studies aiming to address the needs of patients with unexplained chronic fatigue, not ME.
The evidence for GET in respect of ME is disputed. (Appendix 3)
- In one survey of severely affected patients, 8 out of 10 reported that their illness had been made worse by graded exercise.
- Some of these patients were not severely affected before graded exercise therapy
. "no other treatment (sic) – pharmacological or non-pharmacological – received such negative feedback in patient surveys" ( Dept. of Health, 2002, p47)
- Biomedical research evidence supports the inappropriateness, and at worst harmfulness, of graded exercise to patients with ME.
- It is unacceptable that CBT may be applied in ways which encourage ME sufferers to believe that their illness does not have a biomedical basis.
- Duty of care
is called into question if behavioural interventions are the only approaches offered to ME sufferers.
Vagal tone is reduced during paced breathing in patients with the chronic fatigue syndrome. Sisto SA, Tapp W, Drastal S, Bergen M, DeMasi I, Cordero D, Natelson B. Clinical Autonomic Research 1995; 5(3): 139-43.
‘Using this method, although there was significantly less vagal power in the sitting versus the standing postures for both groups, the overall vagal power was significantly lower (p < 0.034) in the CFS group versus healthy controls. Vagal power was also significantly lower (p < 0.01 to p < 0.05) at all breathing rates in both postures except while standing and breathing at 18 breaths/min.
Exercise responsive genes measured in peripheral blood of women with Chronic Fatigue Syndrome and matched control subjects. Whistler T, Jones JF, Unger ER, Vernon SD.Journal: BMC Physiol. 2005 Mar 24;5(1):5 PMID: 15790422
‘Exercise-responsive genes differed between CFS cases and controls. These were in genes classified in chromatin and nucleosome assembly, cytoplasmic vesicles, membrane transport, and G protein-coupled receptor ontologies. Differences in ion transport activity/ion channel activity were evident at baseline and were exaggerated after exercise as evidenced by greater numbers of differentially genes in these molecular functions.’
Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with ME/CFS claims 2003, Stephen Ralph
The insurance companies known to be involved in ME/CFS claims include, in addition to UNUM, Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life and Permanent Insurance, and as Re-insurers, the massive Swiss Re (not the same as Swiss Life). Swiss Re are currently building a huge circular eyesore in London which has been dubbed the "gherkin". These insurance companies all seem to be involved in RE-INSURANCE; for example, Norwich Union uses Swiss Re and psychiatrist Peter White is one of the Chief Medical Officers for Swiss Re. Their other "CFS experts" are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent co-author with Wessely who works in the same department) for the insurers. There seem to be two ways in which claims are underwritten between insurers and re-insurers: either the insurers agree to pay claims up to a pre-determined cut-off limit, after which the re-insurer becomes liable, or else the insurer and the re-insurer agree from the outset to share the costs of a claim.
This means that there is little hope of an ME claim succeeding, because both the insurers and the re-insurers all use the Wessely School psychiatrists to inter-refer claimants with ME/CFS. Given that insurers can refuse to pay out on claims until the claimant with ME/CFS has undergone a "rehabilitation" programme arranged by the insurer, this must surely result in a major conflict of interests because Peter White, Michael Sharpe and Wessely’s assistant Trudie Chalder (a former mental nurse who obtained a PhD and who seems often to be used as a grant front by Wessely) are the beneficiaries of the MRC’s latest £2.6 million grant to "strengthen" the very weak evidence that cognitive behavioural therapy (CBT or "brain-washing") and forced "rehabilitation programmes" (graded exercise therapy or GET) actually work for those with ME/CFS, but the clear evidence is that they do not, and are in fact harmful.
THE UNDESERVING ILL - A WARNING - by John Sayer
It is my belief that the current - almost frenzied - campaign to psychologise M.E. and similar conditions is part of this propaganda and represents a dress rehearsal for the wider application of the psychosocial classification of a new "underclass" of "the undeserving ill", stripped of some of the very rights the Second World War was supposedly fought for by the Allies.
