|
|
|
|
|
|
Extracts from "The Quarterly" Issue 15
Maintaining Blood Sugar The following tips and ideas were sent in by a member of the 25% M.E. Group and relate specifically to foods which help to balance sugar levels. Pearl Tapioca
(without sugar) Place a small amount with natural mineral water (is best) and leave in the fridge over night. Next day, put in fine mesh sieve and pour boiling water over it – it’s now ready to eat. It goes like jelly – also good for children with allergies. Can also make Sago in a similar way. Bacon
Rice Pasta Hummus
Mail Order Food!
Farm assured British meat – no gluten, eggs,
milk (although does contain soya): For wheat/corn/gluten/dairy/sugar/egg/yeast-free
foods Also gluten and dairy-free chocolate available
from: These contacts were all sent in by one of our members. She says the chocolate is very good, and tastes quite sweet so if you are okay with soya flour – carob confectionary that is gluten and dairy free, no added sugar, non-hydrogenated fat and hand made (vegan/veggie safe) - then this is the answer, especially for all those chocoholics out there. (The ED – it has been very difficult to keep the staff away from D & D Chocolate’s website!) If anyone has any further ideas for mail order food which may be of interest to people with severe M.E. please email them to webmaster@25megroup.org They can then be included in future newsletters and on this site!
Broader Lands and Better Days Lessons from the AACFS conference 2003 On the science, the excellent overview of the biochemistry by Dr Suhadolnik explored the biochemical processes that are altered in ME/CFS, while a range of presentations illustrated several aspects of ongoing biomedical investigations. These included.... The work by Dr Suhadolnik's group at Philadelphia into dysregulation of the 2-5A/RNase L pathway, particularly the potential use of RNase L fragments or their ratios as biomarkers of the illness The observations by Dr Kennedy (Scotland), Dr Racciatti (Italy) and Prof Pall (Washington State) of increased oxidative stress (which, when added to previous reports, imply that increased oxidative stress is one of the most well-documented changes in ME/CFS) The phenomenological reports by Dr Natelson (New Jersey) of spinal fluid abnormalities, and by Dr Spence (Scotland) of abnormalities of acetylcholine clearance in the skin The nitric oxide/peroxynitrite theory which is now receiving considerable attention as a viable etiologic theory of ME/CFS (Prof Pall, Washington State). In addition, the oral presentations by Dr Behan (Scotland), Dr Gaffney (Minneapolis) and Dr Vernon (Atlanta), describing their results from gene expression profiling, raise the possibility of objective measures from microarray technology. Progress Can Be Made Despite these advances, biomedical research into ME/CFS has been meagre, given that its prevalence (somewhere between 200 and 400/100,000 in developed countries) exceeds that of several illnesses which nevertheless have a higher public profile, attracting far more sympathy and resources. The number of poster presentations and oral presentations at the 2003 AACFS conference (44 and 47 respectively, down from 72 and 41 respectively in 2001, and 57 and 46 respectively in 1999) reflect the relatively low level of medical and scientific interest in this illness. There are probably many reasons for this, including the controversial nature of the field, the clinically-diverse nature of the illness, and an intellectual inertia among clinicians and work-a-day scientists. However, the central problem is surely lack of funding, especially over the medium to long term. Finite Resources For these reasons, there is a growing realisation that for biomedical investigation to prosper, funding will have to come from not-for-profit organisations and charities, such as MERGE, and private benefactors. In effect, the funding strategy for ME/CFS research will have to mirror that of cancer research, which obtains 85-90% of its funds from private sources. A daunting thought. Yet, privately-funded research - bringing fresh ideas and new blood - is commonplace in other chronic illnesses, and ME/CFS need be no different. In truth, there is no alternative if we want biomedical research to move forward. In Churchill's words of 20th August 1940: "in full flood, inexorable, irresistible, benignant, to broader lands and better days". Dr Neil Abbot, March 2003
Newsletter Theme for Issue 15 June 2003
We asked members to send in any humorous stories and experiences they may have had connected to ME (we thought there had been too much doom and gloom already in 2003 and wanted to add a light-hearted note to give members a chuckle!). Many thanks to those who sent in their tales of mishaps and experiences – they certainly gave us a laugh. We hope you find them amusing too!)
