August 21, 2020 IACFS/ME Virtual Conference

NelliePledge said:
Not transparent. Some effort to communicate highlights with the wider ME community should be a basic output.
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According to @hope123 post earlier in this thread that is the plan
hope123 said:
Finally, we always have a few writers from the ME/CFS community reporting on the meeting. They cover highlights and occasionally interview speakers. Most of these summaries are made available freely after the meeting.
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I attended. I missed the first block due to sleeping in (it was after all only 7 AM on the west coast). There were no major revelations, and because i missed the beginning i am not sure what is embargoed-

Due to brain fog i will need to watch again to make sure i didn’t misunderstand any information or got the numbers wrong.

The conference webcast was good, and i must admit very convenient for those of us sick- we could ask questions in a chat box but not discuss between each other- most questions were answered if they were relevant.
 
Small-Fiber Polyneuropathy May Underlie Dysautonomia in ME/CFS
Article by Miriam Tucker on Ryan Whelan's presentation at the conference

A significant proportion of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia may have potentially treatable underlying autoimmune-associated small-fiber polyneuropathy (aaSFPN), pilot data suggest.

The findings, from a single-site study of 61 patients with ME/CFS, were presented August 21 at the virtual meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis by Ryan Whelan, BS, a research assistant at Simmaron Research Institute, Incline Village, Nevada.

Recent evidence suggests an autoimmune etiology for some patients with ME/CFS, which is defined as experiencing for a period of at least 6 months profound, unexplained fatigue, postexertional malaise, and unrefreshing sleep, as well as cognitive dysfunction and/or orthostatic intolerance (OI).

OI is part of a spectrum of autonomic dysfunction commonly seen in ME/CFS patients, which may also include postural orthostatic tachycardia (POTS), peripheral temperature dysregulation and light sensitivity, neuropathic pain, and gastrointestinal complaints. Many of these symptoms overlap those reported by patients with aaSFPN, a common but underdiagnosed neurodegenerative disorder characterized by the loss of peripheral autonomic nerve fibers, Whelan explained.


Findings from the current study show that in more than half of ME/CFS patients, levels of at least one autoantibody were elevated. A majority had comorbid POTS or OI, and over a third had biopsy-confirmed aaSFPN.

"Given the overlap of symptoms and common etiological basis, it may be important to identify ME/CFS patients who present with comorbid aaSFPN, as it has been shown that immune modulatory agents, including intravenous gamma globulin [IVIG], reduce the autonomic symptom burden in aaSFPN patients," Whelan said.

He noted that Anne Louise Oaklander, MD, a neurologist at Massachusetts General Hospital, Harvard Medical School, Boston, and colleagues previously linked aaSFPN with fibromyalgia. In addition, they've found a connection between small-fiber dysfunction and postexertional malaise, which is a hallmark ME/CFS symptom.

Asked to comment on Whelan's presentation, IACFSME co-president Lily Chu, MD, told Medscape Medical News that the new findings are "valuable, because ME/CFS has always been looked upon as just subjective symptoms. When people have laboratory abnormalities, it can be due to a bunch of other causes, but...here's pathology, here's a biopsy of actual damage. It's not just a transient finding. You can actually see it.... It's a solid concrete piece of evidence vs something that can fluctuate."

Autoantibodies, Autonomic Dysfunction, and Small-Fiber Polyneuropathy
Whelan and colleagues conducted an extensive analysis of medical records of 364 patients with ME/CFS (72% female) to identify potential aaSFPN comorbidity. Such identifications were made on the basis of progress notes documenting autonomic dysfunction, laboratory results for serum autoantibodies, and questionnaire symptom self-reports.

They identified 61 patients as possibly having comorbid aaSFPN. Of those, 52% tested positive for at least 1 of 4 autoantibodies, including antimuscarinic cholinergic receptor 4 (47%), anti-beta-2 adrenergic (27%), antimuscarinic cholinergic 3 (25%), and anti-beta-1 adrenergic (13%). These autoantibodies were linked to ME/CFS in a recent Swedish cohort study.
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https://www.medscape.com/viewarticle/936745
 
I assume they are charging in order to cover costs of admin to organise the conference, record the lectures, and get them checked by the speakers and edit etc. The conferences we normally watch online free probably cover their costs from attendance fees.
 
Trish said:
The conferences we normally watch online free probably cover their costs from attendance fees.
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'attendees' had to pay to register in the first place; I'm guessing that maybe there were'nt enough. Maybe if the registration fees hadn't been so high there might have been more.

eta: looks like I was wrong
"The half-day (Zoom) conference was held on 21 August 2020 and attracted 274 attendees from around the world"
(from Toms post below)
so access to the recordings could be made more affordable.
 
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As in our prior meetings, IACFS/ME invited several members of the media like Miriam Tucker and writers like Cort Johnson to cover the meeting. Thus, if you are not able to watch the video, you can read their reports in the following weeks ahead. We may also compile the reports together and place it on the IACFS/ME website or send it out to our e-mail list members. This is our way of making the meeting available to people who cannot afford to attend.

Meetings take time, effort, and resources to organize. Yes, even virtual conferences. In fact, virtual conferences have challenges of their own and are not easier to organize than in-person meetings. We also vet all work submitted for scientific quality, conflict of interest, and qualification for medical education credits, something other ME/CFS meetings do not do. That process takes months and funding.

We have tried to make the meetings as affordable as possible. In fact, it would be even more expensive if it were not for our sponsors and the hundreds of hours people volunteered to make the meeting happen. If anyone would like to volunteer or help us raise funds for the next meeting, that can allow us to decrease the price of attendence. Visit the IACFS/ME website and complete the Contact Us form.

Conferences are a major source of financial support for IACFS/ME. IACFS/ME is almost entirely run by volunteer scientists, physicians and professionals so we do not have the time/ energy to fundraise in the same way as other groups. (Some non-profits have paid staff whose only job is to raise funds.) Without adequate funds, the organization will not survive and be unable to organize future conferences.
 
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