Outrageous job description for ME/CFS nurse therapist by John Sayer
These job descriptions relate to a philosophy - ALREADY IN PLACE - of subjecting "CFS" sufferers to psychotherapy designed to "prove" to them that they are simply perpetuating their own illness through aberrant belief systems.
At the risk of sounding patronising, it is time to stop considering columnists like Victor Lewis-Smith, Julie Burchill and Stacia Briggs as some kind of harmless and irrelevant joke. They are part of the propaganda machine (whether they intend to be or not) that props up this tyrrany.
THE TRAVESTY OF SO-CALLED "M.E. TREATMENT" by John Sayer
Science or Psychology? Margaret Williams, 29th March 2005
"One interesting correlate of this study was the finding that the complement pathway showed significant differences between (ME)CFS and control subjects after exercise. This has been reported previously by Sorensen at al (J Clin Immunol 2003:112:397-403). Complement activation was identified as an ontology that was significantly different between (ME)CFS and control subjects after exercise".
Why does the UK ME/ICD-CFS community have to rely on Dr Derek Enlander from the US to write to Prime Minister Blair and inform him that: "Over the past several years there is a tragedy in the manner in which the NHS and British politicians treat ME/CFS. Under your watch, millions of pounds have been misspent supporting ill-founded psychiatric notions of this disease. The cognitive behavioural programme that your government has funded is inherently flawed, in fact does harm. There is NO evidence of treatment efficacy in behaviour modification or paced therapy in this disease.
"No Total Rest" prescription is irrelevant to acute ME From Ciara MacLaverty, June 2005
It's been almost 20 years since I was first diagnosed with ME. The controversies surrounding causes and management of ME have raged through the decades but one fact remains constant: I took a virus in 1987 and I have never had a day's full health since then. My health appears to be permanently damaged. Ditto hundreds of thousands of sufferers.
I want to express my concerns over the widely touted dictate that "Total and/or Prolonged Rest is counter-productive in ME." Even some of the moderates, who are firmly in the "ME is a serious physical illness" camp, can advocate this position. The "No Total Rest" (NTR) approach simply does not apply to my experience of severe ME.
The FINE Trial — thanks a £million? MERGE
Heralded as offering a "promising new treatment" for people with severe ME, the FINE (Fatigue Intervention by Nurses Evaluation) Trial is presently recruiting staff and will report its conclusions in 2008 or even later. Costing £1,147,000, the trial is funded by the UK's Medical Research Council with a grant to Dr Alison Wearden, a psychologist based in the Department of Psychology, University of Manchester, and colleagues in Liverpool (Department of Psychiatry) and Manchester (Department of Psychiatry). In the preliminary supporting documentation, the FINE Trial is a described as a "randomised controlled trial of nurse-led, self-help treatment for patients in primary care... Referred patients will be randomly allocated to one of three treatment groups: (a) nurse-led self-help, (b) supportive listening or (c) GP treatment as usual." Patients will be visited in their own homes, and before "treatment" commences qualitative interviews will be conducted to explore"patient views on illness causation, beliefs about chronic fatigue, expectations of intervention, and previous experience of treatment and doctor-patient relationships". At the same time, the patients' GPs will be asked about their experiences of and attitudes towards patients with ME. After 20 weeks of "treatment", patients will be assessed for a variety of outcomes, and again after one year.
What is the "promising new treatment" on offer to the severely-ill patients? Called "nurse-led self-help" or "pragmatic rehabilitation", the approach "is designed to increase activity and challenge dysfunctional illness beliefs" (Powell et al, 1999), and includes elements of the cognitive behavioural and graded exercise therapy championed by those psychiatrists and psychologists who promote the "biopsychosocial" model of ME. The basis of this model is that "once an illness has started, its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process" (CMO Report 2002). Pragmatic rehabilitation, we are told, will help patients to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation. In support of its usefulness for the most severely ill patients, a single report in the scientific literature (Powell et al, 1999) describes two wheelchair-bound patients who had dramatic improvements in health following the pragmatic rehabilitation regimen now being rolled out to larger groups of patients as a full-scale MRC-funded trial. (Two other seemingly relevant reports in the scientific literature are, in fact, small pilot studies that refer to inpatient treatments within psychiatric wards, vis, Chalder et al 1996 and Essame et al 1998.)