“How confused can one get? – X-rated (Or how to brighten up the day of a bored radiographer!!)”
A funny incident happened to me at the time my diagnosis was being made. I had a very long appointment with a very good specialist in a private hospital. He spent over two hours examining me so I was there for the best part of the morning. When I arrived by cab I had already become exhausted and was finding it difficult to follow his questions. He decided to send me for an x-ray, which was not far away from his consulting room. I was so totally confused a nurse had to help me get there. Upon arrival in radiography, the radiographer said, “this is for a chest x-ray so strip from the waist up”, showed me to a cubicle and gave me a robe. I started taking my shoes off and odd bits of clothing and then failed to understand what I had to do next. My mind was saying that the radiographer had said to strip from the waist down and I thought this must be a new technique for x-raying chests, lungs etc. I duly appeared with my top half fully dressed and nothing on from the waist down. She only just managed to refrain from laughing and told me to strip from the waist up. This made me even more confused and I thought then that perhaps I ought to put clothes on the bottom half but I lost track of the situation and I turned up in the radiography room without a stitch of clothing on. The radiographer took pity on me and gave me a gown to wear. Previous to that escapade my closest friend spoke to me several times a week and when she realised I was getting dressed each day she could not understand how I could possibly achieve it with being in such a confused state and asked me if I were sure that I had got the right clothes on in the right places. Well, she had a point because I did upon occasions put my clothes on inside out and didn’t realise it until rather too late. These were situations, which arose right at the very beginning when I was getting the diagnosis in 1993. Just before the diagnosis of ME, I used to do my usual social rounds of going to parties and dinners at the weekends and one day I turned up at an event, drank half a glass of wine and proceeded to feel extremely drunk much to the amusement of everyone around. Actually it was that experience that led somebody to believe that I probably had ME because I was also having spells of talking rubbish as well and using the wrong words. So I was drunk and disorderly on half a glass of wine. The next thing that comes to mind more recently is that I have acquired a new camera and I am taking quite a lot of photographs both medical and non-medical! My doctor has found this useful. I took a series of photographs of extremely bad eczema around my middle. Unfortunately clothes etc. were slipping in various directions so the views were not always exactly what I wanted. I have just realised that out of a series of six of these photographs only one has been printed. The other negatives are there but have not been touched. These are the only photographs not developed. I’m beginning to wonder if somebody thinks I am up to something really weird after developing a film of toes to show nail dystrophy, oedema, rashes etc. I do realise that films are looked at from time to time these days in case they contain photography of children being abused. Well that’s the end of that. I hope you find that little bit about the hospital visit amusing enough. It was certainly an embarrassing enough occasion!
Ooh Betty! – And the Bed from Hell!
Last year we decided to buy an electronic elevating bed, with the hope that it would help me to sit up. The supplier came out to the house and I chose a very nice pine bed. Although it was necessary for mum to do the talking with the supplier to save me the exhaustion, neither of us thought to ask the obvious question, “How high is the bed?” The day the supplier and his partner came to set up the bed was very exhausting for all of us. Dad carried me into my brother’s room, which mum had blacked out for me beforehand, in the evening dad carried me back into my bedroom and everything was wrong with the bed. My biggest problem was that my new bed was four inches higher than my old one. I use a commode that is right next to my bed. My legs still work to transfer myself on and off the loo, but I can’t walk or stand, neither could my legs manage to negotiate the extra height. I tried it once and told mum I couldn’t do that again – so we had to raise the loo higher! Dad found some plywood and some bricks to make a platform with, I also have limited reach with my shoulders, and there are various things on the floor, strategically placed around the bed that I need to be able to pick up. Of course these items were now too low. Mum called downstairs to bring up two bricks and later again for two more bricks. Right so what are my options?
