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Extracts from "The Quarterly" Issue 13

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PATRON: THE COUNTESS OF MAR.

MEDICAL ADVISER: DR BETTY DOWSETT MB.ChB.Dip.Bact

SCIENTIFIC ADVISER: DR VANCE SPENCE PhD

 

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MEDICAL UPDATE
Stockport Group Newsletter
"HERMES" Dec 2001
Oh What A Bloody Mess!
Diagnosis and Treatment of ME
Talk given by Bolton GP Dr Andy Wright
At the Rudyard Hotel in October

Written by Sister Grace Higgins

Dr Wright initially concentrated on the latest views of what causes ME and explained that it was almost definitely caused by an enterovirus of which there are around 70 different kinds circulating in the community. People get these viruses all the time (for some it can be a sub-clinical infection you are not even aware of) but only a very small number of those who get enteroviruses go on to develop ME. The big question is WHY?

A major predisposition Dr Wright informs us is oxidative stress. Oxidative stress is due to an excess of free radicals in the body. Free radicals are essential to health, and are produced by the body to kill bugs and detoxify harmful compounds. However an excess of these can lead to ill health and it is identified now by many health professionals that ME is characterised by an excess of free radicals.

Any condition physical or psychological, which activates the body’s stress systems, will produce oxidative stress (excess free radicals) says Dr Wright. When a lot of oxidative stress is present and an enterovirus hits the body it can increase the risk of developing ME.

Dr Wright focused on a number of conditions, which produce oxidative stress and appear to have links with ME. Some of these were:

bulletAn excess of pro-inflammatory cytokines. Cytokines are hormones present in the white blood cells that help fight bacteria and viruses. Certain people make type 2 or pro-inflammatory cytokines: for example people with asthma, hay fever or eczema. An excess of these can be another risk factor to developing ME.
bulletProblems converting vitamins into their active form. For example Dr Wright found that about 50% of people he sees with ME couldn’t convert vitamin B12 taken into its active form methyl B12.
bulletOther viruses like glandular fever and Epstein Barr virus can precede an enterovirus and increase the risk of ME developing.
bulletSticky blood – a study in the USA showed that a high percentage of people with ME have an inherited tendency to have coagulopathy (sticky blood).

Dr Wright concluded that if you get an enterovirus and have oxidative stress you could develop ME. This causes dysfunction in the hypothalamus in the brain, which in turn has an effect on the hormonal and immune systems. These systems feed back to the hypothalamus and a vicious circle starts where the person’s health can spiral downwards.

As part of Dr Wright’s management of ME he attempts to identify and remove as many biological stresses as possible. He uses blood video microscopy to identify problems and formulate a management plan to renew the integrity of the nervous, hormonal and immune systems. He believes in an integrated approach using nutritional, herbal and hormonal treatments alongside medicine.

 

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-25% Art Club-

Draw your own Picasso

By the Co-ordinator of the Art Club

Due to popular demand, here’s another look at pure contour drawing. Also know as blind contour drawing, this is where you look only at the subject while you’re drawing, not at your paper. (Angle your body and head around so that you can’t see the marks you’re making with your pen or pencil. Or hold another sheet of paper with the hand you don’t draw with, to block your view of your work till it’s complete.) Trace the outlines, or contours, of your subject with your eyes, a bit at a time, and recreate those curves and lines on your paper, slowly, carefully, and thoughtfully.

What marvellous miracle will this mysterious drawing process produce when you’re finished, and you finally take a look?

Well, nine times out of ten, the results look like a squashed spider hidden under an old shoelace. But, every now and again, you’ll produce something really rather wonderful. Either way, the process itself is an incredibly useful drawing exercise, because it trains you to focus totally on the subject. It teaches you how to see, in the way that an artist needs to see.

What makes a good subject for pure contour drawing? Anything, really – last time, we looked at ordinary household objects, like telephones and shoes. But why not have a go with people? If you work from magazine or newspaper photographs for practise, you can use the magazine or newspaper photographs itself to block your view of your work – hold it between you and your drawing while you’re working.

...and here's a picasso (oops, pure contour drawing), I did earlier...

 

 

If you are a member of the 25% M.E. Group and would like to join the Art Club, please email enquiry@25megroup.org  for further details.

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REPORT: THE MELVIN RAMSAY LECTURE

Dr Abhijit Chaudhuri, FATIGUE 2002 CONFERENCE, 17-18.5.2002, London.

NEUROLOGY, NEUROLOGISTS AND CHRONIC FATIGUE SYNDROME (by DM Jones).

 

Dr Chaudhuri's lecture was the highlight of this conference.  As Clinical Senior Lecturer in Neurology, University of Glasgow, and Consultant Neurologist, Institute of Neurological Sciences, he had worked with Professor Behan's CFS group, runs a weekly Fatigue Clinic and is involved in ME/CFS research.  He was awarded the 2002 Melvin Ramsay Medal. 

At first he spoke about Chronic Fatigue - a symptom rather than a disorder, associated with stress and anxiety (Neurasthenia in the past), somatization and depression.  Chronic fatigue was associated with several medical diseases, e.g. cancer, medications, SSRI withdrawal, specific nervous system infections (e.g. Post Polio Syndrome, Post Lyme Disese Fatigue), systemic viral infections (e.g. ME/Neuromyasthenia and Post Viral Fatigue Syndrome).   

