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This personal collection of links includes information about experimental treatments, theories and promising scientific research. Much of the information on this page could be regarded as rather "alternative" by sections of the medical establishment, and some is controversial. My aim is to make information accessible, and I am not in a position to recommend or endorse any particular approach or treatment.
This page: International treatment and research
News || General articles and collections
|| Miscellaneous interesting research & treatments ||
Fibromyalgia and pain || Role of
infections - Mycoplasma, rickettsia, Lyme etc || RNase-L
and Ampligen || Guaifenesin || Myofascial
Pain Syndrome, bodywork etc || Post-traumatic Fibromyalgia
|| Not "all in our heads" || Leaky
gut and food sensitivities || The FMS/CFS (ME) connection
|| Neurally mediated hypotension ||
Next page: Australian treatment and research
General
|| Research
at Newcastle University (Bioscreen) || Research
in Adelaide || Sydney
Researchers || Original
theories|| Pain
research || Other
articles || Role
of infections - Mycoplasma, rickettsia etc || Myofascial
Pain Syndrome, bodywork etc || Leaky
gut and food sensitivities
A Herpes Drug May Make Energy Soar for Chronic Fatigue Syndrome Patients (May 2006)
ME Sufferers in UK forcibly locked up in psychiatric wards (Sophia later died): Sophia Wilson; Lisa Masterson
Some of the abnormalities that have been demonstrated in ME/CFS - by Eileen Marshall and Margaret Williams (31st March 2006). A long list of physical, organic dysfunctions showing it's a real, bodily disease. From MEActionUK.
Current perspectives - review by Dr Michael Barratt of the ME/CFS Research Forum held at University of Adelaide, June 2005. The keynote speaker was Professor Kenny De Meirleir.
Gene expression and CFS - British researchers led by Dr Jonathan Kerr "believe they have pinpointed biological markers of chronic fatigue syndrome which could help develop a test and treatment for the condition." - BBC. See also the New Scientist article. The journal reference is Journal of Clinical Pathology (vol 58, p 823, 860).
Surgery, Anesthesia and CFS/FM/MCS - compiled by Melissa Kaplan. Useful page on a topic of concern to many.
The CFS Research Foundation's website now includes some full length versions of their research papers including those on Parvovirus B19 and gene expression.
Trends in CFS research - "one would think 130 or so ‘papers’ a year would be a sufficient number to guarantee real progress. It sounds, after all, like a lot of work is being done – enough one would think to give a CFS patient hope that before too many more years pass, significant breakthroughs in the understanding of and treatment for CFS will occur. A closer look at the ‘research’ cited in PubMed indicates this is far from true" - stats and details from Cort Johnson's CFS Phoenix site.
Download A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome [PDF 785K], edited by Joseph F John Jr, from the New Jersey CFS Association. Developed in association with the Academy of Medicine of New Jersey among others.
ME-NET from Europe now features a CFS/ME/FM 'Update' window, linking to this week's contributions to ME-NET and CO-CURE forums, as well as to Google CFS/ME/FM news alerts and the latest Medline CFS/ME/FM papers. The ME-Web library provides access to research databases.
The Biology of Chronic Fatigue Syndrome - by Anthony L. Komaroff MD. Editorial summarising the current evidence of physical abnormalities in CFS; from the American Journal of Medicine Volume 108, Issue 2, pages 169-171, February 2000.
Hypotheses on the cause of CFS - useful overview of the various theories, with links to more information; by Mette Marie Andersen, MD, from her C F S Information International website.
Research - overview of current and recent research, from The CFIDS Association of America.
The Co-Cure Reading Room - "a resource of reading materials on CFS, FM, MCS, GWS, and auto-immune conditions that have been published on the internet."
Remedyfind - a website where you can rate treatments you have tried, and see how people rate their experiences or what works and what doesn't.
See also articles on my Australia/New Zealand research page
Marshall Protocol - interview by Judy Williams with Queensland (Australia) GP Dr Gary Deed about the effectiveness of the Marshall protocol for people with CFS/ME.
Low Dose Naltrexone - "in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, and autoimmune diseases".
