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Rapid Responses to:
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PAPERS: Epidemiology of
chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15
year olds: cross sectional study |
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Rapid Responses published:
![[Read Rapid Response]](Rapid%20reponses%20to%20epidemiology%20in%20Me%20of%205-15years%20old_bestanden/image015.gif){kind=small}
Impact of CFS
in Children
Chris Clark (19 September 2003)
Another
shockingly uncontroversial Wessley publication: something must be done!
John F Morgan (19 September 2003)
Re: Another
shockingly uncontroversial Wessley publication: something must be done!
Ellen Goudsmit (20 September 2003)
Another
shockingly pointless Wessley publication: something must be done!
N Portman, n/a (21 September 2003)
A waste of
funding
Gurli Bagnall (21 September 2003)
![[Read Rapid Response]](Rapid%20reponses%20to%20epidemiology%20in%20Me%20of%205-15years%20old_bestanden/image016.gif){kind=small}
Young People
need a voice of their own.
MaryJane Willows (21 September 2003)
Endocrinologists,
too, should review manuscrips on chronic fatigue syndrome
Riccardo Baschetti (22 September 2003)
Some very
questionable conclusions and results about ME/CFS in children and adolescents
Charles B Shepherd (22 September 2003)
'first do no
harm'
Paul Lynch (23 September 2003)
Please help
our children
Jane Bryant (23 September 2003)
Interests
Douglas T Fraser (24 September 2003)
Chalder et
al's worrying unawareness
Jane C Colby (24 September 2003)
What Utter
Bollocks!
Richard Simpson (25 September 2003)
Re: Chalder
et al's worrying unawareness
Suzy Chapman (25 September 2003)
A Plea for
Research Co-operation
Graham & Ann Robertson (25 September 2003)
Re: A Plea
for Research Co-operation
Paul Lynch (25 September 2003)
The social
myth of mind over matter
Angela P. Kennedy (26 September 2003)
The Parent
Must Not Close His or Her Mind to All Possible Factors In Regard To Treatment
Dr P V Finn Cosgrove (27 September 2003)
Behind the
times?
Jane Bryant (27 September 2003)
The Doctor
must not close his or her mind to all possible factors in regard to treatment
Angela P. Kennedy (28 September 2003)
Re: The
Parent Must Not Close His or Her Mind to All Possible Factors In Regard To
Treatment
Richard Simpson (28 September 2003)
Re: The
Parent Must Not Close His or Her Mind to All Possible Factors In Regard To
Treatment
Suzy Chapman (29 September 2003)
The
prevalence rate found wasn't that low compared to studies of adults
Tom P Kindlon (29 September 2003)
Re: The
Parent Must Not Close His or Her Mind to All Possible Factors In Regard To
Treatment
Ann Robertson (30 September 2003)
Re: Re: The
Parent Must Not Close His or Her Mind to All Possible Factors In Regard To
Treatment
James Taylor (1 October 2003)
Ever tried
this on cattle ?
Arthur J. Finnie (4 October 2003)
Recovery from
CFS/ME
Denis W Scadeng (5 October 2003)
Anxiety
Unrecognised, Untreated and Unrelieved
Dr P V Finn Cosgrove (5 October 2003)
Re: Anxiety
Unrecognised, Untreated and Unrelieved
Gerard T O' Brien (6 October 2003)
Re: The
prevalence rate found wasn't that low compared to studies of adults
Tom P Kindlon (27 October 2003)
Epidemiology
of chronic fatigue syndrome
Trudie Chalder, Robert Goodman, Simon Wessely and Matthew Hotopf (4 November 2003)
Re:
Epidemiology of chronic fatigue syndrome
Jane Bryant (9 November 2003)
Quality or quantity.
Ellen Goudsmit (9 November 2003)
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Chris
Clark, Send
response to journal: Email Chris Clark |
Dear Sirs Impact of CFS on children We entirely endorse the need for epidemiological research. There is an enormous need for research into ALL issues, as identified by the Medical Research Council in its strategy, and decision to “highlight” the illness. Whilst we would question the accuracy of a study based on surveys and telephone interviews alone, we are not surprised that the finding was that relatively few children get M.E. But as the researchers have themselves said, the impact on children and their families is however dramatic and the number of school days lost is significant. We note that the study measures whether children have M.E. against strict research based criteria, rather than clinical criteria used by doctors when diagnosing the illness, and would question whether the numbers found were as a consequence under-estimated. We would question whether this is a factor behind the difference found in labelling. To have been of real value, the researchers might have asked why parents labelled their children as having M.E. Is it possible for example that they labelled them as having M.E. because this is what was diagnosed by their GP or based on information given by other health professionals? Many parents and children will be distressed by the report of “a strong association with psychiatric disorder” and we would have wished that this could have been explained better. This was no more than “an association” not a comment on the cause, as is pointed out by the authors. Indeed it is hardly a surprise that families affected by this devastating and mysterious illness can over time become depressed and anxious. Equally it is no surprise that parents become concerned about their children’s symptoms and express such concern, nor that the children themselves might make light of it. Overall this begs more questions than it answers and merely underscores the need for more research, particularly into the causation and treatment of M.E. Yours faithfully Chris Clark Chief Executive Action for M.E. Competing
interests: None declared |
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John
F Morgan, Send
response to journal: Email John F Morgan |
Dear Sirs While I endorse the findings of Wessley and his followers, I remain shocked and disgusted that your journal permits a psychiatrist to study this condition. His findings may be uncontroversial and scientifically rigorous, but the implication of his professional affiliation is a slur on those who labour under the stigma of that diagnostic label, appropriated by so-called mental health experts for their own ulterior motives. Can the esteemed British Medical Journal apply no option of public humiliation to this paper on these grounds alone? I am sure that others will join these 'rapid responses' in a campaign of this nature. Surely I am not alone? Yours faithfully John F Morgan Competing
interests: None declared |
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Ellen
Goudsmit, Send
response to journal: Email Ellen Goudsmit |
I concur with my colleague Dr Morgan that we mental health professionals should be barred forthwith from studying chronic fatigue syndrome (CFS). Let's give someone else a go. However, unlike my colleague, I'm would not describe the study by Chalder et al as 'scientifically rigorous'. For example, the authors did not state if the children were medicallly examined. One cannot diagnose illnesses like CFS just by counting symptoms. The lack of concordance between reports of 'ME' and the criteria for CFS is as expected. If one uses the London criteria for ME (1), then perhaps only 20% of patients with CFS also meet criteria for ME. They are that different. In the past, patient groups recognised the differences between CFS and ME. The literature described ME, and therefore patients were able to form a reasonably accurate opinion. The Report of the Working Group advising the CMO also included a good description of ME. So if the parents who were interviewed for this study were clued up, and the children belonged to organisations like the Tymes Trust, one would indeed see a significant mismatch between their reports and those of the doctors checking for CFS. The cardinal difference is in the nature of fatigue. In ME, the fatigue is closely linked to exertion and is alleviated to a degree by rest. According to the criteria, patients not only experience significant muscle fatiguability following trivial exertion but there is also a marked delay in the recovery of muscle power after exertion ends. The fatiguability tends to be immediate, but it is not unusual for individuals to report an exacerbation of fatigue and other symptoms a few hours or even days later. To diagnose CFS, patients need only to report persistent or relapsing fatigue which is not the result of ongoing exertion, which is not substantially alleviated by rest and which has resulted in a reduction in previous levels of occupational, educational, social and personal activities. There is also a requirement for four symptoms out of a list of eight, but most of these are non-specific and experienced by many members of the general population. Their relevance remains unclear. As a general rule, if patients improve following gradual increases in activity without a marked exacerbation of symptoms, then do not have ME. By definition. Positive responses to graded activity suggest other causes, such fatigue due to lack of fitness, poor diet or chronic stress. As the criteria for CFS do not require a link with trivial exertion, and post-exertional fatigue is a broader concept than a prolonged delay in the recovery of muscle strength, they are not suitable to diagnose ME. Consequently, it is not appropriate to compare reports of ME against the criteria for CFS. Most researchers specialising in fatigue syndromes are aware of the differences between the definitions for ME and CFS. However, there seems to be a tendency to 'lump' the disorders together, on the assumption that any differences are of no clinical significance. For an orthodox scientist like myself, that is premature. After ten years of discussions, we really should test these assumptions, rather than take them as read. Which leads us back to the role of psychiatrists. It is clearly not an issue which interests them. What we need is a fresh approach. An old-fashioned researcher with an eye for detail and a strong stomach. Someone who realises that fatigue is a symptom, not an illnes. (1) Dowsett, E., Goudsmit, E., Macintyre, A and Shepherd C. The 'London' criteria. Diagnostic criteria for the selection of subjects for research into ME/PVFS. Action for ME. 1973. Footnote: Apart from the presence of exercise-induced fatigue, the London criteria require: 2. Impairment of short-term memory and loss of powers of concentration, usually coupled with other neurological and psychological disturbances such as emotional lability, nominal dysphasia, disturbed sleep pattern, disequilibrium or tinnitus 3. Marked fluctuation of symptoms, usually precipitated by either physical or mental exertion (see above). For research purposes, the symptoms should have been present for at least six months and be ongoing. This is not required for diagnosis in a clinical setting. Competing
