support groups – American ME and CFS Society

Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study.

Abstract:

Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID share some clinical and social characteristics. We predicted that this would lead to an increased interaction between pre-pandemic members of a ME/CFS online support community and a long COVID community.

We performed a mixed-methods retrospective observational study of the Reddit activity of 7,544 users active on Reddit’s long COVID forum. From among 1600 forums, pre-pandemic activity specifically on a ME/CFS forum is the top predictor of later participation on the long COVID forum versus an acute COVID support forum.

In the qualitative portion, motives for this co-participation included seeking mutual support and dual identification with both conditions. Some of this effect may be explained by pre-existing ME/CFS possibly being a risk factor for long COVID and/or SARS-CoV-2 infection being a cause of ME/CFS relapse. The high rate of ME/CFS patients seeking mutual support on a long COVID forum speaks to the long-suffering experience of these patients not feeling heard or respected, and the hope of some ME/CFS patients to gain legitimacy through the public’s growing recognition of long COVID.

Source: William U Meyerson, Rick H Hoyle. Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study. medRxiv 2023.06.30.23292087; doi: https://doi.org/10.1101/2023.06.30.23292087 https://www.medrxiv.org/content/10.1101/2023.06.30.23292087v1 9 (Full text available as PDF file)

Support amid uncertainty: Long COVID illness experiences and the role of online communities

Abstract:

Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored.

Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.

Source: Russell D, Spence NJ, Chase JD, Schwartz T, Tumminello CM, Bouldin E. Support amid uncertainty: Long COVID illness experiences and the role of online communities. SSM Qual Res Health. 2022 Dec;2:100177. doi: 10.1016/j.ssmqr.2022.100177. Epub 2022 Oct 4. PMID: 36212783; PMCID: PMC9531408. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9531408/ (Full text)

Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: A survey

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and has been linked to a higher prevalence of depression and anxiety in this population [3]. There are many mental health benefits associated with participation in in-person support groups; however, it is unknown if these benefits translate to online support groups [5].

Purpose: To examine the perceived impacts of participation in online support groups on depression, anxiety and quality of life among people with ME/CFS.

Results: Responses (n = 76) to an online survey indicated positive and negative experiences with participation in online support groups. Positive experiences included a sense of belonging, validation, supportive friendships and feelings of positively impacting others. Negative experiences included jealousy, decreased hope and optimism and disagreement regarding treatment strategies.

Conclusion: Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS. No significant impacts on anxiety were found. Overall, participants reported engagement in online support groups to be a positive experience.

Source: Samantha Morehouse, Krystal Schaible, Olivia Williams, Ellen Herlache-Pretzer & Stacey Webster (2021) Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2021.1950406

A UK based review of recommendations regarding the management of chronic fatigue syndrome

Abstract:

OBJECTIVES: Chronic fatigue syndrome (CFS) is a controversial illness, with apparent disagreements between medical authorities and patient support organisations regarding safe and effective treatments. The aim of this study was to measure the extent of different views regarding treatments, comparing patient support organisations and medical authorities in the UK.

METHODS: Two independent raters analysed two groups of resources: UK patient support websites and both medical websites and textbooks. A 5-point Likert scale was developed with the question ‘With what strength does the source recommend these treatments?’ The various treatments were divided into the following four groups: complementary and alternative medicine (CAM), pharmacological, rehabilitative, and pacing therapies.

RESULTS: There were significant differences between the scores for patient support organisations and medical sources for all 4 treatment groups. The results for supporting CAM were 74% (patient group) vs 16% (medical source) (p<0.001), 71% vs 42% for pharmacological (p=0.01), 28% vs 94% for rehabilitative (p<0.001) and 91% vs 50% for pacing treatments (p=0.001).

CONCLUSIONS: There were substantially different treatment recommendations between patient support organisations and medical sources. Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews.