My first reaction when I saw my new bed was “can this bed go back?” fortunately the supplier generously agreed to exchange the bed for one custom made to the height of my old one. But I had a very exhausting three weeks before they came and swapped the beds over. Mum kept getting the giggles over the situation, saying it was like something from a Frank Spencer comedy – “Ooh I just need two more bricks.” And as for me – well I didn’t doubt there was potential for high comedy in it. But for the first two weeks I was not finding it the slightest bit funny and it was such a relief to be four inches lower again
Exploring the Potential of ME By A Member of the 25% M.E. Group
I have heard it said that becoming chronically unwell or disabled as a result of a sudden illness is a sub-conscious way of turning one’s back on life and opting out of responsibilities. I would phrase it differently. Rather, it forces the individual to face life in its true reality, unencumbered by artificial trimmings. It certainly is not the easy option, if an option is what it is. There is no person immune from the potentiality of illness or disability, or both. In our halcyon days, we are all guilty on occasions of “looking the other way” when confronted by images we feel to be uncomfortable or threatening. We find it difficult to contemplate the possibility of ever succumbing to chronic illness or even the seemingly ultimate betrayal of our bodies’ physical disability. We may even, at times, sustain ourselves in the misguided belief that all and any disease we may contract can be cured by the magic bullet of miracle drugs and we may continue to fool and comfort any surfacing doubts with this fantasy pseudo-solution. However, whether we like it or not, we are all possible candidates, no matter how unpalatable this fact may be. When physically assertive, we self-impose unrealistic expectations and assume our bodies will permanently sustain us on full power, anything less deemed unacceptable. A breakdown of physical health can therefore feel like a huge personal failure, when suddenly most of life’s framework and props are obliterated. Having lived with ME for many years now, contrary to popular belief, the passing of time does not make it easier to endure. Being thirty-something when I became ill and debilitated, my then expectation, encouraged by well-meaning medics, was that in time I should recover but as the years passed I realised that this may not be a certainty. With any outside socialising no longer an option I felt desperately bereft and found this whole episode a crushing experience, swamped by its own attendant misery of isolation. The disillusionment I felt of once valued friendships disappearing into oblivion were, for a while, overwhelming, and the pain of my physical illness paled in comparison. I had to face overwhelming feelings of emotional anguish whilst I grieved my lost abilities and shattered dreams. There were times when I felt that being unable to physically and emotionally escape from my feelings was a curse. I grew to recognise that if I hoped to remain buoyant, I would have to reassess my options and find a way of using my newfound circumstances as a vehicle to move forward. Not to, would allow all aspects of my pain to take refuge and I knew this could ultimately destroy me. At this point in time, I made a conscious decision not to allow myself to become diminished by my predicament, but to somehow find the strength to adapt. I also knew, with certainty, that whilst I could not greatly influence my physical situation, I would always have emotional control as to how I chose to live with the challenge. The urgent need to adapt when sudden change is imposed is often fiercely battled against, but when eventually we do surrender, it is usually discovered that the acceptance of change brings its own rewards. For me, it was as if a primeval instinct took command and wove a fragile web of protection, allowing my pain to express and understand itself in a place beyond words, and the possibility of unveiling new spiritual subplots each day became an exciting adventure to wake up to. My journey of self-discovery revealed a new level of understanding, crowded with both agony and ecstasy. It also encouraged my ability to accept the best and worst in myself in equal measure, as both were slowly exposed with amazing clarity. My experiences of these recent years have, of course, changed my previously held perceptions which I now see as if reflected through a distorted mirror; and although I would not wish to pretend my life is continually filled with inspired splendour, I do nevertheless have my moments. The acquirement of self-knowledge brings with it great personal responsibility and I soon became unable to deny the existence of deep hurts, which although less painful when left unacknowledged, could no longer be ignored. In the midst of profound anguish, private truths are often revealed and, together with a deep sense of