A broad definition of CFS excludes other fatiguing medical diseases, but includes post-viral fatigue, neuromyasthenia and ME ("CFS/ME").  It does not reliably exclude all psychiatric causes of chronic fatigue, e.g. somatization.  Neurogenic fatigue was sufficiently distinct from somatizing fatigue, depression and deconditioning, he said.  Neurogenic and 'non-neurogenic' patients can be identified. - ME by definition requires a new onset and fluctuates in severity. 

The hallmark of CFS/ME was overwhelming fatigue after acute onset.  The condition fluctuates in severity and has physical and mental aspects.  It is associated with post-exertional fatigue, muscle pain, autonomic nervous system symptoms, sleep disorder, subtle immunological changes etc; often patients suffer from a mild allergy, e.g. asthma or food sensitivities.  90% of patients prefer the term 'M.E.'.   

He then spoke about the history of CFS/ME.  Finser in 1856 recorded a Coxsackie virus epidemic; another one was recorded by Ofjord in 1865; there was von Economo and others who recorded the 1917-21 outbreaks of influenza and Encephalitis Lethargica, which involved chronic dysfuncion of the basal ganglia and related organs.  In 1956 the Lancet reported a new clinical entity: 'Benign Myalgic Encephalomyelitis' and in 1978 Dr Melvin Ramsay recorded 'Epidemic Myalgic Encephalomyelitis' or 'M.E.' in the BMJ.  Both M.E. and neuromyasthenia are classified as neurological diseases by the WHO.  Between 1979-88 'Post-Viral Fatigue Syndrome' was popular, in 1988 'CFS' was introduced and in 2002 we talk about 'CFS/ME'.   

Epidemic outbreaks included those in Switzerland (1937-39), described as 'abortive poliomyelitis', the Icelandic epidemic of 1948-49, described as 'Akureyri Disease', district epidemics in Adelaide (1949-51).  There had been outbreaks in schools.  With Post-Viral Fatigue Syndrome the average estimated incubation period was 5 days; a 6% attack rate was consistent and Dr Melvin Ramsay had described these outbreaks as 'An endemic disease subject to periodic outbreaks of an epidemic kind, characterized by consistent symptoms and signs'. 

In 1970 McEvedy and Beard introduced the concept of 'Mass Hysteria/Neurasthenia' for these outbreaks (re-evaluating the Royal Free Hospital outbreak), which was opposed by the neurologist Dr Dinsdale.  Recently 'CFS/ME' was described as a 'non-disease' in the BMJ.  'Non-diseases' are described as the creation of a medicalized society for people with normal symptoms - these people suffer because their symptoms are accepted. - Professor Peter Behan, Glasgow, was involved in an epidemiological study, NMR spectroscopies, muscle biopsies; he found evidence of enterovirus persistence and neuro-endocrine changes.   

Dr Russel Lane, London, and Professor Leslie Findley, Romford, had given dedicated service. - Fatigue in CFS/ME was central in origin, affecting the lungs, circulation, heart rate, cardiac output, blood flow in muscles; the metabolism was disturbed; there were fibre type changes, nerve excitation due to contraction coupling (sodium/potassium).  It affected the brain with regard to effort, drive and concentration.  Deconditioning, depression and somatization could occur.  Mitochondrial problems were shown in ME patients and very clear changes can be seen in the morphology.  It was necessary to look at brain functions. 

He then spoke about clinical features of central fatigue, characterized by 'Impersistence of motor activity' (i.e. easy fatiguability) and of mental activity (i.e. easy distractibility).  There was evidence of systemic infections.  Investigations looking at the neuro-anatomy of fatigue in ME/CFS includes MR spectroscopy of the left basal ganglia.  He described results of a small study and concluded that highly significant increases in choline resonance were found in CFS/ME patients. This was equal to increased turnover of glial cell membranes and three paediatric cases had similar changes. - During the Q+A session the next set of experiments was discussed, involving glial cells, probably in Coxsackie B virus.  Dr Chaudhuri said CFS/ME was one of the most important chronic neurological diseases, requiring clinical research, which should be given equal priority to that of cancer, stroke or MS.  Dedicated service provision should be set up for every 500 CFS/ME patients.  He is supported by the Barclay Research Trust.

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HELPFUL TIPS

Bath Genie

By a member of the 25% M.E. Group

 

I am more or less bedbound, i.e. I can go to the loo by myself but I find bathing or showering, even with help, impossible. That is because I cannot sit up without my head supported for long enough.

To overcome this problem I was having bed baths on a weekly basis and having my hair washed in an easy-shampoo blow up basis.

Now though, I have discovered a fairly new product, the Water Genie, which means I can have a 15-minute hot shower whilst lying down on the bed.

The Water Genie consists of a tank on wheels which the carer fills with hot water from the taps. (It makes irritating bleeps whilst filling so we close the doors and then I can’t hear it). This is then wheeled to the bedside. I lie on a large blue rubber bath, which is inflated around me. (Nasty noise for two 15-second bursts). Then all the hoses are connected, the machine switched to shower and I am showered by a hand held shower hose and head. The water is continuously pumped from the bath to the bathroom and down the bath or the loo.

It takes quite a while to set up and clear away. There is also some noise and I have to move from the side of the bed to the other, a couple of times so it is obviously no use if you cannot move at all but, for me, it has been wonderful. After three years of bed baths I thought I’d never feel clean again and it’s great to be washed in hot, running water.

The machine is horrifically expensive (about £1,600) but social services have bought it for me and provide a bath nurse twice a week to use it.

   

For information on this product contact: - Genie Care Ltd, 25 Sea Lane, East Preston, Littlehampton, West Sussex, BN16 1NH. Tel: 01903 733377/Fax: 01903 850165. Email: sales@geniecare.com

Website: www.geniecare.com

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