The Heart of the Matter: CFS and Cardiac Issues - fascinating and persuasive article by Carol Sieverling, about Dr Cheney's evolving theory that CFS is a reaction to Compensated Idiopathic Cardiomyopathy. "What you have is Compensated Idiopathic Cardiomyopathy." [Idiopathic: cause unknown; Cardiomyopathy: structural or functional disease of heart muscle] "And your primary means of compensation—now this is the big twist—are you ready? Have you got your seat belt on? The primary methodology for compensation for this disorder is in fact CFS itself."
Peering Beneath the Turbulent Waters of Chronic Fatigue Syndrome: Gene Expression Profiling Provides Hope - by Craig Maupin explains what this technique is about.
The Aetiology of ME : A personal hypothesis. By Rich Van Konynenburg. "I would like to propose a metabolic hypothesis for the pathogenesis of ME/FMS that I believe fits many of the observations. The essential idea is that the onset of ME/FMS occurs when a chronic partial blockade is inserted somewhere in the chain of reactions that make up the intermediary metabolism, i.e. the pathway involved in burning fuel and making ATP ..."
The English language section of Alfred Blasi's website explaining his protocol for Fibromyalgia treatment, consisting of mineral supplementation (a mixture of sodium, potassium, calcium and magnesium in a formula called Recuperat-ion).
Cardiac insufficiency hypothesis - Dr Martin Lerner and others. A page from the M.E. Society of America.
Chiari Malformation - from The CFIDS Association of America.
Carbohydrate Intolerance (aka Hypoglycemia or low blood sugar) - article about the Dr St Amand's low carbohydrate diet treatment for Fibromyalgia from the Chronic Illness Support and Research Association (CISRA)'s Synergy Health Newsletter.
Is CFS/FM due to an undefined hypercoagulable state brought on by Immune Activation of Coagulation? by D Berg, LH Berg, J Couvaras. One of several articles about CFS/FM from Hemex Laboratories.
A Letter From a Friend Who Suffers With CFS - outlines Dr. Poesnecker's theory of adrenal insufficiency and his treatment protocol.
Chronic Fatigue Syndrome in Children and Adults and its Connection to ADD/ADHD by Dr Michael J Goldberg. Among other issues this article discusses childhood onset CFS, the unsatisfactory nature of the CDC diagnostic criteria and the possible future role of "Immune Modulators" such as Kutapressin.
Jay A. Goldstein, M.D.’s Unique Treatment Protocol for Chronic Fatigue Syndrome & Fibromyalgia - by John W Addington at ImmuneSupport.com.
Karen Le Cour reports on her treatment with Dr Goldstein's protocol and one year later.
A Canadian GP explains what Dr Goldstein's book Betrayal by the Brain is about, and Cathy Collett gives an update, on the ME/CFS Society of Victoria's website.
A retired British doctor with CFS gives an overview of Dr Goldstein's protocol and some anecdotes.
Metabolic Health - Fibromyalgia, Hypothyroidism,
Thyroid Hormone Resistance - a website about Dr John Lowe's thyroid hormone
theory of, and treatment for, fibromyalgia.
Fibromyalgia Disability: Medical Evidence That Supports the New Neural Sensitization Paradigm - by Richard N. Podell, M.D. "Several lines of research now provide objective evidence of physical abnormalities in the pain signaling pathways of fibromyalgia patients."
Treatment of Fibromyalgia in detail - very helpful article by Dr Robert Bennett focussing on pain as the major problem in FM. "Currently, opiates are the most effective medications for managing most chronic pain states ...Opiates should never be the first choice for pain relief in fibromyalgia, but they should not be withheld if less powerful analgesics have failed." from the Oregon FM Foundation.
Fibromyalgia and chronic musculoskeletal pain research program at Kettering University (Flint, Michegan) is measuring brainwaves.