recognition that they have always been there, wait to be reclaimed by a receptive soul. I often ponder the words of C S Lewis, “experience is a brutal teacher” and wonder if there is any alternative way to learn certain lessons. I doubt it. However, from my despondency there grew a fundamental desire to form any future relationships only on the basis that they could incorporate an essential pre-requisite, Namely, that they would offer me wise and mature counsel. I gave myself permission to jealously guard my future emotional and spiritual well being by the prioritising and nourishment of my deepest needs. By disregarding many pre-existing and distorted values, I became endowed with an altered state of awareness, which I found emotionally liberating. Often, the acquirement of profound understanding defies rational analysis, and this was ultimately my experience. I had found a way of being alive. I can now look back with a celebratory smile because although my physical health remains progressively debilitating and limiting, I know with certainty that emotionally and spiritually I gained, and continue to gain, far more than I lost
Important Research on Organophosphates
News Release, 18th March 2003 By Robert Bradford, Senior Director of Communications at the Salk Institute, California Research from the Salk Institute for Biological Studies at La Jolla, California, has published findings which are the first to demonstrate a clear genetic link between neurological disorders (including Gulf War syndrome) and exposure to organophosphate chemicals. Organophosphates include household chemicals as well as chemical weaponry. The gene is one that scientists had not studied in previous efforts to find connections between these chemicals and neurological problems echoed many of the symptoms seen in Gulf War syndrome. The work was led by Dr Carrole Barlow, who stated that this study shows that there may indeed be a genetic connection that explains how exposure to pesticides can cause neurological disorders. It has now been shown that organophosphate exposure inhibits the activity of a gene called neuropathy target esterase (NTE). Different people may have different forms of the NTE enzyme, which explains why some people develop problems whilst others do not. The Salk team is working to detail how losing NTE function results in neurological changes. The study was published in the 17th March 2003 online version of Nature Genetics.
“Engaging with Myalgic Encephalomyelitis” By Professor Malcolm Hooper The findings of Dr Barlow above accord with the work of Professor Malcolm Hooper, whose most recent publication is entitled “Engaging with Myalgic Encephalomyelitis” but which also addresses the issue of Fibromyalgia, Gulf War syndrome, chemical sensitivities and autism (overlapping syndromes). This is a fully referenced 85 page document which contains colour photographs. It is dedicated to Derek Peters of the Northern Ireland Campaign for ME/CFS Healthcare (who sponsored the publication), to the late Dr John Richardson (a compassionate clinician and champion of more than 4000 ME sufferers for over 50 years) and to “all who suffer with and care for people with ME, who have taught me so much about courage, endurance and being fully human”. In his customary robust form, Hooper deals with facts, not beliefs or speculation and those facts are soundly based on biochemistry, which those who promote a primary psychiatric pathoaetiology will find difficult to refute with any degree of credibility. Hooper is explicit: in addition to his scientific investigations of sufferers (which he details in the text), he writes that he has examined much of the ME literature and is “fully persuaded of the organic nature of this illness and the folly and cruelty of attempting to regard it otherwise”. He explains how he came to be involved with ME and overlapping conditions, and how he discovered “new and disturbing areas of suffering, abandonment by conventional medicine, and heroic persistence in mutual support and the search for understanding, diagnosis, treatment and hope for the future”. There are 14 sections, with the Introduction covering not only prevalence and symptomatology, but also definitions of terminology, the deception which surrounds the terminology and classification of the disorder, psychiatrists who are committed to theories of somatisation, and various National Reports on the disorder. In discussing the UK CMO’s Report of January 2002, Hooper points out that it offered o psychological techniques of cognitive behavioural therapy and graded exercise as the preferred “treatments” and he states “Much evidence was ignored in reaching these conclusions”. He is similarly unenthusiastic about the draft document of 17th December 2002 from the MRC Research Advisory Group on CFS/ME and he quotes the searing comments of world experts who pointed out that the Royal Australasian College of Physicians’ Guidelines (upon which the MRC relies heavily) were