[Susan Purry]

I think this is excellent. This was posted on the Co-Cure list. You can download the document from the website here: http://www.cfsresearch.org/cfs/research/treatment/36nf.htm in .pdf or html format. It's called "Chronic Fatigue Syndrome/ME and Fibromyalgia plus Associated Syndromes Evidence for their organic basis: A summary of the suggested underlying pathophysiologies and treatment approaches" and is written by Dr. Andrew J Wright MBChB DRCOG MRCGP DCH DIHomIf you can't face (or are unable to) reading all of it, you could just read this:

quote:In conclusion, we have direct evidence from good sources that these groups ofsyndromes share common factors, and that there is proof for their organic basis.In CFS/ME) it seems that we should see this as an illness probably caused byenteroviruses, acting on a body that is for many reasons already stressed biologically,with high pre-morbid levels of oxidative stress, resulting in high peroxynitrite levels.Other biological stressors may be the cause or add to this, such as IAG or these maybe mechanical, dietary, environmental, physical, infective or psychological.What seems important is that the blood-brain barrier becomes permeable allowingviral entry. Treatments should be aimed at identifying and removing these stressorsThis then could allow neurotropic viruses to cause the hypothalamic and otherdownstream hormone effects. There also exists a chronically activated immunesystem, which may result from the initial insult or co-existent microbial, or toxinoverload or a combination of the two. It seems that there is over-expression ofaberrant RNA, derived initially from an enterovirus, protected by a viral type coatwhich in the presence of LMWRNase L leads to extreme ATP depletion. Does thebody feel that it is being constantly infected by an enterovirus? Pollution and vaccineshave been suggested as a cause for the loss of control of HERV associated mRNAproduction. Following this hypercoagulability develops, causing problems in bothblood and lymph microcirculation� s. This hypercoagulability may arise from acombination of hereditary, immune mediated and oxidative stress pathways. We havechronic sympathetic system activation, from many causes.We then have a situation where the body is subject to a high degree of oxidativestress, probably the most damaging state in biology. I feel Fibromyalgia is mainly anillness of oxidative stress associated with spinal problems as outlined above. Multiplesubtle endocrine changes are also present in the CFSME/FM complex ,bothquantitatively in terms of hormone levels, and also qualitatively, with loss of circadianrhythmicity. Given the bi-directional flow of information between the nervous,endocrine and immune systems, we are presented with a perfect example of ChaosBiology. This results in a failure of homeostasis and homeodynamics. Simply stated, abody that cannot respond to any form of biological stress, be it environmental,infective, physical or psychological.Although some of the ideas I have presented are novel and controversial, I believe theoverall hypothesis has a sound base in science. We must remember that allexplanations for these groups of illnesses are at present speculative. However, thestudies demonstrating pathophysiology are not and neither are the results of treatmentprogrammes.I am afraid that as a profession, it seems we have shot ourselves in the foot again, andhave assumed psychological causation, because of our lack of knowledge. Medicalhistory is littered with illnesses that were thought to be psychogenic e.g. Tuberculosis,epilepsy and Hypothyroidism.We need to act quickly to repair the damage and work for funding for patients on theNHS.

Here's the Table of Contents of the paper:

quote:1) CV2) Foreword3) Organic v Psychiatric/Psychological Model4) Epidemiology5) Immune, Endocrine and Nervous System involvement6) Immunology and Toxicology7) Endocrinology8) Nervous System9) Hypercoagulability10) Mycoplasma11) Oxidative Stress12) Th1/Th2 shifts13) Treatments14) References

Snippets...

quote: Foreword from the author:--------------------------I have written this document in order to share information with colleaguesand patients. It is a technical paper but I hope to produce a lay readershipversion as soon as time allows.My experience in this field is based on more than 10 years of treating alarge number of patients in primary care, general medical out patientclinics, and in private practice.I am one of the Medical Advisors to Action for ME a, charity involved inhelping patients and their carers. I also sit on the research group of thatcharity. The charity has recently financed a literature and evidence searchto obtain as much information as is currently available about this group ofillnesses. I have collaborated in that research.I was also a member of the Reference Group of the Chief Medical Officer'sWorking Group on Chronic Fatigue Syndromes.Personal comments-----------------The paper is 45 pages long ( size:450KB ) and gives a detailed overview ofthe latest research/studies in the field op CFS/FM.It discusses research and treatment approaches from many CFS specialists,including Paul Cheney and provides a list of possible treatments toalleviate symptoms.The author also added his own experiences with each of the drugs/foodsupplements discussed.

quote:I am a firm advocate of the organic basis for these illnesses. I feel thepsychiatric/psychological models of the illnesses are incomplete and unable to explainthe underlying pathophysiology.

quote:It is interesting how often people who are so ill that they lookas though they should be in a hospice, are told to �pull themselves together and go fora walk�. Surely, we have all been taught to recognise when somebody is ill. Justbecause they are, 'Paper Perfect People,' i.e. all our standard tests come back normal,doesn�t mean we should disbelieve them.It is possible of course that we may not havedone the right tests. I believe the evidence set out below shows this to be largely true.

quote:I feel the reasons for the dominance of the psychiatric model is complex. Nonetheless,it is due in part to a way of thinking that has been practised by doctors for centuries.Patient attends with a set of problems.Doctor doesn� t understand and /or cannot help with the patient� s problems.Solution make the patient the problem and then you can forget about their difficultproblems.Although this is a simplification and might appear too rhetorical it does often happen.Secondly is the lack of information readily accessible about the organic basis of theillness.

 

[trbell]

I'm not sure though, why it's important that there be an organic basis if they haen't found a way to treat it?tom

 

[Susan Purry]

Hi Tom. To answer your question, and this is just my own opinion, it's important to know (if) there's an organic basis to these conditions because...... from a research point of view, knowing what is the problem is the first step towards appropriate management and effective treatment. I.e. knowing what the changes are that is happening in M.E/CFS (RNaseL, cytokine, chromosomes, HPA axis etc) will hopefully (!) lead to 'them' finding a way to treat the problem. ... from a patient's point of view, because it may help the continuing problem some people experience with their GPs who persist in their belief that the symptoms are due to psychological issues. Sometimes the interventions that result from this belief do patients more harm than good if the symptoms are not due to problems such as 'malingering', hypochondria, anxiety, or depression. In the short term, the 'treatment' a patient with M.E/CFS gets from a doctor will probably not change - because there isn't any effective intervention yet - but the attitude of the doctor to the patient, and even of the patient to their own symptoms will hopefully improve. It's also about countering what used to be the prevailing view of M.E/CFS. That's just my opinion though. Do you think it's important to know what the basis of the symptoms at this stage of managing the illness?

 

[Guest]

Tom..... this is one time that I have to agree with Susan. I have a very wise and progressive physician who has diagnosed me with this autoimmune syndrome. Just knowing that it ain't all in my head... is a relief. That, in itself... releases the anxiety.... it helps me to cope. And even if there is no cure for it yet.... reducing the anxiety and knowing we're on our way to discovering treatments.... is all I need to know to help me have a better day.Thank you Susan.... this is great Evie

 

[weener]

I'm a bit confused about this article. Can someone explain it to me in simple layman terms? Are they saying that this is caused by a virus? Thank you.