Tag: ME Association

MEA Review: Grey and white matter differences in chronic fatigue syndrome

The ME Association of Great Britain has provided an excellent review of a recent study on brain matter abnormalities in ME/CFS patients. The study, Grey and white matter differences in Chronic Fatigue Syndrome – A voxel-based morphometry study, was conducted by Julia Newton’s group at Newcastle University. Below is an excerpt from Dr. Shepherd’s summary of the study. To read a full discussion, along with an excellent overview of brain pathology and the implications of these brain abnormalities, go HERE. You can download the full review as a PDF file.

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Comment from Dr Charles Shepherd, Hon Medical Adviser, ME Association:

This study was carried out in Newcastle by Professor Julia Newton and colleagues – a team who have not only achieved a long and distinguished record in ME/CFS research but also have access to patients who have been very carefully assessed from a clinical point of view. So, the results should be taken seriously.

As has been pointed out in this review, three of the main criticisms of previous neuroimaging studies involving people with ME/CFS is that the numbers involved have often been far too small; there has been a lack of information from other control groups that would be relevant in addition to the use of healthy controls; and that different imaging techniques have been used.  So, not surprisingly, the results are not always consistent.

Despite these caveats, these results clearly add weight to the findings from previous neuroimaging studies describing white matter abnormalities in ME/CFS but also raise the possibility of grey matter involvement in ME/CFS.

There are several possible explanations for these findings but no clear answer has emerged in the paper.  Are they a primary feature of ME/CFS?  Or are they secondary to other factors – e.g. duration of illness, decrease in activity, severity of fatigue – that are related to having ME/CFS?  The only way to find out is through further research into what is clearly an interesting aspect of neuropathology in ME/CFS.

A fully referenced summary of all the key findings from both functional and structural neuroimaging studies in ME/CFS can be found in the Research section of the ME Association ‘An Exploration of the Key Clinical Issues’ available from our online shop.

You can read the rest of this brief summary HERE.

Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny

Editor—Over the years, the ME Association has noted that some of those writing in the BMJ make assumptions about the views of organisations concerned with myalgic encephalomyelitis. These assumptions concern the organisations’ views about the aetiology and treatment of the disease. We wish to put the record straight as regards the position of the ME Association. We do not regard the mind-body issue as clear cut. We accept that, as in any long term disabling illness, symptoms will include both physical and psychological components, and we make this clear in our literature. We find unacceptable the often voiced assumption that our views on aetiology and treatment are coloured by prejudice against psychological illness or a wish to stigmatise such illnesses as less valid than physical illness. All illness, whatever the cause, is legitimate, and patients with that illness are worthy of respect and acceptance.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127598/pdf/9361555.pdf

 

Source: Hume M. Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127598/

 

Patients with a self diagnosis of myalgic encephalomyelitis

Comment on: Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-S J Hurel and colleagues should have checked their facts more thoroughly before making such a generalised attack on the content of literature produced by the two support groups for patients with myalgic encephalomyelitis (ME).

The ME Association does not believe that candida albicans is involved in the pathogenesis of the condition. Our booklet Guidelines for the Care of Patients states that “no reliable scientific evidence has ever been published to support such a link” and that “consequently, anti-candida regimes involving highly restricted diets, probiotics and antifungal drugs cannot be recommended.”2 Equally, we repeatedly warn our members about the serious dangers of colonic cleansing (particularly in relation to the risk of unhygienic operators transferring gastrointestinal pathogens) and advise extreme caution when consulting herbalists or buying over the counter herbal remedies. If we really were producing literature that contained pseudoscientific nonsense and advocated dubious forms of alternative therapy I doubt whether the Department of Health would be providing funding to expand the work of our information department.

Had the authors checked with our booklet they would have found that we are not in favour of self diagnosis and strongly recommend consideration of nearly 50 physical and psychological conditions that can present with chronic fatigue as the principal clinical feature. In this context pituitary tumours are specifically mentioned as we are aware of at least two other cases similar to that reported by Hurel and colleagues in which misdiagnosis occurred. Furthermore, our literature emphasises that “significant or progressive weight loss is not a normal feature of ME, and where it occurs alternative explanations (eg hormonal) should always be excluded.”

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf

 

Source: Shepherd C. Patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Oct 14;311(7011):1021. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf (Full comment)

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Although the precise pathoaetiology of myalgic encephalomyelitis remains the subject of debate, Shonagh Scott and colleagues are incorrect in asserting that “no evidence exists” of encephalitis. Buchwald et al carried out a large cohort study in which neurological symptoms, results of magnetic resonance imaging, and lymphocyte phenotyping suggested that the patients were experiencing “a chronic, immunologically mediated inflammatory process of the central nervous system.”2 More recently, Schwartz et al, who used single photon emission computed tomography, described abnormalities that were consistent with the hypothesis that “a chronic viral encephalitis” may be present.3 Furthermore, in the only postmortem study to have been published the polymerase chain reaction showed enteroviral sequences (compatible with coxsackie virus B3) in samples from the hypothalamus and brain stem,4 indicating that viral persistence within selective parts of the central nervous system may also play a part.

