From PubMedCentral (U.S. National Library of Medicine), free full-text —
The Ontario Ministry of Health and Long-Term Care recently released the interim report1 of a task force charged with providing recommendations on 3 symptom-based conditions that have both shared and distinctive features (Box 1): myalgic encephalomyelitis–chronic fatigue syndrome (ME-CFS), fibromyalgia (FM), and environmental sensitivities–multiple chemical sensitivity (ES-MCS)...2
...[Problematic] attributes and the lack of proven treatments and clinical practice guidelines have led to decades of uncertainty regarding diagnosis, unnecessary investigations, ineffective treatment, and unmitigated suffering.
Nevertheless, as noted in the report, recent insights reveal both the need and opportunities for finding solutions. First is evidence underscoring the prevalence of these conditions in Canada and their effect on health care use and employment. Second is mounting evidence of biological mechanisms that might lead to effective treatments. These insights, including those summarized within this article, deserve wide dissemination in the primary care community….
Sections in the above-introduced Recent insights into 3 underrecognized conditions Myalgic encephalomyelitis–chronic fatigue syndrome, fibromyalgia, and environmental sensitivities–multiple chemical sensitivity by
Howard Hu, MD MPH ScD
Professor of Environmental Health, Epidemiology, Global Health and Medicine and Founding Dean of the Dalla Lana School of Public Health at the University of Toronto in Ontario;
Cornelia Baines, MD MSc
Professor Emeritus in the Dalla Lana School of Public Health at the University of Toronto
include: ■ Prevalence and costs ■ Biological mechanisms: ME-CFS and FM ■ Stigma and meagre funding: ES-MCS ■ Future steps ■ References ■
The article was published in Can Fam Physician. 2018 Jun; 64(6): 413–415 [PMCID: PMC5999262 ■ PMID: 29898928] discussing the Sept 2017 Ministry of Health’Task Force on Environmental Health recommendations.
The Future Steps section begins with mention:
...the Canadian Institutes of Health Research announced the results of a ME-CFS planning and dissemination grant competition,15 a harbinger for important potential future funding of basic research. The US National Institutes of Health [previously] announced 3 ME-CFS Collaborative Research Centers with more than $6 million in funding in 2017.16 With respect to ES-MCS, there is a growing body of research being published by investigators in Europe and Japan, which has provided evidence supporting the involvement of neurobiological,17,18 metabolic,19 and genetic susceptibility factors.20
and outlines concrete steps proposed in the Interim Report, first:
...to establish a foundation for an effective, patient-centred system of care in Ontario (Box 2).1 It is also now working on convening experts on all 3 conditions to establish case definitions and subsequently to create clinical practice guidelines that will be valuable both for everyday recognition and management and for formulating a basis for research.
Among the 4 main recommendation areas at the above Box 2 link:
1. Change the conversation and increase understanding and recognition of these conditions
- Recommendation 1.1: Make a formal public statement recognizing ME-CFS, FM, and ES-MCS
• The task force recommends the MOHLTC make a statement recognizing ME-CFS, FM, and ES-MCS, reinforcing the serious debilitating nature of these conditions, dispelling the misperception that they are psychological, and making a commitment to improving care, education, and support for caregivers.
- Recommendation 1.2: Establish academic chairs focused on ME-CFS, FM, and ES-MCS
• The task force recommends that the MOHLTC fund academic chair positions in clinical environmental health focused specifically on ME-CFS, FM, and ES-M
The References section lists 20 high-quality publications that look like constituting useful ammunition for patients and their physicians fighting for solid science and good care in the U.S. and beyond, not Canada alone. Starting with the pdf of the the Task Force report, most are free full-text via links or via PubMedCentral. Print-outs or on-line access should be possible for the rest via public libraries, community-college and university libraries, local medical libraries in tax-supported hospitals and possibly other hospitals in your area, and —if you are a concerned physician or allied health professional or have one— via existing subscriptions or purchase at PubMed-linked abstract pages.
Articles related to the one diaried above can be found at its PubMedCentral linked-page — you’ll see lists of “Similar Articles” and “Related Information” at the right margin there, amongst which, for example, a PubMed abstract translated from Spanish (published in Vertex. 2016 Jul;XXVII(128):252-255) Fibromyalgia and myalgic encephalomyelitis: The oxygen clue
In recent years, different authors have described various musculoskeletal oxygenation alterations in patients with fibromyalgia with or without myalgic encephalomyelitis. These patients suffer from meteor-sensitivity worsening their symptoms in lower atmospheric pressure climates (decreased oxygen pressure). They also respond successfully to hyperbaric chamber treatment (increased oxygen pressure), and to coenzime Q10 intake (improved use of oxygen). Having reviewed these findings, oxygen therapy is postulated in higher concentration and pressures to relief the symptoms of fibromyalgia with or without myalgic encephalomyelitis...
and at the right margin of THAT ‘oxygen-clue page are listed additional “Similar Articles” and additional “Related Information”.
In order to keep current, I use PubMedCentral on a reasonably frequent basis (among other resources) by typing fibromyalgia[Title] into the search bar at the site, or clicking on Advanced just below the bar, which produces this more-customizable search page. Another good free full-text source with some overlap with PMC is Public Library Of Science .org. Google scholar is useful too, and commenters probably have additional sites and resources they might link. The limitations of wikipedia are exemplified by the Multiple chemical sensitivity article, the content of which has been heavily dominated by one particular individual who vigorously edits out material not in line with his (I assume it’s a him) objectively obsolete opinions, not only in the form of properly referenced professional findings but also in deleting See Also sections and content, external links except for those he prefers, and so on. Friends of mine have done some covert tests at that article in by adding high-quality material and timing how long it takes before that material disappears. The wik articles on FM and ME/CFS don’t greatly impress me either, but at least seem less agenda-driven.