This treatment is not new and hardly promising on the basis of two case reports. But will some people benefit and report improvement of a sort? Well, probably — given that the quality of life of us all (well or unwell) can be improved by changing some of our beliefs and coping behaviour, and increasing our activity levels. But as the authors of the new Canadian definition of CFS/ME make clear, the question is whether such treatments (generally recognised not to be a cure for patients' physical illnesses or suitable for everyone with ME) add anything to what is available in the general medical setting, and hence whether the taxpayer-spend of £1,147,000 (including £411,000 in NHS costs, very useful for oiling the wheels of academic departments) is value for money. And furthermore, there are considerable doubts about whether the trial will address the central problem of ME.
For instance, will each severely-ill person on the FINE trial be given a comprehensive medical assessment to identify somatic (physical) symptoms and signs? Autonomic disturbances, seizures, frank muscle weakness, neuroendocrine disturbances (like sweating episodes), recurrent flu-like symptoms — will they be recorded over the 70 weeks? Symptoms like musculoskeletal pain, neurocognitive problems and sleep dysfunction — will they be comprehensively assessed? Will patients receive treatment for any of these? Or will these signs and symptoms of ME be ignored while the patients' beliefs are explored by nurses steeped in the biopsychosocial culture of their paymasters?
In vivo magnetic resonance spectroscopy in chronic fatigue syndrome. Chaudhuri A, Behan
‘Research data on magnetic resonance spectroscopy (MRS) of muscles and brain in CFS patients suggest a cellular metabolic abnormality in some cases. 31P MRS of skeletal muscles in a subset of patients indicate early intracellular acidosis in the exercising muscles. 1H MRS of the regional brain areas in CFS have shown increased peaks of choline derived from the cell membrane phospholipids. Cell membrane oxidative stress may offer a common explanation for the observed MRS changes in the muscles and brain of CFS patients and this may have important therapeutic implications. As a research tool, MRS may be used as an objective outcome measure in the intervention studies. In addition, regional brain 1H MRS has the potential for wider use to substantiate a clinical diagnosis of CFS from … unexplained chronic fatigue.’
Specific oxidative alterations in vastus lateralis muscle of patients with the diagnosis of chronic fatigue syndrome Stefania Fulle (a), Patrizia Mecocci (b), Giorgio Fano (c), Iacopo Vecchiet (d), Alba Vecchini (e), Delia Racciotti (d), Antonio Cherubini (b), Eligio Pizzigallo (d), Leonardo Vecchiet (c), Umberto Senin (b) and M. Flint Beal (f).
From these results we hypothesize that in CFS there is oxidative stress in muscle, which results in an increase in antioxidant defenses. Furthermore, in muscle membranes, fluidity and fatty acid composition are significantly different in specimens from CFS patients as compared to controls and to patients suffering from fibromyalgia.
These data support an organic origin of CFS, in which muscle suffers oxidative damage.
Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome.
‘The authors attempted to confirm the consistent report by patients with the CFS of delay in recovery of peripheral muscle function after exercise. They tested the quadriceps muscle group of 10 patients and 10 controls. Recovery was prolonged in the patient group, with a significant difference between the two groups after exercise and after 24 hours. These findings support the clinical complaint of delayed recovery after exercise in patients with CFS.’
Concerns Regarding Exercise
Despite deep divisions within the ‘CFS/ME Working Group’ regarding graded exercise, the published report to the Chief Medical Officer endorsed this approach as a strategy "potentially beneficial in modifying the illness". The Cross Party Group on ME has serious concerns regarding this recommendation, and the way in which it has been interpreted. C BT can be a helpful management technique, as acknowledged in other illnesses e.g. cancer, but there are concerns that, in relation to M.E., it has come to mean motivating people to participate in ‘Graded Exercise type’ programmes. Also, CBT does seem, uniquely for M.E./CFS, to be being suggested as a ‘treatment’ and regarded as sufficient in itself, rather than an accessory to specific treatment of the illness and specific symptoms.