Given the uncertainties surrounding both the pathoaetiology and the diagnostic criteria for myalgic encephalomyelitis, it is not surprising to learn that self diagnosis produces difficulties in the doctor-patient relationship. The conclusions of and motives behind Scott and colleagues’ study must, however, be questioned in view of the fact that the fictitious patients had a list of vague symptoms that failed to satisfy diagnostic criteria for either a chronic fatigue syndrome (as defined by the International Chronic Fatigue Syndrome Study Group)5 or a postinfectious fatigue syndrome (as defined by current British criteria).6 Neither did the symptoms accord with those that patient support organisations would agree constitute a satisfactory diagnosis of myalgic encephalomyelitis.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/pdf/bmj00593-0058b.pdf

 

Source: Shepherd C. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Shonagh Scott and colleagues’ paper on general practitioners’ attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.’ Contrary to the authors’ claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.

Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/pdf/bmj00593-0058a.pdf

 

Source: Arber M. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/

 

Chronic fatigue syndrome. ME Association is honest about prognosis

Comment on: Chronic fatigue syndrome: prevalence and outcome. [BMJ. 1994]

 

Editor,-I wish to challenge the assertion by S M Lawrie and A J Pelosi that the prognosis given by some myalgic encephalomyelitis associations is nihilistic. In fact, the figures currently used by the ME Association are in line with the data on chronicity and disability found in various follow up studies of patients, including those of the epidemics of the ’30s, ’40s, and ’50s.

The chronicity of myalgic encephalomyelitis was documented as long ago as 1956 when Sigurdsson and Gudmundsson reported that, of 39 patients involved in the 1948 Icelandic epidemic, only five (1/3%) had recovered completely. Thirty two years later a re-examination of 10 Icelandic patients by Hyde and Bergmann showed that the recovery rate was no more than 20% (two of the 10).

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540204/pdf/bmj00440-0055d.pdf

 

Source: Howes S. Chronic fatigue syndrome. ME Association is honest about prognosis. BMJ. 1994 May 14;308(6939):1299-300. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540204/

 

Self help organization’s advice on myalgic encephalomyelitis

Comment on: Outcome in the chronic fatigue syndrome. [BMJ. 1992]

 

EDITOR,-I should like to assure Simon Wessely that neither the ME Association nor ME Action regards Michael Sharpe and colleagues’ findings in patients with chronic fatigue’ as another attack on its credibility. Nor do we see why the paper should “further sour relations between the organisations and the profession.”

As Wessely points out, the apparent relation between functional impairment and membership of a self help organisation at follow up does not mean that membership of such an organisation is responsible for the impairment. Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability.

As regards the potential damage resulting from inaccurate information about myalgic encephalomyelitis, it is worth emphasising that the quote that illustrates this came from Nursing Standard and not from a magazine for patients. The British organisations have long been unhappy with the way the media have portrayed the illness and reviewed existing research, and it is often extremely difficult to get erroneous or biased information corrected. Sometimes we get a right of reply, but usually we don’t.

Finally, I wish to make clear that our current advice on exercise and stress is based on sound scientific research, the recommendations of our medical advisers, and 50 years’ experience. Since our aim is to help patients it would be ridiculous for us to ignore good research and to stick instead to outdated explanations, speculation, or even prejudice. No one gains from such a narrow minded approach, least of all us.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/pdf/bmj00091-0063a.pdf

 

Source: Hume MC. Self help organization’s advice on myalgic encephalomyelitis. BMJ. 1992 Sep 12;305(6854):649. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/

 

Myalgic encephalomyelitis

Note: This letter appeared in the British Journal of General  Practice in April 1990.

 

Sir, During the past few months the Myalgic Encephalomyelitis Association has initiated a determined effort to find a cure for this devastating disease. A scientific and medical advisory panel has been formed under the chairmanship of Professor James Mowbray of St Mary’s Hospital Medical School, and in order to fund much needed research the Breakthrough Trust has been established and is already attracting money.

The scientific and medical advisory panel is anxious to stimulate new thought on research into the causes of myalgic encephalomyelitis, its possible treatments and, most important of all, research into finding a cure. Because of the complexities of the disease members of the panel would welcome new ideas and requests for grants from a wide variety of disciplines. Any such applications should be sent to me at the Myalgic Encephalomyelitis Association.

STEPHEN POWELL

Myalgic Encephalomyelitis Association

PO Box 8, Stanford le Hope

Essex SS17 8EX

 

Source:  S Powell. Myalgic encephalomyelitis. Br J Gen Pract. 1990 Apr; 40(333): 170. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371257/