Anyone doing a serious review of these subjects today will find that these disorders are global, and in the third world these patients are among the first to die alongside casualties of war and natural disaster, simply from being too disabled to manage survival, their illnesses erased along with their existence.
Two related items found today:
◼ UK National Health Service will update classification system to reflect that M.E. is neurological disease | 06 August 2018
Chronic fatigue syndrome classified under Neurological disorder in SNOMED CT International Edition August 1, 2018 by admindxrw
—
SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings.
Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology which is now retired. SNOMED CT UK Edition is scheduled for adoption across all NHS clinical settings by 2020.
In SNOMED CT terminology system, disease and disorder terms are not arranged in chapters, as they are in ICD-10 and ICD-11. Instead, terms are arranged within a hierarchical relationship of parent and children concepts (or supertypes and subtypes).
The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included as Synonym terms.
Chronic fatigue syndrome has historically been located under the Parent Concept: Multisystem disorder...
and this, titled Press Release: Two teenagers hit by devastating severe M.E. reveal the brutal reality of life with the disease | 08 August 2018 from the ME Association, United Kingdom, in which is probably the best brief description of life with all three of these diagnoses:
...Dr Charles Shepherd, medical adviser to the ME Association, said: “It is an invisible illness. When you see us, we might not always look ill, but when our symptoms flare, the effects are obvious.
“It can feel like a constant flu, the smallest exertion can floor us, our bodies are painfully sore, restful sleep eludes us, light and noise are intolerable, and ‘brain fog’ causes confusion.
“M.E. remains a hidden disease. There is no known cure and no effective treatment – and it can lead to greater functional impairment than multiple sclerosis or cancer...
A few more related, possibly useful items:
- Tai Chi Beats Aerobic Exercise for Fibromyalgia - March 22, 2018 from medscape (a free-to-all professional site, just have to register, do’able the first time you click a link of theirs).
- CDC Launches New ME/CFS Guidance for Clinicians - July 13, 2018 — ibid.
- Low-dose Naltrexone Explored as Option for Chronic Pain - March 16, 2018 (medscape, in site coverage of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) Clinician Summit 2018 — also “Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome' “ and “Much Can Be Done to Ease 'Chronic Fatigue Syndrome' Symptoms”)
- Chronic Fatigue Syndrome Linked to Low T3 Syndrome — March 29, 2018 (medscape plain-English article with link to the published research full-text)
- Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy — PubMedCentral April 2018
- Multiple Chemical Sensitivity Review of the State of the Art in Epidemiology, Diagnosis, and Future Perspectives — PMC Feb 2018
- American College of Rheumatology Fibromyalgia pages.
- Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey — PLOS @ PMC June 2018
And some earlier MCS and related items, keeping in mind that many professionals may assume older material must automatically be obsolete, and/or there may be latter research contesting findings (especially if BigPharma saw advantage in funding such research … if my skepticism can be forgiven:
- Allergic Contact Dermatitis from Mercapto Compounds 2006 “Despite being well-known allergens, mercaptobenzothiazole and its derivatives continue to be widely used in natural and synthetic rubber, in the mining industry, and in a variety of nonrubber products...” reaction to which nevertheless is often knee-jerk categorized as latex allergy or vinyl allergy, especially in healthcare settings.
- Metabolomics as a Tool for Personalizing Medicine - 2012 Update “Numerous factors in conjunction with an individual's genetic make up will determine predisposition to disease, adverse or beneficial effects of drug treatment or therapy, and disease progression. A major limitation of current clinical measures is that the disease phenotype, which is comprised of the genotype and other environmental factors, is underestimated. Rather, each disease is treated similarly even though the disease process is highly complex. Methods that evaluate the interaction of genotype and environmental factors would likely be a better indicator of patients' response to medical treatments. The omics technologies, specifically metabolomics, will play a major role in the movement towards personalized medicine. Metabolomics is phenotype driven and should provide better clinical biomarkers...”
- Fibromyalgia and overlapping disorders: the unifying concept of central sensitivity syndromes. Yunus MB, Semin Arthritis Rheum. 2007 Jun;36(6):339-56. Epub 2007 Mar 13. Print out the full-text pdf from https://www.breathesleepandbewell.com/articles/fibromyalgia-and-overlapping-disorders-the-unifying-concept-of-central-sensitivity-syndromes.pdf — 18 pages, of which the last 6 ½ are footnotes/references to sources — they may seem extraneous but print them out anyway, they’re the evidence of validity of well-researched concept. More at this Google Scholar link, including some pdfs for some publications not otherwise free-access.
- History of Atopy May Predict Serious Adverse Drug Reactions 2012
- Chemical Intolerance Common in Primary Care Patients 2012 “A new study has found that chemical intolerance is prevalent among primary care patients, yet is rarely diagnosed. The study, published [free full text] in the July/August issue of the Annals Family Medicine, notes that routine use of a simple questionnaire may help identify these patients more effectively.
Using the Quick Environmental Exposure and Sensitivity Inventory (QEESI) [http://www.qeesi.org/] screening tool, David Katerndahl, MD, from the University of Texas Health Science Center, San Antonio, and colleagues identified 20.3% of 400 adult patients screened who met the criteria for chemical intolerance...”
- A cross-sectional study of self-reported chemical-related sensitivity is associated with gene variants of drug-metabolizing enzymes Environmental Health 2007 6:6