Source: Mallet M, King E, White PD. A UK based review of recommendations regarding the management of chronic fatigue syndrome. J Psychosom Res. 2016 Sep;88:33-5. doi: 10.1016/j.jpsychores.2016.07.008. Epub 2016 Jul 17. https://www.ncbi.nlm.nih.gov/pubmed/27521650

Comment

Ellen M Goudsmit 2016 Aug 16 12:55 p.m.

It should be noted that the PACE trial did not assess pacing as recommended by virtually all patient groups. This behavioural strategy is based on the observation that minimal exertion tends to exacerbate symptoms, plus the evidence that many with ME and CFS cannot gradually increase activity levels for more than a few days because of clinically significant adverse reactions [1]. It does not make any assumptions about aetiology.

The authors state that “It should be remembered that the moderate success of behavioural approaches does not imply that CFS/ME is a psychological or psychiatric disorder.” I submit that this relates to CBT and GET and not to strategies such as pacing. It might be helpful here to remind readers that the GET protocol for CFS/ME (as tested in most RCTs) is partly based on an operant conditioning theory, which is generally regarded as psychological [2]. The rehabilitative approaches promoted in the UK, i.e. CBT and GET, tend to focus on fatigue and sleep disorders, both of which may be a result of stress and psychiatric disorders e.g. depression. A review of the literature from the ‘medical authorities’ in the UK shows that almost without exception, they tend to limit the role of non-psychiatric aetiological factors to the acute phase and that somatic symptoms are usually attributed to fear of activity and the physiological effects of stress.

I informed the editor that as it read, the paper suggests that 1. patients have no sound medical source to support their preference for pacing and that 2. the data from the PACE trial provides good evidence against this strategy. I clarified that the trial actually evaluated adaptive pacing therapy (a programme including advice on stress management and a version of pacing that permits patients to operate at 70% of their estimated capability.) The editor chose not to investigate this issue in the manner one expects from an editor of a reputable journal. In light of the above issues, the information about pacing in this paper may mislead readers.

Interested scientists may find an alternative analysis of the differing views highly illuminating [3].

[1]. Goudsmit, EM., Jason, LA, Nijs, J and Wallman, KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: A consensus document. Disability and Rehabilitation, 2012, 34, 13, 1140-1147. doi: 10.3109/09638288.2011.635746.]

[2]. Goudsmit, E. The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME? Online 18th March 2016. http://www.axfordsabode.org.uk/me/ME-PDF/PACE trial the flaws.pdf

[3]. Friedberg, F. Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? Fatigue: Biomedicine, Health & Behavior, 2016, 4, 3, 127-131. http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1200884

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition.

RESULTS: We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted in-person office visits as part of education outreach, which contributed to patient referrals.

CONCLUSIONS: Referrals from healthcare providers and self-referrals from the patient support group were important to registry enrollment. The number of potentially treatable conditions that were identified highlights the need for continued medical management in this population, as well as the limitations of registries formed without clinical examination. Education initiatives were successful in part because of partnerships with local organizations.

Source: Brimmer DJ, Maloney E, Devlin R, Jones JF, Boneva R, Nagler C, LeRoy L, Royal S, Tian H, Lin JM, Kasten J, Unger ER. A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome. BMC Res Notes. 2013 Aug 2;6:309. doi: 10.1186/1756-0500-6-309. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3750716/ (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

Prospective observational study of treatments for unexplained chronic fatigue

Abstract:

BACKGROUND: Unexplained chronic fatigue is a frequent complaint in primary care. A prospective observational study design was used to evaluate whether certain commonly used therapies for unexplained chronic fatigue may be effective.

METHOD: Subjects with unexplained chronic fatigue of unknown etiology for at least 6 months were recruited from the Wisconsin Chronic Fatigue Syndrome Association, primary care clinics, and community chronic fatigue syndrome presentations. The primary outcome measure was change in a 5-question fatigue score from 6 months to 2 years. Self-reported interventions tested included prescribed medications, non-prescribed supplements and herbs, lifestyle changes, alternative therapies, and psychological support. Linear regression analysis was used to test the association of each therapy with the outcome measure after adjusting for statistically significant prognostic factors.

