IACFSME 2021 Virtual Conference

Live Twitter feed here

https://twitter.com/user/status/1428362137919901711

 

Anyone attended today? I was curious as of anyone got some good take home message.

 

https://twitter.com/user/status/1428359820663418893

 

https://twitter.com/user/status/1428421200485634051

 

How can one prove direct infection of vagus nerve by HHV-6?

 

She was talking about theoretical examples, not actual cases if I understood correctly.

 

I will have to watch that presentation again to understand the context. At the moment, it seems like they are thinking of the final diagnosis and trying to walk back to try to understand how to get there. I may be wrong in thinking that, and i’d welcome them coming over to explain it.

 

I saw a post that elsewhere about this that concerned me and I’m now reading through the Twitter posts and have questions and concerns.

On this one ☝️ a question: is this accurate? If I am reading correctly it is from Dr. Nath’s talk.

I suspect my immune system is dysregulated, but was not aware that immune suppression would be the treatment.

 

Moved posts
MDedge Rheumatology Emerging data point to underlying autoimmunity in ME/CFS by Miriam Tucker

quote:
Emerging evidence suggests that autoimmunity plays a role in postinfectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and that targeting autoantibodies could be a promising treatment approach.

 

Also in Medscape. The article discusses treatment approaches as RituxME, CycloME, Immunoadsoption and Next-gen IgG-targeting therapies.
https://www.medscape.com/viewarticle/957987

 

13-page report on recent IACFS/ME conference by Drs Sarah J. Dalziel & Rosamund Vallings

https://www.dropbox.com/s/6bklk4cusz4wklo/Dr. Ros Vallings_ IACFS_ME 2021 conference notes.pdf?dl=0
or
https://www.mediafire.com/file/2aae...ings_+IACFS_ME+2021+conference+notes.pdf/file

 

ME/CFS Dependence on Social Institutions: Violence, Abuse, Neglect and Exploitation

• August 2021
• Conference: 2021 IACFS/ME Virtual Conference

Authors:
Geoffrey Hallmann

• ME/CFS Australia
  Jade Barclay , Rosanne Coutts

Abstract
Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to 250,000 Australians, reducing capacity to work and live independently, resulting in dependence on multiple social institutions. This is the first study of experiences arising out of ME/CFS patient interactions with social institutions.

Objectives: To identify the types of interactions with social institutions experienced by persons with ME/CFS in Australia.

Methods: A literature review was conducted to examine the key issues that impact people with ME/CFS and guide potential points of interaction with social institutions. Ethics approval ECN-08-146 was obtained and addressed potential physical and psychological harms to the participants and researcher (an insider researcher) – noting many studies overlook physical and insider harms. A total of 19 participants with a diagnosis of ME, MFS or ME/CFS were selected (including severe patients) using a purposive and snowballing sampling strategy from volunteers along the east coast of Australia between Brisbane and Melbourne, and were interviewed.

A pilot study of 3 interviews was utilised to refine the questionnaire and generate more open-ended responses. Recordings were transcribed. Notes and memorandums were recoded between interviews and preliminary issues/themes and connections evolved. Interviews were conducted to the point of thematic saturation.

Open coding of the transcripts was conducted manually, then within NVivo, where axial coding was applied. Following establishment of the tentative core/sub-core codes, selective coding was applied. Using a grounded theory approach, identified and emerging themes and categories were verified by participants and matched against extant and evolving literature the assess validity. Rigor was maintained via reflexivity, regular peer debriefing and review of transcripts and coding, feedback and cross checking.

Results: The participants revealed a variety of stories across multiple social institutions including interactions with health and medical, educational, employers, businesses, insurers, families, churches, welfare and other institutions. Four key themes were identified within these experiences – violence, abuse, neglect and exploitation (‘VANE’).

The most prominent stories involved interactions with medical and health providers, including doctors, nurses, allied health, ambulance and hospitals, where disbelief of the condition or psychological attributions influenced occurrence of VANE. Insurers contested the condition, resulting in consistent occurrence of policy default and dispute, leading to neglect and abuse.

VANE occasioned by family, partners and carers was experienced on a regular basis among the majority of participants. Institutional dependence meant some participants were unable to escape such an environment due to poor health or financial incapacity. Welfare institutions demonstrated neglect through inflexibility in procedures, application processes, attendance requirements, examinations, and office spaces, with no account for the condition.

Conclusion: The issue of VANE within disability is a significant concern that is common throughout Australian society. This study identified that VANE was commonly experienced by participants with ME/CFS when they interacted with social institutions, including medical, educational, insurance, families, and welfare. Given the vulnerability of people with disabilities, this study demonstrates that the perpetrators of VANE are often individuals and institutions the person with ME/CFS relies on for care and support.

https://www.researchgate.net/public...tions_Violence_Abuse_Neglect_and_Exploitation

 

Bookmarked. Thank you for sharing, glad that someone is looking at this.