interests: Mental health professional who has studied CFS and ME. |
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N
Portman, Send
response to journal: Email N Portman, et al. |
John Morgan's spoof rapid response can be interpreted in one of two ways. On the one hand he could be saying that after a string of controversial publications it is a shock to see Simon Wessley publish one that is not controversial. On the other hand his response might simply be a crude attempt to ridicule those patients who do not share Simon Wessley's enthusiasm for his essentially psychologically based approach to researching and treating ME. As Dr (Mr?) Morgan appears to be a British psychiatrist who may actually know Simon Wessley personally, I strongly suspect the latter. Actually I agree with Dr Morgan, the study is essentially uncontroversial. But ironically therein lies the problem. It is uncontroversial precisely because it tells us absolutely nothing new about this illness. Let's look at the findings: * The study found a strong association between psychiatric disorder and a diagnosis of ME or CFS. Well forgive me if I am underwhelmed by this revelation! You would almost certainly find this association with any chronic debilitating illness especially one of unknown aetiology with no effective treatment or cure. * The study also found that CFS is relatively rare amongst children. At first glance this appears to be a significant finding. However, as Chris Clark pointed out, the various definitions of CFS or ME are designed primarily for researchers trying to find the cause or effective treatments for the disease. Many of the children diagnosed with non-CFS fatigue may actually have a mild form of CFS and share the same underlying pathology as those diagnosed with CFS. I believe that the results of any epidemiological studies will have to be treated with extreme caution until a reliable biological marker has been found for this illness. Time after time in surveys carried out by self help groups and ME charities, patients ask for more research to be done into the aetiology of ME. What IS controversial is that so little research of this nature is actually being done in the UK. Competing
interests: None declared |
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Gurli
Bagnall, Send
response to journal: Email Gurli Bagnall |
The paper was entitled “Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5 – 15 year olds….” The study was described by the authors as “…part of a larger study, carried out in 1999 by the social survey division of the Office for National Statistics to find out the prevalence of mental disorders in children aged 5-15.” The question that arises is, what have mental disorders got to do with ME or the CFS by which it is sometimes known? Nothing according to the CMO (who compared it to motor neurone disease and MS a couple of years ago), and the WHO which classifies it as a neurological disease. The study was based on one question: were the children “feeling more tired and worn out than usual”? Being tired and worn out has the same significance in ME that “being tired and worn out” has in cancer, heart disease, motor neurone disease etc. etc. Nevertheless, as if fatigue were the only symptom, the authors neglected to mention the many others that cause much discomfort and pain. To confound us even further, the answer to the question was all the authors needed to ask a few more and determine (a) “the prevalence of mental disorders in children”; (b) Maternal psychological distress [which] was associated with parental report of myalgic encephalomyelitis or chronic fatigue syndrome” and (c) that “Symptomatic fatigue in children is common, but chronic fatigue and chronic fatigue syndrome are relatively rare……… Cases where children are labelled as having myalgic encephalomyelitis or chronic fatigue syndrome are even less common. Given the small numbers, the results obtained in the subsequent analysis cannot be precise.” Paediatrician, Nigel Speight, was able to be much more precise when he spoke at the Third International Clinical and Scientific Conference in Sydney in 2001. “ME/CFS accounts for the loss of 89 academic years which represents 1.8 years per child. This is the highest school loss for medical reasons in the UK.” So much for "small numbers". For those interested in the reality, “Who will protect the children?" is a video which covers the segment of the conference that dealt with children. It can be obtained from: The Alison Hunter Memorial Foundation, PO Box 2093, Bowral NSW 2576, Australia. (Alison Hunter was struck down with ME as a child. She battled the disease bravely for a number of years, but in the end, it killed her.) Competing
interests: None declared |
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MaryJane
Willows, Send
response to journal: Email MaryJane Willows |
The 2,500 young members of the Association of Young People with ME (AYME) and their families, along with thousands of others are struggling to cope with this serious and debilitating illness. Whilst we are desperate for research in all areas, it is difficult to believe that this is a step in the right direction; it leaves most questions unanswered and raises many more. We are very concerned about the wording, “strong association with a psychiatric disorder”, as this may be easily misinterpreted. My understanding is that the research indicated no more than “an association.” Many people who suffer from long term debilitating illnesses have understandably low periods, yet manage to remain cheerful and optimistic showing remarkable strength of character. Testimony to this, are the 300 young member volunteers belonging to AYME, who run the charity’s membership services on behalf of other sufferers. We would also take issue with the rather patronising questions about feeling, “more worn out and tired than usual.” This may be answered by those more mildly affected, but doesn’t come close to the intense and disturbing physical symptoms felt by those in the more severe category. These young people are unable to hold a phone, let alone discuss whether they are ‘more tired than usual’. This research was undertaken through questionnaires and telephone interviews, using the same research based criteria as for adults, it was not supported by any clinical diagnosis. However, it has highlighted the need for significant research to be carried out into the causation of ME, leading to its effective treatment, in particular for the significant minority groups of children and young people, and those who are severely affected. To publish research such as that published by Wessley will lead to additional distress for many sufferers and professionals who have struggled for years to overcome the myths surrounding what is a very physical illness as recently recognised in the Chief Medical Officer’s Report (2002). Organisations such as ours, who deal with children and young people every day, see a far broader picture than that mentioned in this study. We do not see the psychiatric disorders that are spoken of, only the distress of our young people being told that they have one. Unfortunately we do not have the funding to produce research paper after paper, but that doesn’t mean to say our young patients don’t have opinions about their illness and what helps them to manage it in a positive way. MaryJane Willows (CEO AYME) Competing
interests: None declared |
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Riccardo
Baschetti, Send
response to journal: Email Riccardo Baschetti |
As someone whose chronic fatigue syndrome (CFS) symptoms are suppressed most effectively since 1994 by drugs for Addison’s disease, a classic endocrine disorder, I believe that Chalder and colleagues’ study [1] should have been supervised by an endocrinologist. Unfortunately, their article increases the long list of papers on CFS that were prepared almost solely by psychiatrists and/or psychologists. Such an autarchical overrepresentation should be discouraged by medical journals, because it unavoidably tends to result in bias and omissions, which weaken the validity of articles on CFS. For example, Chalder and colleagues [1] refer to “a strong association” between psychiatric disorder and CFS, but fail to note that this link may simply reflect the organic abnormalities of CFS. Had an endocrinologist supervised their article, this specialist would have probably reminded them that all the psychiatric symptoms of CFS also characterize Addison’s disease [2], a purely physical condition. As has been pointed out "organic mental disorders due to Addison’s disease may resemble other psychiatric illnesses" [3]. CFS shares 42 clinical features with Addison’s disease [2, 4, 5], including chronic fatigue and all the physical signs and symptoms, neurocognitive dysfunctions, depressive complaints, and sleep disturbances listed in the diagnostic criteria for CFS [2, 4]. This similarity between CFS and Addison’s disease mirrors their shared adrenal abnormalities, namely, hypocortisolism, impaired adrenal cortical function, reduced adrenal gland size, antibodies against the adrenal gland, and deficiency of dehydroepiandrosterone sulphate [2, 5], which is secreted from the adrenal glands. CFS and Addison’s disease also share several gastrointestinal symptoms and many abnormalities of heart, circulation, liver, blood, and muscles [2, 4]. In view of the tens of clinical features that CFS shares with a typical endocrine disease, the BMJ and other biomedical journals should include at least one endocrinologist among the reviewers of manuscripts on CFS. [298 words] 1. Chalder T, Goodman R, Wessely S, Hotopf M, Meltzer H. Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds: cross sectional study. BMJ 2003;327:654-655 (20 September). 2. Baschetti R. Chronic fatigue syndrome: a form of Addison’s disease. J Intern Med 2000;247:737-739. 3. Johnstone PA, Rundell JR, Esposito M. Mental status changes of Addison’s disease. Psychosomatics 1990;31:103-107. 4. Baschetti R. Chronic fatigue syndrome, decreased exercise capacity, and adrenal insufficiency. Arch Intern Med 2001;161:1558-1559. 5. Baschetti R. Phantom lymphadenopathy. An association with chronic fatigue syndrome. Postgrad Med J 2003;79:185. Competing
interests: None declared |
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Charles
B Shepherd, Send
response to journal: Email Charles B Shepherd |
