Tom Kindlon
Senior Member (Voting Rights)
From an email I got today:
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Massachusetts ME/CFS & FM Association launching Research Club Support Group on Zoom this month
- Thread starter Tom Kindlon
- Start date
@Tom Kindlon, is this a public event or by invitation?
Tom Kindlon
Senior Member (Voting Rights)
I wasn't personally invited, if that's what you mean. I have never paid a subscription, I'm just on an email list that anyone can join. Their last message about support groups was subsequently posted publicly:
https://www.massmecfs.org/newsletters/738-2020-05-may-newsletter
You have to register in advance. If they get too many people, they could always cherry pick then. I thought it was worth highlighting, as they might not get enough interest, and it might not continue.
Tom Kindlon
Senior Member (Voting Rights)
Tom Kindlon
Senior Member (Voting Rights)
Snow Leopard
Senior Member (Voting Rights)
Has anyone participated in one of these meetings? I'm curious about the level of engagement with the audience / interesting questions being asked?
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)
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)
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Tom Kindlon
Senior Member (Voting Rights)
Tom Kindlon
Senior Member (Voting Rights)
Tom Kindlon
Senior Member (Voting Rights)
These treatments would be offered off-label by specific doctors, under the right circumstances. Here in Canada, there is a much tighter regulation against the use of off-label drugs, especially if the drug cost a lot of money, requires IV administration, and is riskier for the patients. Also, plasmapheresis is costly and requires specialized care, reserved and funded for certain applications only (example: bone marrow transplant) therefore a socialized health care system would only cover it and offer it for that specific disease or medical procedure it is indicated for.
I think that the fact that people here on this forum talk about these treatments is a magnification of what is truly happening in real life: not very much. It means that in Seattle, you only qualify for CBT, there is not very much for you either in Texas. If you can afford it in Los Angeles you may find someone what will prescribe you IVIg, and may also be able to get it covered under your specific health plan, but IVIg is not indicated for ME. There has not been any clinical trials on its benefits. Unless you have a specific immune globulin deficiency (and first you’d need to get tested for that, and in Canada, you don’t) you won’t be able to get it.
Also, and this is just an observation and personal remark, it is unfortunate that we have had so little clinical trials for ME in the last decades. While i understand that trials are expensive, and that we do not have a mechanism of disease as of yet, and that every doctors have their pet theory, on top of having an oversubscribed clinical practice, and not having the funding let alone time, proper training and human resources for conducting trial, we are still lagging way, way behind.
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