Extracts from Is Fibromyalgia a Central Pain State? from the Journal of Musculoskeletal Pain, as posted to Co-Cure. Author Dr Karl G. Henriksson concludes: "There is strong support for the notion that pain and allodynia/hyperalgesia in FMS have an organic cause. The hyperexcitability in the nociceptive nervous system is mainly due to changes in the CNS. Longstanding excitation of nociceptors and low threshold mechano-receptors in the muscle may initiate and maintain such hyperexcitability. The permanent changes constitute a disease. There are methods for objectively diagnosing this disease."
Fibromyalgia pain isn't all in patients' heads, new brain study finds (Science Daily - Source: University Of Michigan Health System) - Dr Clauw used MRI brain scans to show that people with FM really do feel more pain. More on this research: Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. from Arthritis Rheum 2002 May;46(5):1333-43
The muscle in Fibromyalgia - Rheumatology 2002; 41: 721-724. "What kind of changes in the muscle tissue produce pain? Is there any evidence that such changes exist in the muscle in fibromyalgia?" Evidence from muscle biopsies and other tests.
Norepinephrine-evoked pain in fibromyalgia - research paper by Manuel Martinez-Lavin et al (Mexico) This study shows that FM patients have norepinephrine-evoked pain, supporting the hypothesis that FM may be a sympathetically maintained pain syndrome.
See also articles on my Australia/New Zealand research page
Paper by Garth Nicholson, Kenny de Merlier and others from the Journal of Chronic Fatigue Syndrome suggesting that "a relatively large subset of CFS patients show evidence of bacterial and viral co-infections" - mainly mycoplasma, HHV6 and Chlamydia pneumoniae.
Cort Johnson on HHV6 and CFS - "The tale of the herpesviruses in CFS is a complex one; several were considered a possible cause of CFS at one time and aroused hopes that were subsequently dashed. Recent research suggests, however, the story may not at all be over….."
In Human Herpesviruses 6 and 7 in CFS: A Case-Control Study , Reeves and colleagues at the CDC say they found "no association between CFS and infection with HHV-6A, HHV-6B, or HHV-7" in a group of CFS patients (Clinical Infectious Diseases 2000;31:48-52). Reeves' study was "debunked" by Konstance K. Knox, Ph.D (says Gail Kansky in this report from the NCF Forum).
Research on Mycoplasma and Chlamydia and Rickettsia, on Dr Mette Marie Andersen's CFS Information International site.
Is Fibromyalgia caused by a Mycoplasma infection? - from Raintree Nutrition Inc.
Mycoplasma and Chronic Illness - interview with Prof. Garth Nicolson, transcript of a Chronic Fatigue Syndrome Radio Show, November 1999.
Mycoplasma resources - comprehensive and helpful information on the infection and its treatment from Sharon Briggs and the SHASTA CFIDS group in California. "Those who test positive for active infection with a Mycoplasma are realizing a tremendous improvement &/or recovery in their health with appropriate antibiotic treatment. This treatment is long term (1-2 years of continuous antibiotics) ...Since this form of treatment is so new for CFS, FMS and GWS, we are all involved in research of a sort."
Scientific Facts versus Fiction about Mycoplasma - this article by Dr Aristo Vojdani explains what mycoplasma are and suggests that one type of mycoplasma, Mycoplasma fermentans may contribute to the immune abnormalities found in CFS. From the Immunosciences Lab website.
Chronic Fatigue Illnesses - index of articles about mycoplasmal infections in relation to CFS, Fibromyalgia, Gulf War Syndrome and Rheumatoid Arthritis, from Dr Garth Nicolson's Institute for Molecular Medicine website.
The Bacteria Revolution (May-June1999) - online version of a Canadian Broadcasting Corporation radio show - "New discoveries by infectious disease specialists and new ideas from evolutionary biology suggest that previously unsuspected bacteria are responsible for a wide spectrum of human illness. " Part 1 focuses on Lyme disease.
Advanced Topics in Lyme Disease - Diagnostic hints and treatment guidelines for tick-borne illnesses by Joseph J Burrascano MD, on the LymeNet website.
The Road Back Foundation - "Important information for patients with Rheumatoid Arthritis, Scleroderma, Lupus, Polymyositis, Reiter's Syndrome, Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia or Juvenile Rheumatoid Arthritis" - about the infection theory (fact?) of these diseases and antibiotic treatment for them. Also news about the book The New Arthritis Breakthrough by Henry Scammell.