Editor - At a time when the Department of Health has announced £8.5 million of funding to develop new services for people with ME/CFS, there is clearly a need for some sound epidemiological data on the incidence and prevalence of this condition. But many of the key observations and conclusions obtained from the study by Chalder et al, which was based on a larger one that was primarily designed to assess the prevalence of mental health disorders in children, are highly questionable given the methodology employed and the very small number of subjects subsequently identified as possibly having either CFS or ME. It is hardly surprising to find that the authors '..found no concordance between parenteral labelling that a child had myalgic encephalomyelitis and operationally defined chronic fatigue syndrome' given the fact that the diagnostic criteria for ME/CFS are poorly defined in children [1] (with some being labelled as having post-viral fatigue syndrome/PVFS as well) and that there are significant differences between the research definition of CFS and the various clinical descriptions of ME which might be used by parents. And while children usually have the same key symptoms as adults, they frequently report other symptoms such as abdominal pain, nausea, and variations in appetite, which are far less common in adults. Neither am I convinced that reliable diagnostic information can be obtained by simply asking whether a child had '..been feeling more tired and worn out than usual' along with some follow-up questions (presumably by telephone) if the answer was affirmative. The only way to solve the problem of eliminating subjects with a misdiagnosis of ME/CFS (which can range from school phobia to other neuromuscular disorders) and include those where the diagnosis has been missed is through a proper clinical assessment involving history, examination and investigations where appropriate. And I have exactly the same concerns as to whether this methodology, along with the very small number of children identified, could produce any sound conclusions about the role of psychiatric disorders as either risk factors or as having an effect on the outcomes described. I am not an epidemiologist and would therefore be interested to learn the views of an expert in this area as to the most reliable way of obtaining some data on the incidence and prevalence of ME/CFS in children and adolescents. Dr Charles Shepherd 1 A Report of the CFS/ME Working Group. Department of Health. 2002. (http://www.doh.gov.uk/com/cfsmereport) Competing
interests: None declared |
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Paul
Lynch, Send
response to journal: Email Paul Lynch |
The obvious solution to the problem would be to simply separate myalgic encephalomyelitis (as defined by the World Heath Organisation. ICD -10 G93.3) from the functional somatic 'chronic fatigue' (as defined by Wessely et al) This could easily be done by creating a new stricter criteria for ME (ICD-CFS), possibly based on the disease defined by Melvin Ramsey, where medics can develop the various diagnostic markers already known to ascertain with a high degree of probability whether the patient has ME (ICD-CFS) as opposed to the functional somatic 'chronic fatigue' defined by Wessely et al. That way those with mitochondria dysfunction, who are likely to be made worse by psychological interventions such as graded exercise regimes, or indeed SSRI's, will be spared further unnecessary suffering via a misdiagnosis that ultimately confuses the numbers involved, and denies further investigation and consequently any chance of a cure. However, that simple resolve would mean studying a disease that is known to have environmental triggers, e.g. heavy metals, pesticides, etc, as well as viral / bacterial implications, i.e. HHV6, CMV, Mycoplasma and other known vaccine contaminates, including SV40. Therefore, ask yourself this; can the chemical / pharmaceutical industries who control research risk putting the aetiology of ME under serious scrutiny - for will they not implicate themselves in the cause ? As a 'thick skinned' adult patient who has experienced the cultured ignorance and confusion engrained within the medical establishment with regards to ME, I must offer my deepest sympathies to all the families who have children suffering both the disease and the apparent ignorance within the medical establishment, as well as all those who have lost family members to suicide. Also, as someone who has used various internet discussion groups over the years, I suggest any psychiatric co-mordity in children (or adults) with ME is a direct result of the condescending attitudes, inappropriate psychological interventions and the subsequent neglect these children face. I would argue that this creates a self-fulfilling prophecy for Wessely et al. I don't know what has to happen before something changes with regards these relentless attempts to psychologies ME (by lumping it together with functional somatic syndromes). Perhaps the only thing that actually needs changing is your attitude after reading this. I would sincerely urge you all to keep up to date with international research on ME that is seldom, if ever, presented in the BMJ, and then speak out against the gross injustice being carried out in the name of medical science. Please use your voice to help these children by demanding the Medical Research Council fund serious investigation into the cause and cure of the neurological disease ME. A disease the multinational, chemical, pharmaceutical and insurance industries may prefer to ignore the causes of. Competing
interests: Never worked for multinational, chemical, pharmaceutical or
insurance industries... |
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Jane
Bryant, Send
response to journal: Email Jane Bryant |
Whilst the findings of Chalder et al in this latest study may arguably be construed as uncontroversial, as a parent with a twelve-year- old son formally diagnosed with ME, my reaction and that of many parents in our situation is somewhat different. The key feature of recent ME/ CFS research is one of compromised immune cells, with significant disturbance to the oxidative pathway and lipid peroxidation. The MRC has recently announced £8.5 of funding to help develop services for people suffering from ME/CFS. Would it not be best to spend the majority of these funds on investigating the possibly multi- factoral causes of this condition with the objective of finding a soundly researched care path to follow? Publishing papers such as this from the psychiatry branch of medicine tell us nothing new and simply indicate that nothing has changed. We have not added to the sum of our knowledge, have moved no further forward and we parents resent the constant psychologising of this condition. So many families with children who have ME get caught between the damaging pincer movement of certain disbelieving doctors on the one hand and cash strapped education authorities on the other, desperate to get the child back to school to save on home tuition fees. So many of our children’s lives are being ruined by ME and all our hopes for them dashed. What we have requested year after year is research into the epidemiology on ME. Is this too much to ask for on behalf of our ME children? Jane Bryant Competing
interests: None declared |
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Douglas
T Fraser, Send
response to journal: Email Douglas T Fraser |
In their introduction Chalder et. al. make the observation that "at the other end (of the spectrum) the existence of the disorder (M.E.) is refuted", and I am assuming that they are referring to pofessional journals. This observation might tell us something useful. People who are ill will have an interest and trust in science that is uncontaminated by the political and personal interests of the investigators. Government and the insurance industry in contrast will have an interest in investigators who can shrink a large problem or make it disappear. Journals with ties to Government and insurance will have an interest in serving those investigators. This is to be expected. By making their observation Chalder et.al. highlight the important issue of how science can be influenced by politics and just how worthwhile it is to check who is funding any particular project before accepting its conclusions. DT Fraser. Competing
interests: None declared |
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Jane
C Colby, Send
response to journal: Email Jane C Colby |
Introducing this study, Chalder et al state: ‘We are unaware of any population studies in the United Kingdom that examine the prevalence of and factors associated with chronic fatigue syndrome in children’. They seem unaware that DOWSETT and COLBY [1] revealed that 51% of long-term sickness absence in UK schools in a population of 333,024 pupils in six widely spaced local education authorities was due to CFS/ME, making it the biggest cause of such absence. That finding was repeated in GARRALDA ET AL [2]. This is the largest group of children requiring home tuition. Prevalence rates from the Department of Health [3] imply that up to 24,000 children in the UK may have CFS/ME. Chalder et al write: ‘Parental report of myalgic encephalomyelitis or chronic fatigue syndrome was associated with maternal distress.’ Amazing. Whilst the earth-shattering discovery that parents of sick children are distressed is welcome, the suggestion that psychiatric disorder may account for mothers labelling their children with ME can only increase mistaken allegations of child abuse. Chalder also appears unaware of psychiatrist Michael Shanks’ research showing that CFS/ME patients seem ‘no more prone to overt psychological disorder before the illness than the general population’ [4]. I have twice asked why her views contradict clinical findings by Dr Shanks’ colleague on that paper, consultant microbiologist and CFS/ME specialist Dr Darrel Ho-Yen, regarding the effectiveness of ‘napping’ for ME patients. Both times she publicly confessed to being ‘unaware’ of ‘Dr Yo-Hen’s’ [sic] work. There seems to be no end to Dr Chalder’s worrying unawareness. Jane
Colby REFERENCES [1] Dowsett EG, Colby J. Long Term Sickness Absence due to ME/CFS in UK schools; An epidemiological study with medical and educational implications. Journal of Chronic Fatigue Syndrome May 1997 vol 3 (2) pp 29 -42 [2] Garralda et al. The course of severe chronic fatigue syndrome in childhood; Journal of the Royal Society of Medicine 2000 vol 93 pp 129-134 [3] A Report of the CFS/ME Working Group; Dept of Health Jan 2002 [4] Shanks MF, Ho-Yen DO. A Clinical Study of Chronic Fatigue Syndrome; British Journal of Psychiatry 1995 vol 166 pp798-8-1 Competing
interests: None declared |
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Richard
Simpson, Send
response to journal: Email Richard Simpson |