RESULTS: 155 subjects provided information on fatigue and treatments at baseline and follow-up. Of these subjects, 87% were female and 79% were middle-aged. The median duration of fatigue was 6.7 years. The percentage of users who found a treatment helpful was greatest for coenzyme Q10 (69% of 13 subjects), dehydroepiandrosterone (DHEA) (65% of 17 subjects), and ginseng (56% of 18 subjects). Treatments at 6 months that predicted subsequent fatigue improvement were vitamins (p = .08), vigorous exercise (p = .09), and yoga (p = .002). Magnesium (p = .002) and support groups (p = .06) were strongly associated with fatigue worsening from 6 months to 2 years. Yoga appeared to be most effective for subjects who did not have unclear thinking associated with the fatigue.

CONCLUSION: Certain alternative therapies for unexplained chronic fatigue, especially yoga, deserve testing in randomized controlled trials.

Source: Bentler SE, Hartz AJ, Kuhn EM. Prospective observational study of treatments for unexplained chronic fatigue. J Clin Psychiatry. 2005 May;66(5):625-32. http://www.ncbi.nlm.nih.gov/pubmed/15889950

The search for legitimacy and the “expertization” of the lay person: the case of chronic fatigue syndrome

Abstract:

Some “diseases” appear to be recognized first by sufferers. At times these diseases may be disclaimed by medical doctors and elusive to scientific categorization and description. In these cases sufferers may organize themselves together in support groups and lobby for money to finance the discovery of diagnostic markers that would legitimate and medicalize the constellation of symptoms that they experience.

Chronic fatigue syndrome is such a disease; and it is characterized by varied and changing symptomatology. Its diagnostic markers are in the process of being refined. Presently, its diagnosis primarily originates in reports of subjective experience of extreme fatigue. Often-times people diagnose themselves after attending a support group and find a doctor through a support group network who believes in the disease. Sometimes, people then return to their own family doctors with information and try to teach their doctors about what they believe to be the nature of their disease, its prognosis and treatment.

Through such paths as described in the paper, patients become “experts”: they may often know more about the illness than doctors and non-suffering others. This paper moves beyond the experience of chronic illness to describe the processes through which people seek confirmation and legitimation for the way that they feel and in a sense become the “experts.”

Source: Clarke JN. The search for legitimacy and the “expertization” of the lay person: the case of chronic fatigue syndrome. Soc Work Health Care. 2000;30(3):73-93. http://www.ncbi.nlm.nih.gov/pubmed/10880009

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

EDITOR,-Shonagh Scott and colleagues’ paper on general practitioners’ attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.’ Contrary to the authors’ claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.

Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/pdf/bmj00593-0058a.pdf

Source: Arber M. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/

Chronic fatigue syndrome. Self help groups give valuable support

Editor,-Tony Delamothe’s article on myalgic encephalomyelitis was refreshingly objective,’ but this cannot be said of S M Lawrie and A J Pelosi’s editorial.2 Delamothe questions whether “medical journals keep doctors in the dark.”‘ We believe that the editorial was not even handed.

Within two weeks of publication of the article and editorial our paper on self help groups was published.3 Lawrie and Pelosi’s editorial stated, “if an illness is attributed entirely to external sources there will be little scope for self help.”2 Our results were quite different. The Moray Firth myalgic encephalomyelitis self help group has existed for the past seven years and has had one coordinator (AG). A representative sample of members was surveyed by questionnaire in 1988, 1989, and 1992; response rates were 44/53 (83%), 19/34 (56%), and 42/49 (86%) respectively. The results (table) contradict the statement in the editorial.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/pdf/bmj00440-0054c.pdf

Source: Ho-Yen DO, Grant A. Chronic fatigue syndrome. Self help groups give valuable support. BMJ. 1994 May 14;308(6939):1298-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/