 

Merged thread
Ventilatory Functioning During Serial Cardiopulmonary Exercise Testing in
People With and Without Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with activity-dependent reductions in metabolic and cardiac functioning, which in turn are associated with symptoms and signs of post-exertional malaise (PEM). However, ventilation at rest and with physical exertion in people with ME/CFS have not yet been quantified and compared to people without ME/CFS.
Objectives: To quantify ventilatory functioning at rest and during activity in people with and without ME/CFS

Methods: Each subject received 2 maximal CPETs on a braked bicycle ergometer that were administered 24 hours apart. Throughout each test, measurements of breath-by-breath gas samples, workload, heart rate, breathing rate, tidal volume, end tidal oxygen, and end tidal carbon dioxide were taken at rest, ventilatory anaerobic threshold (VAT), and peak exertion. Statistical analysis consisted of 2-way analysis of variance (group by test). Criterion for statistical significance of differences was α≤.05.

Results: Subjects were 37 women with ME/CFS and 38 sedentary women without ME/CFS. The groups did not differ in age and body mass index. There were significant main effects for group indicating lower measurements for workload, volume of oxygen consumed, and heart rate at VAT and peak. Breathing rate demonstrated significant main effects for group with lower measurements in the ME/CFS group at peak exertion. Minute ventilation and tidal volume also demonstrated significant main effects for group with lower in the ME/CFS group at VAT and peak exertion. There were significant main effects for test 1 versus test 2 for end tidal oxygen at rest, VAT, and peak; and for end tidal carbon dioxide for rest and peak. There were no significant group by test interaction effects for any measurement obtained.

Conclusions: People with ME/CFS demonstrate abnormal pulmonary measurements on CPET that may correlate with abnormal metabolic and cardiac functioning. Potential effects on pulmonary function of short-term PEM induced by CPET remain unclear.

pdf
https://workwellfoundation.org/wp-c...ithout-Myalgic-Encephalomyelitis-abstract.pdf

 

This is just an abstract, it is unclear if/when there will be a published manuscript.

 

are there sex differences? [i have in mind maureen hanson's mind-blowing metabolic slides a few years ago.]

[referring to above "Subjects were 37 women with ME/CFS and 38 sedentary women without ME/CFS."]

 

https://workwellfoundation.org/research-latest-news/

 

Presentation by Workwell.

Two Symptoms Accurately Identify Post-exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue [sic], 2021, Davenport et al

Background: The diverse manifestations of post-exertional malaise (PEM) may make it difficult to recognize. Development of brief, accurate instruments for detecting PEM is critical for progress clinically and scientifically.

Objectives: To develop a clinical prediction rule for PEM Method: 49 ME/CFS (Fukuda- or physician-diagnosed) and 10 healthy, sedentary subjects each completed 2 maximal cardiopulmonary exercise tests separated by 24 hours. During 5 different times (immediately and 24 hours after each test, 7 days from study initiation), subjects reported symptoms via an open-ended questionnaire. Two reviewers blinded to diagnosis classified responses into 19 symptom categories. Next, using receiver operating characteristics curve analyses, we calculated the area under the curve (AUC) value of each symptom category to predict group membership at each and any time point. A similar method was applied to determine the number of symptoms yielding the highest sensitivity and specificity. Finally, symptom categories with significant AUC values were entered into a binary logistic regression model to determine which symptom categories best distinguished ME/CFS from control subjects. A two-tailed p-value ≤ 0.05 was deemed significant.

Results: For all time points, only 2-4 symptom categories were needed to accurately diagnose PEM. During different time points, fatigue, cognitive problems, and lack of positive feelings/ mood showed up consistently although in different combinations to predict membership in the ME/CFS group. For the overall time period, binary logistic regression revealed decrease in function and a lack of positive feelings/mood as being independently and significantly predictive of group membership (p<0.001). This 2-symptom model classified 89.8% of ME/CFS subjects and 72.7% of controls correctly with a r2 value of 53.7%. Conclusion: Inquiring specifically about post-exertional decrease in function and lack of positive feelings/mood may help diagnose PEM quickly and accurately Other features distinguishing PEM are cognitive dysfunction, fatigue, sleep disturbances, and persistence of symptoms beyond 24 hours. In the future, we hope to test and validate our findings in a larger sample of subjects.

https://workwellfoundation.org/wp-c...gic-Encephalomyelitis-Chronic-Fatigue-1-1.pdf

https://workwellfoundation.org/research-latest-news/

 

And something only available as an image.



https://workwellfoundation.org/research-latest-news/