Organizations – Page 2 – American ME and CFS Society

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

Excerpt:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness — systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical — not a psychiatric or psychological — illness.

This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report’s most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

Source: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb. The National Academies Collection: Reports funded by National Institutes of Health. https://www.ncbi.nlm.nih.gov/books/NBK274235/ (Full article)

ME/CFS: Discrimination Within Social Institutions

Abstract:

OBJECTIVES: To examine the nature and impact of discrimination experienced by persons with ME/CFS when engaged in interactions with social institutions.

METHOD: The initial phase of the research involved a thorough review of the available literature to establish the interaction of those with ME/CFS with social institutions. Social institutions are the complex social forms that are found within governments, family, universities, hospitals, incorporated entities, legal systems and other social structures and organisations. This paper focuses on the incidence, nature and effect of discriminatory behaviour that participants experience during interactions with social institutions..

In the data collection phase, a pilot study involving an investigation of the Australian perspective of the experience of ME/CFS was obtained. This was expanded in the main study and participants were provided the opportunity to reveal their stories. Participants were required to have a diagnosis of CFS, ME or ME/CFS from a medical practitioner and self-select themselves as compliant to the Fukuda CFS Criteria, Canadian ME/CFS Criteria and Ramsay ME Criteria.

A background questionnaire was provided to give an insight into the history of the participant, particularly interactions with social institutions and pathways to diagnosis. The interview drew upon the questionnaire for guidance, with the primary questions derived from information gained from the literature review. The interviews were transcribed, coded and the relationships and issues identified in order to guide the second phase of the research which was conducted further into the study.

The pilot study involved 3 participants, followed by a second, more comprehensive phase comprising 16 participants. Stories emerged from within those interviews with respect to interactions with society and these were broken down to reveal particular themes relevant to those experiences.

RESULTS: A total of 19 interviews were conducted. The average age of participants was 41.95 with all 14 females and 5 male participants. The mean duration of the condition was 17.66 years, with 8.35 years from onset until diagnosis. A number of issues arose, revealing an insight into the nature of the relationships that exist between persons with ME/CFS and various social institutions. Participants reported interactions that were both positive and negative. Such interactions were directly impacted by the diagnosis of ME/CFS. All participants had experienced some form of discrimination, with the majority being negative discrimination. Within these experiences, issues such as knowledge and understanding of the condition played a significant role in the discriminatory interaction. Misconceptions about the condition played a primary role. Abuse (verbal, physical and mental), withholding or withdrawal of goods and services, individual avoidance, social isolation, adverse employment decision, prescription of no or inappropriate treatment and the like were levelled against participants throughout their and/or a lack of knowledge or desire to go about it.

CONCLUSION: Participants with ME/CFS who engaged with social institutions were subject to various factors (such as abuse, attitudes, behaviours, comments, misinformation, misunderstandings, beliefs and policies) that directly or indirectly arise because of their diagnosis and the contested nature of the condition.

These factors play an important role in the form of discrimination that participants experienced across all social institutions. Positive discrimination was provided in the form of assistance, management, attitudes, comments and accommodations. Participants revealed circumstances in which discrimination was negative, including the refusal of assistance or accommodation, derogatory comments, malicious treatment and behaviours, inappropriate physical environments (due to noise, smells, access, furniture, line ups, public transport, etc.), inappropriate policies or procedures (eg onerous requirements, poor time frames, inability to be accessed remotely) or misinformed statements, treatment that was adverse (ie insufficient, inappropriate, adverse, deficient or damaging, and resulted consequences that were harmful to the physical, emotional or other interests of the participant). Of significance was the incidence of bullying behaviour that was associated with discrimination.

Those with more visible symptoms and presentation of ME/CFS (ie wheelchair and bed bound) received greater assistance at times, while those with more invisible symptoms and presentation found access to assistance a more difficult and at times impossible task.

Negative experiences had an adverse impact upon the person’s condition as well as their emotional wellbeing On occasions the impact and effect was sufficient to constitute trauma. The ability to respond to discriminatory practices was limited by knowledge of process and procedure, the health constrictions that impact the ability to take action, the availability of advocates to assist in such action, and the knowledge of the condition of those taking the action or making decisions. On no occasion was a participant able to follow through on a formal anti-discrimination complaint.

Source: Geoffrey Hallmann, Dr Rosanne Coutts, Dr Yvonne Hartmann Southern Cross University. ME/CFS: Discrimination Within Social Institutions. [Abstract from the IACFS/ME 2016 Conference]

Web usage data as a means of evaluating public health messaging and outreach

Abstract:

BACKGROUND: The Internet is increasingly utilized by researchers, health care providers, and the public to seek medical information. The Internet also provides a powerful tool for public health messaging. Understanding the needs of the intended audience and how they use websites is critical for website developers to provide better services to the intended users.