My God! When will these people ever learn? I have two daughters suffering from this god-forsaken illness which the medical community can't come to terms with or cure. CFS? ME? Not even sure which one to use. Doctors and 'experts' alike seem to be confused as to which to use. It's all lumped together as a term with nothing being offered officially but councelling, graded exercise and other simplistic solutions to coping with it. And here we get yet another irrelevant document. As if we didn't have enough to cope with in convincing doctors, schools, social services....we have to contend with this biased approach from the psychiatric community. We have spent years researching this on the net and can't believe the psychiatrists are still holding their ground. All I know is that this obviously isn't a psychological disorder any more than cancer is a state of mind. But what would anyone expect from psychiatrists? It's obvious from the second paragraph - 'This study was part of a larger study, carried out in 1999 by the social survey division of the Office for National Statistics to find out the prevalence of mental disorders in children aged 5-15.' You've already made up your mind! Where on earth do you people get the money to indulge in this nonsense? I can only concur with the suggestion that you guys have had your day. Now the research money should be spent in areas where it's really needed. The only satisfaction we parents of children who suffer from this dead-end of a medical diagnosis can retain from this shambles of a report is that one day, when a cause is found, then we can look back on all of this and find that Wessely and Chalder contributed precisely nothing to assist in the cure. Competing
interests: None declared |
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Suzy
Chapman, Send
response to journal: Email Suzy Chapman |
In
her response to Chalder et al’s paper, Jane Colby (eBMJ Rapid Response
24.09.03) raises a significant concern on behalf of all families with a child
or young person suffering from ME/CFS. Competing
interests: None declared |
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Graham
& Ann Robertson, Send
response to journal: Email Graham & Ann Robertson |
Diagnosis of ME or CFS in children seems to be very much a grey area. When our then ten year old son was diagnosed in 1994 he was submitted to psychometric analysis, which not only highlighted that he was a normal child with temporary cognitive disfunction, in addition to a predictable pattern of fatigue, but also eliminated depression, undiagnosed learning difficulties or other problems which could cloud the issue. Our son recovered in the care of Dr.David Smith who has a Study relating to the treatment of children with chronic fatigue published in the October edition of Archives of Diseases of Childhood (http://adc.bmjjournals.com). More about Dr.Smith’s understanding of the illness can be found on his new website on www.me-cfs-treatment.com Our son is now completely recovered thanks to a programme of low dose anti-depressants and graduated activity. His trigger for this illness was stress at school and, while antidepressants helped him to recover faster, there still remains the question of why he, and many others, should react to stress in this way. As lay people we understand that all body and mind functions are governed, to some extent, by one’s brain chemistry and it makes sense to think that some people’s brain chemistry is programmed from the start to be out of kilter. As we understand it there may be a close relationship between the endocrine system and one’s brain chemistry. If this illness is to be completely understood it is vital that specialists from other fields of medicine are involved in the research and even more vital that they communicate with each other and share their research and findings without fear of being beaten to the post by rival colleagues. Only in this way can deeper understanding be speeded up for the benefit of the thousands of children, and adults, of this horrible and debilitating illness. Competing
interests: None declared |
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Paul
Lynch, Send
response to journal: Email Paul Lynch |
For the record, Dr Smith was instrumental in the creation of the Oxford criteria (which has been said by many to have diluted the seriousness of ME) and doesn't use the name myalgic encephalomyelitis to describe what he refers to as "fatigue syndromes", but instead uses the umbrella term CFS and argues that the predominant pre-morbid factor is that of negative mental stress. In children (he says) the stressor factors are multiple, they nearly always include a combination of: The stresses of being adolescent - The stresses of peer group - The stresses within a particular school - Those of an academic nature. Although, sadly whilst constantly reiterating mental stress as the trigger of "CFS" he, perhaps predictabely, makes no mention of chemical exposure or vaccines as possible triggers. Not that surprisingly therefore, Dr Smith is also an advocate of the extremely controversial psychological interventions Cognitive Behavioural Therapy and Graduated Exercise Treatment regimes, to be used in conjunction with Prozac and Seroxat of all things, which he claims; "these medications are not only safe but non-addictive...They need to be taken for quite considerable lengths of time, usually years and typically two to four years." Dr Smith also boasts "C.F.S. is not only treatable but potentially curable." Although rather interestingly he does admit that the vast majority of the patients he refers to do not fulfil the Ramsey criteria ! Which he alleges was "so severe" and "a very hard-hitting diagnosis...and very alarming for the patient", yet we see patients recoiling at the term CFS whilst relentlessly campaigning for the use of the term ME. What can it all mean ? Reference: Chronic Fatigue Syndrome Understanding the Illness Management & Its Treatment By DR D. G. SMITH http://www.stantonm.addr.com/ Competing
interests: I am aware of the dangers of inappropriate psychological
interventions such as CBT, GET and antidepressents such as Prozac and Seroxat
for patients with ME (ICD-CFS). |
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Angela
P. Kennedy, Send
response to journal: Email Angela P. Kennedy |
My daughter has suffered (that being the operative word) with a devastating illness for three years, diagnosed as CFS/ME for two. Her greatest problem is not the 'fatigue' (although this is a demoralising feature of her illness), it's the constant excrutiating pain, for which she has little to no relief. Despite this, and her present, possibly future, loss of outside social life, educational aspirations and pleasures previously taken for granted, she stays reasonably positive, realistic, rational, and maintains her sense of humour: not the best candidate for the hysterical stereotype which appears to abound in much of the psychiatry-based literature around this illness. My daughter has been heavily, speculatively psycho-analysed, both in a generic sense by psychiatrists that have never met her, and directly by certain professionals with no specialist knowledge to do such a thing. Discursive categories have been assigned to her, her illness and her psyche, categories which are themselves products of the social world, not objective observation(despite their claims) and far too often using flawed evidence that is lacking in clarity, coherence and empirical adequacy, leading to the already rather vague comments made in the CMO's Working Party report, regarding patient's wishes being respected and their views listened to, sounding very hollow indeed. The move to psychologise a very serious internationally recognised organic illness by what appears to be a very determined cohort of psychiatrists and related colleagues is very worrying indeed, and has had extremely adverse material, social, and financial effects upon the lives of people already severely compromised by a serious illness and disability. It is, from a sociological perspective, quite pertinent to apply a theory of the social construction of disability to the practice of psychiatry in the field of ME and other 'Chronic Fatigue' syndromes. A key feature of of this is the phenomenon of the social myth of control, or 'mind over matter', which has been documented comprehensively by social scientists and cultural theorists. In the words of one of these, Susan Wendell, herself an ME sufferer: "When unproveable theories are generated to explain how someone could have avoided becoming ill... when people with disabilites are seen as having their psychological, moral and spiritual failures written upon their bodies, the myth of control is at work." (1996: 94) Such social myths have a historical basis, related to the influence of Freud and psychoanalysis, for example. This is not to deny the possibilities of psychosomatic or even imagined illnesses per se. However, such explanations are often made by default, without adequate investigation or suitable acknowledgement of patients' own knowledge about their bodies. Currently, far too many in the medical profession are failing the people they are supposed to be providing help to. An urgent reappraisal of the social myth of control is necessary, and the discourses of those working under it critically analysed, otherwise people will continue to suffer profoundly and unnecessarily, an absolutely intolerable state of affairs. Competing
interests: None declared |
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Dr
P V Finn Cosgrove, Send
response to journal: Email Dr P V Finn Cosgrove |