Frequently asked questions about antibiotic therapy - from A Legacy of Health: the life and work of Thomas McPherson Brown M.D - aimed at people with arthritis but may be useful for CFS. Includes information about Fibromyalgia and a connection with Lyme disease.
RED laboratories who perform the RNase L Protein Assay.
37 kDa RNase L from CFS Information International - summary, and links to key documents and background information
Mary Schweitzer's RNaseL Enzyme Dysfunction Disease (REDD) information center summary, and links to key documents and background information
Who is Calpain and why is he so mean to my RNaseL? Richard A.Holland explains how the test works, in plain language
The biology of chronic fatigue syndrome By Anthony L. Komaroff MD; Editorial, The American Journal of Medicine, Volume 108, Issue 2, pages 169-171 (February 2000) - includes a summary of the RNaseL research
Total Exposure: Expanded Model for RNase L Fragmentation in CFS Uncovered; The National CFIDS Foundation Announces the Use of Elastase Inhibitors as a Potential Treatment for CFS Patients - by Alan Cocchetto (2003). Update on the work of DeMeirleir and his colleagues.
Fibromeet - Nancy Medeiros' web site about Fibromyalgia and Dr St Amand's Guaifenesin Treatment.
Guaidoc.com - website based on Dr St Amand's new book What your doctor may NOT tell you about fibromyalgia - information about the protocol, research, order the book, support groups including mailing lists.
Article about Guai treatment from the Chronic Illness Support and Research Association (CISRA)'s Synergy Health Newsletter.
Guai Support Group - Aussie website of the international Guai-Support mailing list run by Tesa Marcon.
The Efficacy of Guaifenesin versus Placebo in the Management of Fibromyalgia - Dr Robert M. Bennett's study found no evidence to support the claims made for guai treatment.
Devin Starlanyl's Fibromyalgia & Chronic Myofascial Pain Syndrome website is probably the most popular source of information on these conditions. Includes a page of instructions for do-it-yourself Tennis Ball Acupressure . A page called "FMS & CMP: More Than Double Trouble" contains links to more info. (Here on my website I have an extract from Devin's first book which explains the basics about Fibromyalgia and Chronic Myofascial Pain Syndrome and trigger points.)
Trigger Points: Diagnosis
and Management by David J. Alvarez, D.O., and Pamela G. Rockwell, D.O.,
University of Michigan Medical School; from American Family Physician
Feb 15, 2002. Quite technical.
Trigger points are discrete, focal, hyperirritable spots located
in a taut band of skeletal muscle. The spots are painful on compression and
can produce referred pain, referred tenderness, motor dysfunction, and autonomic
phenomena. Trigger points are classified as being active or latent, depending
on their clinical characteristics. An active trigger point causes pain at rest.
It is tender to palpation with a referred pain pattern that is similar to the
patient's pain complaint.
The Myofascial Pain section of Dr Lowe's website has information on trigger points, myofascial therapy and related issues.
Identifying and Treating Myofascial Pain Syndrome - from The Physician and Sportsmedicine Online.
Fibromyalgia vs Myofascial Pain Syndrome - educating ourselves about the differences between these two syndromes, and Who can afford daily massage? - benefits of massage for fibromyalgia and trigger points, and advice on self-massage techniques - by Cynthia Webber from her Coping with Fibromyalgia website.
Myofascial Pain Syndromes - an article about trigger point pain and treatment by Dr Simon Strauss, from the MedicineAu website. "... The delineation of Chronic Benign Intractable Pain Syndromes of the Neck and Back as being Myofascial Pain Syndromes is of particular importance. These ... syndromes constitute a large proportion of the chronic pain population, who, because the diagnosis Chronic Benign Intractable Pain carried considerable psychological overtones, were frequently exposed to psychologically based therapies ... " - in other words, patients were told: "It's all in your head" !
Post-Traumatic Fibromyalgia - "a special type of fibromyalgia caused by trauma" - by Mark Pellegrino.