Time to put the exercise cure to rest? by Dr Elizabeth Dowsett
There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion 1. And, on follow up over decades (rather than weeks or months), the average person so disabled is found to be functioning (as a student, employee or parent for example) dangerously near their [activity] limits. The prescription of increasing exercise is such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive.
Issues related to severe ME and the involvement of the UK Psychiatric lobby By Greg Crowhurst, September 3rd 2005
The psychiatric lobby has been awarded £8.5 million from the Government and £2 million from the Medical Research Council (MRC) to implement the PACE trials and to set up 12 centres across the country", where, according to one job description (2005): "severely disabled, fatigued patients and relatives (will be required ) to change perpetuating illness behaviour and perform a self-managed activity programme, regulate disturbed sleep patterns and modify predisposing personality style." [16].
The number of patients who actually benefit from CBT and GET (Graded Exercise Therapy) in trials, is less than 10% and a large number of patients get significantly worse [21]. If anyone benefited from one of these trials they probably had some form of Chronic fatigue, but they did not have ME [22].
CFS severity is related to reduced stroke volume and diminished blood pressure responses to mental stress Arnold Peckerman, John J. LaManca, Sharon L. Smith, and Benjamin H. Natelson; NJ CFS Research Center, University of Medicine and Dentistry of New Jersey
‘an observation was made that in patients with CFS, a lower stroke volume was highly predictive (r = -.72, p < .001) of illness severity. When divided into severe (N = 11) and less-than-severe (N = 10) groups, the severe CFS patients were found to have a lower stroke volume and cardiac output (p < .05) relative to a more moderate CFS group across three different postures.’
‘These findings suggest the possibility of a low flow circulatory state in the most severe cases of CFS. In patients with a less severe form of CFS, a diminished blood pressure response to a cognitive-behavioral (speech presentation), but not to an aversive-sensory (the cold pressor test) stressor may indicate a defect in the higher cortical modulation of cardiovascular autonomic control. In this latter group, situations may arise where a demand for blood flow to the brain may exceed the supply with a possibility of ischemia and a decrement of function.’
[Note that the so-called 'severe' patients in this study are in reality only mildly or possibly moderately ill]
Is Graded Exercise Safe for People with M.E.?
It is in relation to the endorsement of exercise that the urgent need to subgroup patients appropriately is most pressing. All interventions offered to any patient population should be as safe as possible. Lack of understanding of aetiology or cause does not mean that safety cannot be considered. The ethics of this in the case of ME/CFS are particularly relevant given the wealth of research findings which raise substantial questions about the safe prescription of exercise. Given the acceptance that the diagnosis of CFS currently encompasses a heterogeneous population, there appears to be a considerable lack of effort within clinical practice and at health policy level to take account of research indicating that the health of some patients is adversely affected by exercise.
The widespread promotion of graded exercise - and cognitive behavioural therapy aimed at increasing activity levels - has resulted in these behavioural interventions being prescribed in good faith by General Practitioners and other clinicians. However, the extent to which practitioners have knowledge of the internationally reported contra-indications for some sufferers within the ‘chronic fatigue syndrome’ banner is questionable. There has been virtually no attempt to subgroup those being referred to local services for these interventions. GPs have neither been provided with guidance as to which ‘CFS’ patients are likely to benefit from exercise, nor been advised on the need to investigate for the presence of physiological factors which would contra-indicate advising a patient to exercise.
Suggested urgent action
- GPs and other medical personnel should be supplied with the diagnostic and treatment protocol for ME/strictly defined CFS which is now available.
[1]
- Every possible precaution must be taken to ensure that all medical services proposed for patients currently subsumed under the heterogeneous banner of chronic fatigue syndrome, including behavioural interventions, are safe. This would include provision of advice on contra-indications.
- Careful analysis and due consideration should be given to the findings of patient surveys and the numerous research studies which have indicated physiological abnormalities implying abnormal response to exercise, including studies suggesting that the condition of some patients is made considerably worse by exercise.
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
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?
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