OBJECTIVE: The aim of the study was to examine the utilization of the chronic fatigue syndrome (CFS) website at the Centers for Disease Control and Prevention (CDC). We evaluated (1) CFS website utilization, (2) outcomes of a CDC CFS public awareness campaign, and (3) user behavior related to public awareness campaign materials and CFS continuing medical education courses.

METHODS: To describe and evaluate Web utilization, we collected Web usage data over an 18-month period and extracted page views, visits, referring domains, and geographic locations. We used page views as the primary measure for the CFS awareness outreach effort. We utilized market basket analysis and Markov chain model techniques to describe user behavior related to utilization of campaign materials and continuing medical education courses.

RESULTS: The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC website. States with formal CFS programs had higher visiting density, such as Washington, DC; Georgia; and New Jersey. Most visits (71%) were from Web search engines, with 16% from non-search-engine sites and 12% from visitors who had bookmarked the site. The public awareness campaign was associated with a sharp increase and subsequent quick drop in Web traffic. Following the campaign, user interest shifted from information targeting consumer basic knowledge to information for health care professionals. The market basket analysis showed that visitors preferred the 60-second radio clip public service announcement over the 30-second one. Markov chain model results revealed that most visitors took the online continuing education courses in sequential order and were less likely to drop out after they reached the Introduction pages of the courses.

CONCLUSIONS: The utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information. Public health programs should consider analytic methods to further public health by understanding the characteristics of those seeking information and by evaluating the outcomes of public health campaigns. The website was an effective means to provide health information about CFS and serves as an important public health tool for community outreach.

Source: Tian H, Brimmer DJ, Lin JM, Tumpey AJ, Reeves WC. Web usage data as a means of evaluating public health messaging and outreach. J Med Internet Res. 2009 Dec 21;11(4):e52. doi: 10.2196/jmir.1278. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2802568/ (Full article)

A new look at chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

It has been 3 years since the Chief Medical Officer reported on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and the time has come for a thorough investigation by an All Party Group drawn from the House of Commons and the House of Lords. We have received many written submissions and are engaged in taking oral evidence in 2-h sessions, which we open to the public as well as interested groups. The group has received a fantastic response to its requests for written evidence over the past few months.

Questions that arise for a government response are the lack of provision and support for patients with CFS/ME, the issue of the clinical definition of CFS/ME, the need for a diagnostic test for CFS/ME, effectiveness of the National Institute for Clinical Excellence guidelines, and criteria used to decide which treatments are best for patients with CFS or myalgic encephalomyelitis.

Source: Gibson I. A new look at chronic fatigue syndrome/myalgic encephalomyelitis.J Clin Pathol. 2007 Feb;60(2):120-1. Epub 2006 Aug 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860614/ (Full article)

Myalgic encephalopathy–an inexact report with doubtful conclusions

Norwegian Knowledge Centre for Health Services was recently commissioned to clarify the scientific basis for the diagnosis and treatment of Myalgic encephalopathy (ME). The report is unfortunately imprecise and conclusions questionable.

Myalgic encephalopathy (ICD-10: G 93.3) is a disease or a spectrum of diseases which are described in many clinical reports internationally. Patients have symptoms of multiple organ systems, often with widespread pain and neurocognitive disorders, and they have an abnormal response by physical or mental activity, with sometimes extreme fatigue and worsening of symptoms and long recovery time. The etiology is unclear.

You can read the rest of this comment here: http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner

Source: Eriksen W. Myalgic encephalopathy–an inexact report with doubtful conclusions. Tidsskr Nor Laegeforen. 2006 Aug 24;126(16):2144; author reply 2144-5. [Article in Norwegian] http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner (Full article)

Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members

Abstract:

OBJECTIVE: To examine the benefits and problems of a chronic fatigue syndrome (CFS) and fibromyalgia (FM) support organization as reported by its participants.

METHODS: Active members (n = 32) and inactive members or dropouts (n = 135) of a regional support organization for people with CFS and FM completed a 26 item questionnaire by telephone interview or by self-completion and postal return.

RESULTS: The most frequently endorsed benefits of membership were illness legitimization (67.8%), finding out helpful new information (66.4%), and feeling understood by others (62.2%). Lower frequency endorsements were given to: helped to find (35.0%) or deal with (38.5%) doctors, and helped to improve my illness (36.4%). The most frequently reported reasons for dropping out were inconvenient location (37.8%) or time (37.0%), too much negative talk or complaining (33.3%), too sick to attend (28.8%), and illness or coping improvement (29.6% each). The active-member group showed significantly higher (p < 0.04) symptom severity scores and less illness improvement (p < 0.01) in comparison to the inactive/dropout group.

CONCLUSION: This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts.

Source: Friedberg F, Leung DW, Quick J. Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members. J Rheumatol. 2005 Dec;32(12):2416-20. http://www.ncbi.nlm.nih.gov/pubmed/16331774

Immunologic aspects of chronic fatigue syndrome. Report on a Research Symposium convened by The CFIDS Association of America and co-sponsored by the US Centers for Disease Control and Prevention and the National Institutes of Health

Abstract:

Chronic fatigue syndrome (CFS) is a serious health concern affecting over 800,000 Americans of all ages, races, socioeconomic groups and genders. The etiology and pathophysiology of CFS are unknown, yet studies have suggested an involvement of the immune system.