I am full of apprehension about contributing to this theme! There has been so much anger! And anger at psychiatry and psychiatrists! And here is yet another of those SO suspect psychiatrists contributing! All psychiatrists do is to blame the parents, and to imply that it is the parent's fault that their child is crippled with severe physical fatigue. Psychiatrists never behave like proper doctors! They never prescribe medication or, if they do, it's those darned antidepressants again and again and again. Psychiatrists don't care about people! They don't care about human suffering! They don't care about the patient! They deserve all the abuse they get! What they say and what they do is just, well, just "bollocks"! There's no way that Chalder T et al can have a good motive in their veins! Or should I say Wessely S, though I don't know why he's been tagetted as the villain of the piece, as opposed to Goodman R or Hotopf M or Chalder T, and even Meltzer H who is not even a psychiatrist. These people have only done this research to raise the profile of psychiatrists in a psychiatry-hating society. The BMJ should not have allowed them to publish this scurrilous paper, at least without an endocrinologist peer-reviewing it in case CFS/ME people have all got Addison's Disease! Well, let me shout back! If a parent of a child, functioning as that child's advocate, closes his or her mind to ALL POSSIBLE factors in regard to treatment, they are not doing well by their child! O gosh! I've done it now! I haven't got a CFS/ME child, so how can I be so callous and so uncaring! Maybe not! Maybe I haven't got a CFS/ME child. But what I do have is some understanding of brain function. And maybe, just possibly, something of what I am going to say might strike a chord with one or two parents. A chord of hope in the hopeless world of CSF/ME! You see, one thing that does arise out of this much maligned paper is that CSF/ME children are anxious children. And though I am a psychiatrist, I am not blaming the parents for this. In my clinical practice, I see many children, adolescents and adults who are more anxious than normal. And we discuss this together; and I suggest a medication, which is not one of those awful antidepressants, which are getting such deservedly bad press these days. And some parents say "No!" as they are entitled to decide, and some parents say "Yes! I'll give it a try, doctor!" So, what we start with is low dose Propranolol, and many parents say it's fantastic, that they wouldn't be without it. Propranolol is a beta- blocker and is licensed for the treatment of anxiety by the Medicines & Healthcare Products Regulatory Agency. Sometimes the anxiety occurs in the context of the child's poor motivation to do what he or she is asked to do, gets bored easily, loses interest easily, has no drive to do anything. Then I discuss with the parents using a medicine known as a dopaminergic, and the anxiety lessens and the motivation/drive improves, and there is definite improvement in the child's well-being as well as in the parents'. If your child has been ill with CFS/ME for a long time; if there appears to be no future; if no treatments have worked to date; if you are despairing; and if you ware willing to be open-minded to try something which might help your child, then consider propranolol for anxiety and a dopaminergic. Where do you go for help? Well, that's up to you to do some searching and enquiring. But remember this, some psychiatrists DO NOT blame the parents, but seek to improve the function of the brain rather like a proper doctor seeks to heal patients. Competing
interests: In practice independent of the NHS |
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Jane
Bryant, Send
response to journal: Email Jane Bryant |
It has been most interesting for parents with children diagnosed with ME to read what has been written on current ME research occurring worldwide in The Times dated 27 September. http://www.timesonline.co.uk/article/0,,8122-830376,00.html It would seem that studying the causal pathways and mechanisms underlying CFS/ME may very well be bearing fruit. Could Chalder et al be construed as possibly being somewhat behind the times? Competing
interests: None declared |
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Angela
P. Kennedy, Send
response to journal: Email Angela P. Kennedy |
While Dr Cosgrove made some interesting points in regard to his therapeutic approach, there are certain problems which remain unanswered: Firstly, his generalisation that CFS/ME children are anxious children. All of them? And why might they be anxious? Does not unexplained serious illness make people feel anxious, whether they be children or adults? What is meant by 'anxious', and where does anxiety become 'abnormal'? These are important issues to delineate in any diagnosis, surely? Secondly, are all CFS/ME patients therefore, victims of psychiatric/psychosomatic disorder, or is there a biological cause at least sometimes at work, a possibility, indeed probability which a large international body of evidence points to? Does this not mean, therefore, that DOCTORS need to keep their minds open? Thirdly, how can intelligent, diligent children who do NOT get bored easily, and are rational enough to make decisions to do what they are asked, fit into the generalised 'some children' description proposed? And last, but not least, are sufferers themselves, or parents of very sick children, not allowed to have opinions on academic works, or engage with the evidence, or the doctors within a relevant debate? Are we not to question what we are told, not to use our evaluative skills to critically analyse what we feel might harm ourselves or our children further? I'm afraid I WAS rather offended by Dr Cosgrove's second guessing as to my opinion and the opinions of other contributing to this debate. Please do not seek to belittle us. We have no hidden agenda, no need for power or status, we only want what is the best option for ourselves or our loved ones, and to the best of my knowledge, this does not signify deviant or inappropriate attitudes on our part. Competing
interests: None declared |
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Richard
Simpson, Send
response to journal: Email Richard Simpson |
And now we have it all. A facetious psychiatrist! In response to Dr P V Finn Cosgrove. Whether psychiatrists care about patients is something I’ve never really considered before. We have only listened, read and researched over the four years that my eldest daughter has had ME/CFS - sparing every moment we have in the time allowed apart from working and caring for our daughters and facing up to the varying degrees of apathy, indifference or which we come across from GPs, consultants, social services, local education authorities and schools. Whether Chalder, Goodman, Hotopf, Metzer have written the article – it makes of little interest to me – I apologise if I earlier refrained from naming all of them. I don’t think any parent of a child with ME would want to stop any publication to raise the profile and awareness of ME/CFS. However, it offers nothing to the child sufferers of ME or their parents. Just rehashed prejudice again and again. As I said before this article was already predetermined in its findings simply by its title. What you fail to appreciate time and time again is that the study of ME/CFS has always seemed to be one sided with little research, money or effort being spent in the other areas which might benefit patients. It seems the psychiatrists always get the bulk of the funding for research. Is there really any surprise that the only conclusions are always that this illness can have a resolution by people like yourself? And yours seem to be the only findings which make the headlines - thus influencing and prejudicing the whole debate and the wider population. Do you honestly think we have all closed our minds to anything else? If only it were so simple. Come along to any ME family and spend a typical week in our lives. You’ll see the way we try to accommodate this illness into as normal a way of life as is possible and the extremes we go to make up for the lack of any proper, coordinated research. We have tried everything that we can see is a safe and possibly worthy attempt to alleviate the pain. We have gone through a list as long as this article of homeopathic remedies and used our own heuristic approach to determining what is best and what works for our daughter. Some things help, some don’t. We have been urging our GP and hospital to take on a more proactive role to investigate all research we provide and act as coordinators for the wider population of ME sufferers. You offer anxiety as the magic bullet! Do you really believe it’s that easy? Dope them up and hope they recover. Are my kids anxious? Maybe nowadays – when they see me getting so frustrated with biased and narrow areas of research. You also write ‘…Sometimes the anxiety occurs in the context of the child's poor motivation to do what he or she is asked to do, gets bored easily, loses interest easily, has no drive to do anything. ….’ No – you are wide of the mark here, certainly in my daughter’s case, and it is this type of generalisation, I feel, for which parents and sufferers alike harangue the psychiatrists. It isn’t boredom or loss of interest which I have seen is the problem – it is the pain and discomfort which prohibits any activity or concentration. In fact ambition and motivation are the key factors which my daughter has harnessed to help her through this. I don’t believe we are talking of the same illness here. Anxiety didn’t cause the mycoplama bacterial infection which preceded my daughters’ illness and which, although a suspect in a number of cases of ME, hasn’t been comprehensively researched because – well, there isn’t any funding. I wonder where the funding has gone? Anxiety was never mentioned by the GP, the hospital consultant, the school, the VTS teacher. I have two young children with this? Does genetics play a part in anxiety? I don’t know. I’m just a parent after all. But I have to admit thinking there might be other lines of research worthwhile pursuing and financing and which we have seen through extensive researching ourselves (all of them with a biological basis). Where do we go for help? Do ‘some searching’ and ‘enquiring’ you say. No, sir, it is evident that you do not have a child with ME. I’m glad for you. Because you, as a psychiatrist, will never see the total disruption this makes to a family where parents have to see their child go through some of the most critical years of their lives forgotten by the community of doctors, schools and finally friends without being able to offer anything but the love and attention which we all give without a second thought. You won’t see the hours every day and night that we are spending ‘doing some searching’ and ‘enquiring’ through the various net sites around the world and communicating with other parents and ME sufferers – all of us looking for that one element of research or experience which might make the difference to our childrens’ recovery. Instead you can live in your sterile world and ignore the bulk of parents who are telling you that there is more to this than just a set of graded exercises and now, ‘propranolol for anxiety and a dopaminergic’. Is there really any wonder people might stop listening to you? What is obviously required is to look at the whole spectrum of possibilities regarding a diagnosis of ME/CFS as, currently, not all cases are exactly the same and the diagnosis itself is essentially a medical cop -out for ‘We don’t know’. Why don’t you campaign for a UK centre for research where all aspects this illness are researched and where different specialists in medicine work together, including yourselves? A UK centre to which is attached a network of hospitals and GPs who are able to communicate and receive news on the latest research, and would be the local area of expertise to which parents and patients could go. A UK Centre to which a a single UK charity would be able to exist to raise funds in addition to whatever government funding were available. It would be a far more admirable use of resource than continuing to retain and publicise the dogma which collectively forces us parents of children with ME to stop listening. I don’t hate you. Neither do I hate your psychiatric community. You are, I suppose, doing your jobs. I just find your contributions so predictable and self-serving that they become irrelevant to the recovery of my daughters. Competing
