International: IACFS/ME - International Association for CFS/ME, IACFSME

There is now a thread on the conference with some more information about speakers and topics:
IACFS/ME 2022 Virtual Medical and Scientific Conference July 27 - 30, 2022

 

Wanted: forum members to report on the IACFSME 2022 Virtual Medical Conference
July 27-30 2022. 9 am to 5 pm EDT (New York city time)

IACFSME have kindly offered the forum access rights to the conference, in order to share the information from the presentations more widely.

We are therefore looking for up to 4 members to prepare notes to post on the forum. We expect it would be done like a relay race, with each person taking responsibility for being online at certain times. The reporters will have access to the conference recording afterwards, but ideally the initial reports will be produced and posted fairly quickly. If someone is interested in tweeting and/or posting brief notes in real time, that might also be good.

If you are interested, please contact me or Trish and say what times you could attend the conference and what output you could provide. If we have more volunteers than can be accommodated, the committee will make the call on who will attend. Members with a track record of contributing to the discussion of research on the forum will be preferred.

Thanks to IACFSME for this opportunity.
@hope123, @Keith Geraghty

 

A disappointing abstract from Fred Friedberg, President of IACFSME:
Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction, 2022, Friedberg et al

 

A reminder on this - please get in touch if you are interested in helping to report on the presentations.

 

IACFS/ME 2022 Virtual Medical and Scientific Conference July 27 - 30, 2022
I think the conference was a useful contribution to the ME/CFS community - thanks very much to Lily Chu @hope123 and her team for what I am sure was a lot of work, and for allowing Science for ME virtual access. Click on the thread link above for links to the summaries of the talks.

A recent email from IACFS/ME advertises their Journal Club:

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IACFS/ME Virtual Journal Club
REMINDER
August 17, 2022 4 PM New York City Time
(Convert Time and Date for your location.)

Evaluating case diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): toward an empirical case definition

Conroy KE, Islam MF, Jason LA. Evaluating case diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): toward an empirical case definition. Disabil Rehabil. 2022 Mar 2:1-8. doi: 10.1080/09638288.2022.2043462. Epub ahead of print. PMID: 35236205.

Click here for full article.

Dr. Jason is the foremost epidemiologist in the field of ME/CFS and has been studying ME/CFS case definitions for more than 2 decades. His recent paper aims to evaluate the validity of 3 different case definitions (CCC, ME-ICC, and IOM) by factor analyzing a large, international sample. Join us for a lively discussion and learn how Dr. Jason's views have evolved over time.

Register for AUGUST Virtual Journal Club!

Article nominations for future journal clubs

Is there a classic or recently published article you want to see presented or discussed? Do you have a burning question(s) for a researcher about an article? Do you or your group want to share your work with or get input from other scientists and clinicians?

Consider nominating an article for our future meetings via the link below. Self-nominations are acceptable. Articles do not have to be directly about ME/CFS but should have implications for ME/CFS, related disorders (e.g., FM, MCAS, POTS), and/or the symptoms of these conditions (e.g., fatigue, unrefreshing sleep, cognitive dysfunction). We are open to basic science, clinically-oriented, and public health articles.
Nominate an article/ speaker

 

IACFS/ME 2022 Virtual Medical and Scientific Conference July 27 - 30, 2022
Lily Chu has advised that recordings of the video presentations can now be purchased - details on the main thread of the conference.

 

From an IACFS/ME email:

Next Virtual Journal Club: September, 16, 2022 1 PM New York City Time
(Convert Time and Date for your location.)


Lucinda Bateman, MD, MS

• Founder and Medical Director, The Bateman Horne Center

Salt Lake City, Utah, USA

Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Results in Sustained Symptom Improvement in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Pereira, Gerard, et al. “Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Results in Sustained Symptom Improvement in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Frontiers in Systems Neuroscience, vol. 15, 2021. Frontiers, https://www.frontiersin.org/articles/10.3389/fnsys.2021.698240.

Dr. Bateman has specialized in the care and research of ME/CFS patients for over 2 decades. This work examines whether an agonist to the receptor of the acute corticotropin-releasing factor can positively affect ME/CFS. These receptors play a role in the limbic system, which helps the body assess and respond to threats, i.e. factors which can interfere with homeostasis.

Register for September Virtual Journal Club!