Review of Mark Pellegrino's book Understanding Post Traumatic Fibromyalgia, and information about his book From Whiplash to Fibromyalgia.
Valid Complaints or Malingering? Clinical Experiences With Post-Traumatic Fibromyalgia Syndrome by Thomas J Romano MD.
A report on a conference on FM, chronic pain and trauma (Bristol, UK 2001) from the Oregon FM Foundation.
The Fibromyalgia Syndrome: It's Not All In Your Head by Thomas W. Shinder, MD; on the CSSA website.
Psychological status in Fibromyalgia and Associated Syndromes - in this interview, pioneer FM researcher Muhammad B. Yunus, M.D. explains it's not "all in your head." From the CFS Days website.
Margaret Williams' article Consideration of some issues relating to the published views of Psychiatrists of the "Wessely School" in relation to their belief about the nature, cause and treatment of myalgic encephalomyelitis (ME). Includes Evidence that psychiatrists of the "Wessely School" are wrong and Tactics used by psychiatrists of the "Wessely School".
Wessely in his own words from MEActionUK.
Politics, Science, and the Emergence of a New Disease: The Case of Chronic Fatigue Syndrome - Jason et al discuss problems with the case definition for CFS, and the implications of this for epidemiology, diagnosis and recommendations for treatment.
Multiple Chemical Sensitivities under siege - "the chemical manufacturing industry has launched an anti-MCS campaign designed to create the illusion of controversy about MCS and cast doubt on its existence," argues Ann McCampbell, MD, Chair of the Multiple Chemical Sensitivities Task Force of New Mexico.
Treating leaky gut with digestive enzymes, by a retired British doctor with CFS.
Recent leaky gut syndrome research - from Marilyn K's website.
A natural fibromyalgia syndrome treatment protocol by Zoltan P. Rona MD. “The natural treatment of FMS requires an understanding and amelioration of the leaky gut syndrome phenomenon” - this article suggests a huge range of alternative remedies. From HealthLink.
Leaky Gut Syndromes: Breaking the Vicious Cycle - an informative article by Leo Galland, M.D., from HealthWorld Online.
Chronic Fatigue Syndrome (M.E.) - this article from the Amsterdam Kliniek deals mainly with the immune dysfunction aspect of CFS as expressed in the development of allergies and intolerances. One of several other articles of interest on this website describes how Hidden Food Sensitivities Still Go Unrecognized.
What is Leaky Gut Syndrome? - from the Autism Research Unit, University of Sutherland, UK.
FMS, CFS and Overlapping Conditions - from About.com.
Fibromyalgia: The Muscle Pain Epidemic - Is it ME by Another Name? by Leon Chaitow - from HealthWorld Online.
Overlapping Disorders: Chronic Fatigue Syndrome, Fibromyalgia Syndrome, Multiple Chemical Sensitivity & Gulf War Syndrome - by Albert Donnay, from the MCS Referral & Resources website.
Overlapping Syndromes - an article from the FM Network website explaining Dr Muhammad Yunus' theory of Dysregulation Spectrum Syndrome.
Miryam Williamson has also written an article about Dr Yunus and Dysregulation Spectrum Syndrome called A Unified Field Theory of Fibromyalgia and Related Illnesses.
Do You Suffer from Persistent Pain, Aching, Fatigue - pamphlet from the Chronic Syndrome Support Association explains the link between Fibromyalgia Syndrome and Myofascial Pain Syndrome, and its probable connection with Chronic Fatigue Syndrome (CFIDS) Multiple Chemical Sensitivity and Gulf War Syndrome.
Plunge in Blood Pressure Tied to Chronic Fatigue by Melissa Hendrickson - article about Johns Hopkins pediatrician Dr Peter Rowe's research on Neurally Mediated Hypotension. See also this interview with Dr Rowe from Our FM/CFIDS World.
Robyn's Neurally Mediated Hypotension resources - at Our FM/CFIDS World.
Low blood pressure information from the National Fibromyalgia Research Association, with abstracts by Dr Peter Rowe and Dr Michael Rosner.
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last revised 25 Nov 2007