interests: None declared |
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Suzy
Chapman, Send
response to journal: Email Suzy Chapman |
Dr Cosgrove (eBMJ RR 27.09.03) feigns bemusement at the angry responses of parents generated by Chalder et al’s paper (not to mention those of charity CEOs, medics, adult sufferers and sociologists). May I offer Dr Cosgrove just one example of why parents find the methodology and conclusions of this paper so potentially damaging and his generalisations so offensive? A young man of 13 develops significant symptoms, following a virus, in Year 8. An MRI brain scan rules out a brain tumour and he is given a firm diagnosis of ME by his paediatric consultant. He is too unwell to access mainstream education. His school, his EWO (Educational Welfare Officer) and his consultant all recommend that his health status and educational needs are such that an application should be submitted to the LEA for the provision of a tutor from the Home Tuition Service for one-to-one tuition to be delivered in the pupil’s home. The EWO is to submit the application but the recommendation of the Community Paediatrician (School doctor) is required to support this. The Community Paediatrician has not yet met the family but is provided, towards the end of summer holidays, with a written account of the boy’s symptoms by his mother. This
provides the following information: This information is also discussed in a telephone conversation with the Community Paediatrician in which she is advised that the EWO is preparing to submit an application for LEA Home Tuition. The Community Paediatrician is now in possession of all presenting symptoms and their impact on the child‘s ability to cope, not just with studying but also the considerable impact his symptoms are having on his day-to-day family and social life and she is advised that both the consultant and the EWO are recommending that his education be delivered via one-to-one Home Tuition. Does the Community Paediatrician agree with the consultant, the school, the EWO and the parents that a recommendation urgently needs to be put in place for a Home Tutor to be provided to teach a small number of subjects delivered in short session lengths appropriate to the needs of this sick child, up to the maximum allocation of 5 hours per week? No, the Community Paediatrician says that a PRU (Pupil Referral Unit) is more appropriate on the grounds that this would provide ‘social interaction’ with other young people and that this young man could be taken by taxi to the nearest town in order to attend a PRU. And that Home Tutors are not in any case skilled in delivering quality education. For those not familiar with Pupil Referral Units these are Units out of mainstream school for pupils who have been excluded, for pupils with behavioural problems, for pregnant schoolgirls, school phobics. Pupil Referral Units are not considered suitable provision for the delivery of education for sick children by the DfES and are especially unsuited to those needing one-to-one ‘special needs’ tuition in a quiet environment, for very short periods with facilities for immediate rest following study or rest breaks during study such as required by those with ME/CFS. And although Home Tutors liaise with the pupil’s school so that those studying GCSE courses can maintain continuity of exam board specifications (syllabuses) to enable easy of transition on reintegration into school, there are no guarantees that continuity of course specifications can be maintained by staff in Pupil Referral Units nor that staff will necessarily be subject specialists qualified to deliver GCSE courses at, for example, the higher level in Mathematics. Does the Community Paediatrician who replaces this member of staff a few weeks later put in an immediate recommendation for Home Tuition? No. And what of the child’s GP? Does he, having been fully updated on the child’s current symptom level, throw up his hands in horror at the suggestion of a PRU for a very sick child? No, his advice is that Home Tuition should be avoided at all cost and that the child should be returned immediately to school. Did the parents take his advice? No. Did they agree to a PRU? No, they did not and it would have been totally inappropriate, irresponsible and extremely damaging to the child’s health and education had he attempted to attend a Pupil Referral Unit. So three medics were prepared to recommend that a child’s health and welfare be sacrificed to the concept: ‘It is more important that a child be placed in a setting for the maintenance of ‘social interaction’ with other young people than receive educational support appropriate to his special educational needs as a sick child’. In fact the individual needs of the sick child were not being considered at all. This is not an isolated case, Dr Cosgrove, and this is just one reason why parents of children and young people with ME/CFS become so very angered by papers like this one of Chalder et al’s and why we are equally angered by the apparent flippancy and tone of responses such as yours. Cosgrove says, “You see, one thing that does arise out of this much maligned paper is that CSF/ME children are anxious children.” If this is indeed the case (and the collection of the data for self reported ‘CFS’ and ‘ME, and the methodology of the research itself, renders this paper’s conclusions highly questionable) it would hardly be surprising given the attitudes of some UK medics towards children and young people with this appalling illness. By the way, this highly motivated (but not anxious and depressed) young man did (with the intervention and support of the hospital and EWO and at the parent’s insistence) secure four continuous years of LEA Home Tuition enabling him to achieve a small number of GSCEs at useful grades. These were sat at home, at the dining room table, with an invigilator with exam board 'special arrangements’ of additional time and two hour rest breaks half way through each exam paper. Since Oct 2001 the Joint Council for General Qualification’s publication “Regulations and Guidance Relating to Candidates with Particular Requirements” [1] has included specific reference to the special needs of the child with ME/CFS and accepts that the wide range of symptoms this condition can generate require special educational arrangements for both the completion of the coursework element and the completion of exam papers. If required, computers or amanuenses can be used, arrangements can be made for exam times to be rescheduled for the time of the day when the pupil is most alert or best able to cope with written work. Exam boards are most accommodating of the needs of pupils who have ‘special requirements’ and accept that because of the wide range of symptoms what is required by one pupil with ME/CFS may be completely different to that required by another. If examination boards can recognise this need why do so many medics in this country still have a problem with this illness? Oh, and this young man did try low dose propranolol in the early months of his illness (not for ‘anxiety’ but to see whether it might help alleviate the headache and hyperacusis) to no effect other than to give him weird dreams. There are worse illnesses than ME/CFS for families to live through but nevertheless ME/CFS is a nightmare, please do not belittle the concerns of families with flippancy and generalisation. 1 Joint Council for General Qualifications: Regulations and Guidance Relating to Candidates with Particular Requirements http://www.jcgq.org.uk/Publications_and_Common_Docs/Regs_and_Guid_Cands_w_Part_Reqs_2002 -3.pdf Competing
interests: None declared |
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Tom
P Kindlon, Send
response to journal: Email Tom P Kindlon |
Editor, The authors claim that the rate of CFS that they found in children in their study (0.19 [95% C.I. 0.06-0.32]) is lower than the rate found in equivalent surveys in adults [1]. However no studies are mentioned to back this contention up. Arguably the two highest-quality studies, using a random adult population using the CDC (94) criteria [2], are the Buchwald et al [3] and Jason et al [4] studies, funded by the CDC and NIH respectively. These found prevalence rates of 0.183 [95% C.I.: 0.075- 0.267] and 0.422 [95% C.I.: 0.29-0.56] respectively. Another prevalence study of CFS [5] using a different methodology, found a rate of 0.112. Tom Kindlon 1. Chalder T, Goodman R, Wessely S, Hotopf M, Meltzer H. Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds: cross sectional study. BMJ 2003;327:654-655 (20 September). 2. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994;121: 953-9. 3. Buchwald D, Umali P, Umali J, Kith P, Pearlman T, Komaroff AL. Chronic fatigue and chronic fatigue syndrome: prevalence in a Pacific Northwest health care system. Ann Intern Med. 1995;123:81-88. 4. Jason LA, Richman JA, Rademaker AW, et al. Acommunity-based study of chronic fatigue syndrome. Arch Intern Med 1999;159:2129-37. 5. Bazelmans E, Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van Weel C, van der Meer JW, Bleijenberg G. Chronic Fatigue Syndrome and Primary Fibromyalgia Syndrome as recognized by GPs. Fam Pract 1999 Dec;16(6):602-4 Competing
interests: None declared |
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Ann
Robertson, Send
response to journal: Email Ann Robertson |
In support of Dr.Cosgrove’s views expressed in this discussion, it is quite possible for a child to be anxious without a parent even realising it. It certainly was in the case of our son (A plea for research co-operation) who was being bullied by his peers at school and adopted a stoical attitude until he became so ill I have had experience within my own family of anxiety linked illnesses and I understand only too well what he felt, and what many other kids are feeling. Anxiety is the NORMAL ’fight or flight’ response of churning stomach, loss of appetite (or the opposite)and nausea, which is running out of control, having been switched on so often that it is there almost all the time. This leads to loss of sleep which, over a long period of time, leads to cognitive disfunctions, emotional lassitude and extreme fatigue. All you then need is a dose of ‘flu or similar immune attack, or some other trauma and – bang! You cannot recover from it without the right help. Cognitive Behavioural Therapy helps you to control the anxiety so that the anxiety doesn't control you. Medications that support brain function have been shown to improve sleep, lessen anxiety and give the sufferer a chance to get back on his feet. However, the vital key is to discover and eliminate the cause of anxiety. While we have been running patients’ support group we have known and encouraged many people, including children, with ME/CFS. All of them have been under some sort of stress prior to becoming ill. One was a perfectionist/workaholic who was never satisfied with her ‘A’ grades, one or two young people were being pushed academically by their schools to achieve grades which, quite simply, were not within their reach.and some were just driving themselves to do more than was physically possible. Anxiety is NORMAL – it shows you are sensitive. It is not a sign of weakness – it can be an untapped source of strength. More information on www.me-cfs-treatment.com Competing