flawed, biased, inaccurate and based on personal belief as opposed to evidence-based medicine, inadequate and potentially damaging. Hooper notes that despite all the published research which demonstrates an organic basis for these overlapping disorders, the situation in the UK remains one of denial and refusal to face all the evidence. The main thrust of the publication is a detailed explanation of the neuroendocrine – immune paradigm and the interactive web of biochemical / physiological deficits found in ME in both adults and children, and in related disorders. Hooper also identifies various investigations, including more specialised tests than basic screening, which are of major importance in diagnosis, together with treatment protocols that have a realistic prospect of success, including the removal of casomorphins (present in milk) and gliadomorphins (present in wheat). Hooper explains how normally, the cells of important membrane barriers that line not only the gut and the lungs but which provide the all-important blood-brain barrier have tight cell junctions that prevent many compounds from crossing these membranes, but that some chemicals are known to open these tight cell junctions, allowing free transport into the previously protected areas of what ought to be excluded compounds. When the gut wall has increased permeability, the opioid peptides (casomorphin and gliadomorphin) which would normally be excluded are absorbed into the blood stream, giving rise to diffuse symptomatology and systemic dysfunction. Inflammation of the gut is common among ME patients, as are allergic reactions to foods including gluten. The compromised gut facilitates the development of a gut dysbiosis which in turn can give rise to autoimmune diseases, with very significant and chronic damage to health. Hooper and his team have found that a test they were using in the Autism Unit at Sunderland (the IAG test, which stands for trans-indol-3-ylacroylglycine, a urinary metabolite of the essential amino acid tryptophan) was highly positive in Gulf War veterans. This led to the testing of those with ME and those with organophosphate poisoning, including other chemically poisoned people; in nearly every case, high levels of IAG appeared in their urine. For this to be happening means a dysfunctional gut and sufferers from these overlapping conditions show evidence of a “leaky gut”, ie. an increased permeability of the gut wall due to damaged membranes. Hooper explains very clearly how this happens in people who are described by certain psychiatrists as exhibiting “MUPS” (“Multiple unexplained physical symptoms”) and he shows that their multitude of symptoms are not “unexplained” at all and that they are entirely organic in origin. Hooper explains that he has been deeply impressed by the dedication, expertise and humanity of the people who have cared for and supported those with ME, some of whom have worked in the field of medical research despite having ME themselves. He makes special mention of Dr Vance Spence who, with Professor Jill Belch and Drs Faisel Khan and Gwen Kennedy, is part of a major research group at the Vascular Diseases Research Unit at the University of Dundee. The Dundee group has carried out a large research study involving ME patients, organophosphate farmers and Gulf War Veterans. Together with Dr Neil Abbot, Director of Operations at the Perth – based national charity MERGE (ME research group, whose website can be found at www.meresearch.org.uk) they provide rigorous clinical and scientific research that addresses these overlapping conditions. Spence has identified very extensive damage to the endothelium which lines all blood vessels: it was found to be swollen and stiffened as a result of severe damage: damage of this kind would compromise the blood supply to the deep capillary beds in all tissues, including nerve cells. This is an important and novel finding that provides new insights into the organic aetiology of ME. These findings are quite distinctive and very different to the damage found in either Gulf War Veterans or the OP poisoned farmers. Hooper stresses it is important to note that for these overlapping syndromes, there are objective tests that can uniquely characterize the related but individual syndromes. In summary, the IAG system involves the gut, brain, endocrine and immune systems: in ME, it is clear that the biochemical deficits are extensive. Detoxification is essential. Hooper sets out the basis for the neurological damage produced by a common mechanism but by different insults, biological or chemical, producing symptoms common to these overlapping syndromes, including ME.
This is a vital and compelling publication. Copies may be obtained (price £4.00 plus £1.10 postage) from Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, School of Sciences, University of Sunderland, Sunderland, SR2 3SD, UK.
|
|
Copyright © 2004 The contents of these webpages are copyright. Last updated 17 May 2006 |