A symposium was organized in October 2001 to explore the possibility of an association between immune dysfunction and CFS, with special emphasis on the interactions between immune dysfunction and other abnormalities noted in the neuroendocrine and autonomic nervous systems of individuals with CFS. This paper represents the consensus of the panel of experts who participated in this meeting.

Data suggest that persons with CFS manifest changes in immune responses that fall outside normative ranges, but current research does not provide definitive evidence on whether these immune abnormalities are a cause or result of the illness. It has become clear that CFS cannot be understood based on single measurements of immune, endocrine, cardiovascular, or autonomic nervous system dysfunction. This panel encourages a new emphasis on multidisciplinary research into CFS.

Source: Gerrity TR, Papanicolaou DA, Amsterdam JD, Bingham S, Grossman A, Hedrick T, Herberman RB, Krueger G, Levine S, Mohagheghpour N, Moore RC,Oleske J, Snell CR; CFIDS Association of America. Immunologic aspects of chronic fatigue syndrome. Report on a Research Symposium convened by The CFIDS Association of America and co-sponsored by the US Centers for Disease Control and Prevention and the National Institutes of Health. Neuroimmunomodulation. 2004;11(6):351-7. http://www.ncbi.nlm.nih.gov/pubmed/15467349

Patient organisations in ME and CFS seek only understanding

Comment on: General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. [BMJ. 2004]

Editor—To compare general practitioners’ attitudes to patients with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) and those with irritable bowel syndrome was disappointing in the study by Raine et al.1 Particularly disappointing was that the study was conducted in the months after the chief medical officer recognised—with considerable attendant publicity—the severity and impact of chronic fatigue syndrome or myalgic encephalomyelitis on the lives of those affected.2

One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. That the authors labelled patients’ organisations “pressure groups” was interesting in itself.

The organisations cover a range of views on the illness and the solutions needed. This organisation carries out an information role for patients and professionals and provides a range of services no different from that of any other medium sized charity (www.afme.org.uk). We campaign vigorously of course for recognition of chronic fatigue syndrome and myalgic encephalomyelitis and for funding to remedy years of neglect in this field.

We are not “antidoctor” and our members mostly view their general practitioners as supportive and understanding but faced with a complex illness and lacking a toolkit to help.

Far from patients’ organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment.

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/

Source: Clark C. Patient organisations in ME and CFS seek only understanding. BMJ. 2004 Jul 10;329(7457):112-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/ (Full article)

The report of the Chief Medical Officer’s CFS/ME working group: what does it say and will it help?

Abstract:

Chronic fatigue syndrome (CFS) sometimes known as myalgic encephalomyelitis or encephalopathy (ME) has long been a controversial topic. This year has seen the publication of a report from an independent working party set up by the UK Chief Medical Officer (CMO) to make recommendations for the management of the condition. The report makes a number of general recommendations about the provision of appropriate care and services. The more controversial issues of what to call the illness, the nature of the illness and what treatment should be recommended are all addressed, but in the form of compromise rather than resolution. To the extent that this report is a step towards highlighting the needs not only of patients with CFS but the larger group of patients with symptom-defined conditions, it is to be welcomed. As a guide to management it raises as many questions as it answers. Much remains to be resolved before guidance that is both evidence based and acceptable to all parties is achieved.

Comment in: Medically unexplained symptoms. [Clin Med (Lond). 2002]

Source: Sharpe M. The report of the Chief Medical Officer’s CFS/ME working group: what does it say and will it help? Clin Med (Lond). 2002 Sep-Oct;2(5):427-9. http://www.ncbi.nlm.nih.gov/pubmed/12448589

Chronic fatigue syndrome in children. Patient organisations are denied a voice

Comment on: Managing chronic fatigue syndrome in children. [BMJ. 1997]

Editor—Action for ME is one of the two patient support groups referred to in “editor’s choice” in the issue of 7 June. The organisation, which represents 8000 members, accepts that any illness can have both physical and psychological components. In fact, for the past five years it has offered psychological support in the form of professional telephone counselling, and our journal has carried numerous articles testifying to a more complex understanding than the editor implies.

What we have a problem with, however, is some medical journals’ overemphasis on psychological factors when they refer to myalgic encephalomyelitis. Provocative features about hysteria and wandering wombs have not helped.1 Because of the possibility of cognitive malfunction,2 we believe that getting better is more complex that letting go of “symptom dependency” and “therapeutic nihilism”—terms that are frequently used in research attempting to show that abnormalities are not components of a primary pathological process but are secondary to behavioural aspects of myalgic encephalomyelitis, such as reduced physical activity.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/pdf/9361554.pdf

Source: Jacobs G. Chronic fatigue syndrome in children. Patient organisations are denied a voice. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/