interests: None declared |
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James
Taylor, Send
response to journal: Email James Taylor |
What about people like me who had absolutely NO anxiety or stress in their lives before getting ill? How does your "theory" fit the many people with ME like me? It doesn't does it? I was incredibly happy just before getting ill with a busy and enjoyable active life, and no I wasn't over-doing it either. I was living the life of a "normal" 17 year old greatly looking forward to going to university. I never had any trouble with my sleep for instance. I slept like a baby, and indeed did so for the first few years of my ME until later when my sleep became poor and disturbed as it has remained so. My ME began after contracting the wierdest "flu" I have ever had. I went back to school and continued my life as before, or tried to. I went skiing and played all my usual sports and worked as normal ( not very hard!). But it was plain something was not right. I felt increasingly tired and just not right. However I was still very happy and content. Eventually I became too ill and was told I had a type of glandular fever which showed up in positive blood tests. And that was that; I had ME, although it was a few years before I even knew the term ME as this was over 20 years ago, so so much for the theory that I was picking up on a fashionable disease. Pretty hard to do when you don't know it exists! I even forced myself to leave home for two years and do a full time course at Polytechnic, not something one with anxiety would really put themselves through is it? It was incredibly hard work and it probably made me lots worse in the long run although I loved it. I had to resign from my place on a degree course because I was too ill to walk 30 yards down the corridor although I tried my hardest. Are these the actions of the sort of person certain parties are trying to portray ME sufferers as? I don't think so, and I am in no way unique. Most of the people with ME that I have known are incredibly positive, determined and brave. Also please stop this nonsense of portraying us as being dismissive of mental illness or denigrating of people with mental illness. The only "problem" we have with mental illness is that ME is WRONGLY being labelled as being one. You talk of stigma, well how about the increasing stigma of having ME? I fight it every day of my life. Lastly, I have tried anti-depressants and anti-anxiety drugs myself, mainly from asking my GP myself to try them. NONE of them have had any real beneficial effects. Indeed any anti-anxiety drug makes me extremely ill with bad reactions to them. I had a VERY bad reaction to the anti- depressant Lustral which caused me seizure type epsisodes and caused me to have an extremely bad and long flare-up of my ME symptoms generally. This is not an uncommon reaction. So to go around promoting these sort of drugs for treating ME could be potentially very harmful to sufferers. How do you explain this then? Your theory doesn't seem to hold water does it? Certainly not for people with real ME and not just an anxiety fatigue condition. ME IS NOT the same thing by a very long way. Competing
interests: Long-term sufferer of ME |
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Arthur
J. Finnie, Send
response to journal: Email Arthur J. Finnie |
Sir, Since contracting this very unpleasant illness M.E., a rough calculation reveals my loss of income to be between one half and three quarters of a million pounds. However, at no point have I ever been subjected to even the remotest hint of fashionable post-viral pop- psychology. This could be because I`m a six foot four male and tend to wear Armani suits, or it could be because I consult knowledgeable physicians. Not unnaturally, my eighty year old mother, living in the US, is quite distressed by my non-recovery, but no one has dared to have the effrontery to undermine her and my doctors, however circuitously, by suggesting that her distress "caused" her to "diagnose" M.E., and what`s more, to insinuate that she or my extremely supportive wife are somehow guiltily involved in some arcane chain of causality without any plausible or believable mechanisms ( "...it is impossible to determine the direction of causality".... What?? Is this serious?), presumably mysteriously perpetuating my defunct state and in need of your predetermined "explanations" and conveniently available brand of "treatment" for themselves . During the last outbreak of foot and mouth disease, it`s well known in some circles that Government agencies turned down offers from private laboratories with sophisticated diagnostic equipment (PCR) which could have hastened reliable diagnosis and perhaps saved much of an industry . And this...... to keep costs down ! Lives were ruined, some lost, and the negative economic consequences were very considerable. Who knows, was "remote diagnosis" by phone involved instead ? "Are your cows feeling a bit more tired and worn out than usual Farmer Brown?" " How tired and worn out do you think your cows should usually be, Farmer Brown?" " Err, are you suffering from some sort of distress yourself, Farmer Brown?" etc. I understand that there is presently no one single diagnostic test for M.E. although there are elsewhere sophisticated combined laboratory tests along with clinical data to confirm this diagnosis. I also believe that a clinical diagnosis can be reliably made face to face, but not without difficulty and considerable skill. Yet here we have a questionnaire-survey guessing-game type of an article authoritatively purporting to have found "a strong association between psychiatric disorder and these outcomes" without even bothering to establish reliable diagnoses of an as yet to be unravelled and technically unknown disease, in defenceless children ! (One also wonders what the "pressures" might have been for the unwary to answer "correctly", in the absence of white coated intimidation, and it would have been interesting to at least see those "supplemental" questions fully, in order to understand a lot more of what`s actually going on here.) If I may be permitted, perhaps readers would also like to play a not too dissimilar guessing game, but on this occasion it will be about some of the team involved. I will let a member of the team responsible for this article (SW) explain his "worry", and then we too can indulge in some guesswork about what ails them, and perhaps even why : ** "There`s a danger that we`re going back to our roots in which psychiatry just sees people who hear voices and the rest can be dealt with by the trained counsellor. This is a thing that`s happening in healthcare and psychiatric care, certainly in Britain and other cultures as well and it is very worrying indeed. Who then are the somatisers? I conclude by pointing the finger at us doctors, we are somatisers and we live in the dualistic world in which there`s physical and psychological illnesses, where there`s real and unreal illness, there are shirkers and the really sick. But as research doctors finally prove shirkers really are sick, pretty clear isn`t it? Which would you rather be - would you rather be a shirker, then you can come and see me that`s okay, I`m a psychiatrist, or would you rather be sick, then you go and see the virus research doctor. Oh and here he is, the virus doctor, very famous one, in his white coat with a stethoscope, you wouldn`t mistake him for a psychiatrist, would you, absolutely not. A friend of mine is looking for the virus that causes ME/chronic fatigue syndrome. He hasn`t found it yet as I don`t think anything that complex is going to be caused by anything that simple, but that`s irrelevant, so long as our virus research doctor is on the case, what is he delivering? Well, look, it says here that fatigue syndrome gains doctors respect, so our virus doctor could deliver respect. Unfortunately when a patient is referred to a psychiatrist like me, what can they expect? That`s why people somatise." My guess ? You got it ! Yours, Arthur Finnie. ** http://www.defeatdepression.org/pdf/conferences10.pdf For information about the CDC CHRONIC FATIGUE SYNDROME PROGRAM (Update 2002-2003): www.cdc.gov/ncidod/diseases/cfs/program-updates/cfs-uptdate- 031703.htm For an extract from "Diagnostic and Treatment Protocols", from the Canadian Clinical Case Definition: http://www.cfids-cab.org/MESA/ccpc-1.html For the UK MRC "response" to ME/CFS: http://www.mrc.ac.uk/index/public-interest/public-press_office/public- press_releases_2003/public-15_may_2003.htm Competing
interests: None declared |
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Denis
W Scadeng, Send
response to journal: Email Denis W Scadeng |
Like Graham & Ann Robertson we had a son who was treated by Dr Smith. He had CFS/ME for 3 years (age 13-16)and is now fully recovered. Dr Smith gets people better. His method works and that is more important than all the hot air generated by both sides of the divide. The distinction between psychological and physical is dangerpous nonsense, this illness overlaps into both areas. Good research whether psychological or physical should be accepted and incorporated into a unified model for the diagnosis and treatment of CFS/ME. Competing
interests: Parent of a child who had and recovered from CFS/ME |
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Dr
P V Finn Cosgrove, Send
response to journal: Email Dr P V Finn Cosgrove |