​

We have a S4ME thread on this study here - well worth a read before participating in the Journal Club discussion: Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS - Pereira, Bateman et al, 2021

 

From an IACFSME email:


1) November 16, 2022 Virtual Journal Club Recording
Thank you to Martina Seifert, PhD, for presenting her team's work!

Dr. Martina Seifert and Dr. Lavinia Flaskamp discuss their work examining the effect of sera from long COVID patients, some of whom fit ME/CFS criteria, on endothelial cell functioning. Dr. Seifert's work may build a bridge between ME/CFS and long COVID.

Serum of Post-COVID-19 Syndrome Patients with or without ME/CFS Differentially Affects Endothelial Cell Function In Vitro
Flaskamp L, Roubal C, Uddin S, Sotzny F, Kedor C, Bauer S, Scheibenbogen C, Seifert M. Serum of Post-COVID-19 Syndrome Patients with or without ME/CFS Differentially Affects Endothelial Cell Function In Vitro. Cells. 2022; 11(15):2376. https://doi.org/10.3390/cells11152376

Click here for full article.
Click here for video recording.
November 16th Presentation by Dr. Martina Seifert
Intro: 1:53
Presentation: 3:55
Discussion: 35:25
Wrap Up: 59:02



2) Next Virtual Journal Club: December 16th , 2022 4 PM New York City Time (Convert Time and Date for your location.)
Elisha Josev, PhD
Professor, Murdoch Children's Research Institute
Royal Children's Hospital
Parkville, Australia

Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study
Josev EK, Cole RC, Scheinberg A, Rowe K, Lubitz L, Knight SJ. Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study. J Clin Med. 2021 Aug 16;10(16):3603. doi: 10.3390/jcm10163603. PMID: 34441898; PMCID: PMC8396969.

Click here for full article.

Many people affected by ME/CFS first become sick during their teenage years. In fact, the two age peaks of ME/CFS onset are from 10-19 and 30-39. Affected children are thought to recover at higher rates than adults. Yet, there is very little research on pediatric ME/CFS. Dr. Elisha Josev will be discussing her longitudinal study tracking symptoms and quality of life in children affected by ME/CFS.

Register for December Virtual Journal Club!

 

Can someone tell me what 'behavioral aspects of ME' might be that will be worthy of a research presentation. I mean, we already know about pacing, so what's new?

 

Risk factors for suicidal ideation in a chronic illness 2022 Elliott and Jason
This paper was discussed in the 2023 January IACFS/ME Journal Club, click through for the You tube link.

 

I very much hope that a substantial number of S4ME members will be able to attend this meeting. Presumably there will be some more information in a later email about how to join the call. It's a great that the meeting will be open to the public.

IACFS/ME has the potential to be an enormous force for good; the latest conference was an example of that. But there have been some concerning missteps including giving undue prominence to scam treatments and poor quality research, including even work by Crawley. The organisation has not yet shifted to a firm evidence-based foundation. It's time for some new leadership.

For a start, IACFS/ME needs to change its name. We all know that the use of CFS/ME is a sure sign of BPS leanings, which surely is not an image the organisation wishes to project.

Next, it needs to review its membership. Here is its current approach:

Patients are lumped in with students if they need to join at the reduced membership fee; they don't get a voice in the organisation. Proper, voting members are the professionals - and that can be any researcher, clinician or health professional interested in ME/CFS and professionals working on legal issues related to ME/CFS. People with ME/CFS only get to be a voting member if they are involved in a non-governmental organisation (or fit into one of those other criteria) and can afford the substantial membership fee. It certainly doesn't send a message that the voice of the patient who lives with the disease every day is important, and is as valued as the voice of "professionals", who, as we know, often have very limited knowledge relevant to ME/CFS. The professionals, taken as a whole, have not got us very far yet.

In setting the membership fee at USD125 per year, the IACFSME reduces access to membership from people who are not wealthy. So, it is likely that the fee systematically reduces the participation of people with ME/CFS, of women, of people who aren't white, of people from countries outside North America and Western Europe. This is hardly a responsible approach for an organisation that has "International" in its name.

Any member of S4ME is involved in a non-governmental organisation and so should be eligible for membership. I think if there were more of us who value scientific rigour and patient voices participating in the governance of the organisation, then the IACFSME could be a much more effective force for good. I think if nothing changes, the IACFSME will continue to stumble along, mostly achieving very little and, at times, making things worse.

 

A reminder for this meeting.