Massachusetts ME/CFS & FM Association launching Research Club Support Group on Zoom this month

@Tom Kindlon, is this a public event or by invitation?

 

Thanks for clarifying that Tom.

 

I attended this zoom meeting today. There was a group of just over 20 people with a welcoming and relaxed atmosphere. All except me were based in the US.

The topic for this meeting was the recent IACFS/ME Conference - talking about presentations that were thought interesting. Probably, it will depend on the particular topic as to whether the discussion is too basic, too complicated or just right for someone. The impression I got was that people new to a topic would probably feel comfortable asking questions. There was general discussion and then Roshan Kumar led the discussion with some slides.

Some random notes (and apologies for generalisations):

A number of people liked Caroline Kingdon's IACFS/ME presentation about visiting people with severe ME/CFS. That might be one worth checking out by nurses working with people with severe ME/CFS.

There was a brief discussion about Daniel Missailidis' presentation (on the mitochondrial disfunction and fuel preference (glucose vs lipids) and interest from the group in hearing more about that.

Re a presentation on Low dose naltrexone - a lot of people in the zoom meeting noted that LDN hadn't helped them.

Some comment on Friedberg's presentation - which was said to have found that following a push/crash pattern didn't result in a worse condition after 6 months. That sounds like an interesting paper to check out - some in the zoom meeting thought 6 months probably wasn't long enough to assess the impact.

There were slides and considerable discussion about Whelan's presentation on 'ME/CFS and Autoimmune-associated Small Fibre Neuropathy'. It was noted that looking for individual auto-antibodies is slow and liable to miss things. Wakiro Satos' work on expansion of reactive antibodies was mentioned. There seemed to be quite a bit of support from the zoom meeting participants for the idea that ME/CFS, or at least a subset of ME/CFS, is an autoimmune disease. A difference I noted was that there's a lot more access to IVIG, plasmapheresis , rituximab and other treatments in the US, as compared to Australia or NZ. I didn't get the impression that any of the treatments had been particularly useful to people in the meeting but it's clear that there are some doctors promoting them.

There was some talk about Long Covid studies and a look at the detailed work being done on the immunology of people with different outcomes in acute Covid. The Dubbo study was mentioned - nice to see people hearing about fundamental studies like that one.

I think these calls happen on Sundays (US time) - Monday morning in NZ and Australia. It sounds as though they have interesting presenters lined up for future calls.

(some minor edits to make what I was meaning clearer and to not make an assumption about the frequency of the meetings)