Angela Kennedy asks "What is meant by 'anxious'? (28 September), and Ann Robertson writes, "The key is to discover and eliminate the cause of anxiety" (30 September). Everybody has experienced anxiety within themselves, but not everyone can describe the experience in words. Anxiety is the inner fear of being hurt. Anxiety worries about being injured, whether physically by being hit, for example, or emotionally by being humiliated, or threatened with physical injury, or being unjustly or sarcastically spoken to, for examples. Anxiety feels itself as being in danger of being damaged in some way or other. Anxiety worries about being hurt. Anxiety worries. To worry someone else is to make them feel that there is hostility in their immediate environment. It may be the hostility of being hit, or of being frightened by another person's anger, or distressed by a heated argument between two much-loved people, or the fear of someone having a temper outburst with shouting, raging, swearing, banging objects and adopting threatening postures and bodily positions. Children are vulnerable; they are weak relative to non-children; there is a defencelessness about them (to a greater or lesser degree). And if you, as a child, perceive yourself as unlikely to be able to defend yourself from injury, then you are anxious of hostility or of threat, which you think is there or is likely to be there in the near, unpredictable future. Some children differ from other chlldren in that they are born predisposed to timidity and fearfulness. Their anxiety is often present even when the environment is not hostile or threatening by any reasonable judgment. An anxious child is likely to be unhappy, absentminded, forgetful and may have poor concentration. The child's tension can impair their ability to settle off to sleep at night as well as being restless once asleep with waking on and off through the night. The anxiety, the fearfulness, the worrying, together with the poor sleep at night, can cause the child to feel tired and FATIGUED during the daytime. Anxiety can cause the child physical problems, such as poor appetite which contributes to FATIGUE. Anxiety can produce weakness in the limbs, muscle twitching, shaking and tremulousness of hands and limbs. PAIN in the muscles can develop due to the muscular tension of worrying, of being anxious. In fact, PAIN due to muscle tension is common in frequently anxious people, and can be labelled as 'rheumatism'. As Ann Robertson so wisely says, "It is quite possible for a child to be anxious without a parent realising it". Richard Simpson reflects, "Are my kids anxious? Maybe nowadays - when they see me getting so frustrated..." (28 September). For the sake of your child, don't ignore anxiety! Don't be blinded by your personal anger! Forget psychiatry in all this! Just think about your child, and, if you conclude that he or she might possibly be anxious, then try your child on Propranolol 10mg on returning home from school for 7-10 days. Then listen to your child as to whether he or she does feel calmer after the tablet after an hour or so of swallowing it. If one tablet of Propranolol (10mg) helps, then try one in the morning as well, and see if your child is calmer at school or is less worried about leavng for school in the morning (if this is a problem). Get your GP to prescribe. You don't have to go anywhere near a psychiatrist if you don't want to! Ann Robertson was so refreshingly honest and courageous in giving us so much personal information about herself and her family. She talks about "my own family of anxiety-linked illnesses". She talks about "medications that support brain function have been shown to improve sleep and lessen anxiety". She's right! If you're stuck, and if you are frustrated with doctors, and if you've got nowhere to go with your CFS/ME child in terms of treatment, then try Propranolol, which is licensed for the alleviation and treatment of anxiety. See how it goes. You can always stop whenever you want to. Competing
interests: In practice independent of the NHS |
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Gerard
T O' Brien, Send
response to journal: Email Gerard T O' Brien |
With regard to the prescription of propranolol, of course the usual contra-indications for beta-blockers , especially asthma; cautions such as aggravation of raynaud's, if present, etc apply. Also discussion of possible side-effects and monitoring for possible excess bradycardia when adjusting dose. Betablockers are likely under-used as anti-anxiety agents in general. Competing
interests: None declared |
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Tom
P Kindlon, Send
response to journal: Email Tom P Kindlon |
Given the information in my previous response, it seems strange that the press release on the paper was headed "Chronic Fatigue Syndrome Is Rare in Children" [1] 1. http://www.newswise.com/p/articles/view/36657/ Competing
interests: None declared |
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Trudie
Chalder, Send
response to journal: Email Trudie Chalder, et al. |
Sir, The study, recently published in the BMJ1, which examined the epidemiology of chronic fatigue syndrome (CFS) and self reported ME in 5- 15 year olds, attracted a number of emotive responses. We would like to make a number of points about the study design and its execution. First, the study used data that was collected independently of the authors, without the specific aim of studying CFS/ME. Second, the sampling method was specifically chosen to avoid selection bias. Third, response rates were high as one might expect from Office for National Statistics studies suggesting that it would be difficult to understand how substantial numbers of children with serious morbidity could have been missed. Fourth, we were criticised for using a broad definition. However, using a narrower one as some correspondents wished would have resulted in the prevalence rates being still lower. We agree whole heartedly that irrespective of the numbers involved, for those affected this is a very serious problem indeed, as we pointed out in our press release. Our own experience means that we have no difficulties at all in accepting that CFS is associated with profound suffering, substantial disability and makes a considerable contribution to long term school absence, longer than cystic fibrosis or leukaemia. We therefore welcome unreservedly the announcements of Department of Health funding for new services for children with CFS. The principal author runs a research service which only sees children with CFS and is committed to developing and evaluating treatments for the condition. 1. Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds: cross sectional study (2003) BMJ. 327; 654-655. Competing
interests: None declared |
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Jane
Bryant, Send
response to journal: Email Jane Bryant |
Dear Editor As the parent of a twelve year old boy who has suffered from ME for the last two years or more, I am pleased to note that Ms. Chalder accepts that ME/CFS in children is associated with profound suffering. Ms. Chalder’s letter also states that she welcomes the prospect of developing and evaluating treatments for children with this illness. The difficulty that we parents have is in evaluating what these unproven treatments might consist of. Ms. Chalder's colleague, Professor Simon Wessley, stated on public record at the 9th Eliot Slater Lecture in 1994 that : "There is also a phenomenon known as myalgic encephalomyelitis - or ME. This is not open to simple definition - ICD 10 now discourages its use for that reason - Instead, I will argue that ME is simply a belief, the belief that one has an illness called ME." My son has been diagnosed with ME by Great Ormond Street Hospital for Sick Children and a belief system played no part in this diagnosis, neither does his continued suffering. Indeed, ME is recognised as a neurological illness by the World Health Organisation (ICD-10. G.93.3). This definition and classification still stands worldwide. Canada has recently produced pioneering clinical guidelines drafted under the authority of the governmental "Health Canada" by an Expert Medical Consensus Panel. The eleven international ME/CFS expert physicians who made up the Panel, have between them diagnosed and/or treated more than 20,000 ME/CFS patients. It is treatments like these that myself and so many parents with ME children in this country would like to see put in place. Not the treatment of a belief propounded by Professor Wessley (psychiatrist) that so many medical experts with the experience of treating literally thousands upon thousands of ME/CFS sufferers worldwide contradict. Yours sincerely Jane Bryant Competing
interests: None declared |
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Ellen
Goudsmit, Send
response to journal: Email Ellen Goudsmit |
The response of Dr Chalder and her colleagues to the criticisms reported online is most illuminating. They write: "First, the study used data that was collected independently of the authors, without the specific aim of studying CFS/ME." This seems to me to be the first problem. Would one trust figures on breast cancer which were obtained simply by asking if women had felt a lump in their breast? Symptoms such as chronic fatigue, headaches and general aches and pains are so common that without a medical examination, tests to exclude other disorders - and checks for some of the odd diets which adolescents favour - one should not make the diagnosis of CFS. Just counting symptoms increases the risk of this syndrome becoming another 'dustbin diagnosis'. And what do we do with that? They continue: "we were criticised for using a broad definition. However, using a narrower one as some correspondents wished would have resulted in the prevalence rates being still lower." This is a significant point. Were they after quality or quantity? Surely they were trying to obtain a reliable estimate of the prevalence in children and adolescents? The prevalence figures for adults using narrow definitions is about .1%. One expects the estimates for children to be markedly lower. They weren't. So who did the researchers identify? Estimates obtained using broader criteria which select people with stress disorders, nutritional deficiencies, phobias as well as post-viral syndromes have ranged from about .4 to 2.6%. This suggests that the figures reported by Chalder are on the high side. So this was probably not a study of CFS but of various conditions characterised by fatigue, worry, aches and pains. It's interesting that this research was funded by the Department of Health. Perhaps a more objective peer reviewer might have seen the obvious flaws in the design and so prevented precious resources being wasted on yet another study of, well, something which may, or may not be CFS. Postscript. My apologies to regular readers of rapid responses, who will have noted that I seem to be pleading for more accuracy in research on CFS about every two months. I think this is a case of orthodox shrink versus brick wall. My decision to write again is based solely on the belief that precision matters in psychological medicine, just as much as in oncology and rheumatology. And colleagues deserve to know the other side the story, and not just from patients. Competing interests: None declared |
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