Discussion in 'ME/CFS research news' started by Dolphin, Oct 6, 2021.
It's nearly an hour long, and it's pitched at people with a pretty low level of scientific understanding (e.g. a bit of time is spent on 'what is a gene?'), so here's a summary:
Raelan Agle and Liz Carlson are ME/CFS advocates. Liz has a website called healwithliz.com
They are speaking with Dr John Greally - he's based New York. He's a clinical geneticist.
Ian Lipkin got in touch with John Greally and asked him to be part of a consortium that is led by Ian Lipkin at Columbia. There is also someone (Oliver) who is an expert in metabolomics from UC Davis, some people from Harvard and some NIH intramural researchers.
John is looking at the expression of genes in the immune cells (in blood) of people with ME/CFS. They test before and after exercise, and are using special tubes that stimulate the blood to become active. John said that if you don't have the exercise challenge and you don't stimulate the cells to become active, you don't find any difference.
The people in the study are well characterised, having been screened by experienced clinicians. There was talk about Orthostatic intolerance, and specifically the narrowing of the systolic and diastolic numbers in blood pressure which John says has been found to be quite distinctive in ME/CFS. (I know that difference by the term 'pulse pressure'. I have tracked mine over various months, and certainly, a narrowed pulse pressure is indicative of me having more ME/CFS symptoms.)
They want to see if possible differences in the immune cells, perhaps due to differential binding of receptors in immune cells are due to genetic differences. I was not very clear if they are looking at epigenetic or genetics; presumably both. There was talk about genome sequencing of all of the participants at a cost of $60-$90/sample.
A population geneticist is part of the study, Dr Sri Raj. She will be helping to identify variation that is just due to natural population variation, rather than related to an ME/CFS pathology.
There was mention of DecodeME (28.30). John is supportive and will be watching with interest. He thinks the projects are complementary - his team will be taking a careful look at a sample of hundreds rather than thousands.
John talks about Long Covid, essentially saying Long Covid is ME/CFS, and noting that the global pandemic has made it clear that post-viral syndromes are a thing.
It was a bit frustrating that in the long talk that we didn't really get to hear much about the research. I'm not clear whether the research has started or not. Liz seems to be fundraising for the research (to get started?). Her fundraising target is US$40,000 and she has contributed $10,000 and another donor has contributed $10,000, which is great.
I have to say, I don't understand how the US government can be saying there's $1.5 $1.15 billion for Long Covid research, and Ian Lipkin can be contacting John Greally to ask him to work in a team on some ME/CFS research, but there's still there's a need for people with ME/CFS to be trying to find money towards a target of $40,000 before the study can proceed.
Thank you @Hutan for providing this useful summary.
LC vs. ME; gross inequities, eh?!
Common sense and ethics don't seem to enter into these decisions.
Just as a sidenote: Raelan Agle is also some sort of ME/CFS life coach (which is based on her own recovery). If you take a look at her YouTube channel (https://www.youtube.com/c/RaelanAgle/videos), it is full of recovery stories (and mind-body connection etc). I remember at some point she even posted an entire video recommending the Lightning Process.
I've seen narrowed pulse pressure repeatedly. My understanding is that a reason for narrow pulse pressure is blood loss, therefore what it likely means in this context is low blood volume.
Also heart failure more generally but absolutely, we may have an element of impaired diastolic filling from physiologically equivalent low blood volume (too much relative intravascular space??). The non-relevant to us but otherwise more usual causes of narrowed pulse pressure are aortic valve stenosis and cardiac tamponade.
From StatPearls: physiology: pulse pressure
Because human nature is the same everywhere, when there is too much discretion in what research can be funded, the process eventually becomes mostly corrupt as friends fund other friends, so it has to be convoluted to the point of essentially being abstracted from reality. This makes it impossible to follow promising leads because the convoluted bureaucratic process only wants to fund safe projects with experienced researchers, essentially shutting the door to fund new research. That's for universities, but there isn't a single tenured professor or department dedicated to ME so the groundbreaking work is also shut out.
Research funding, at least in medicine, mostly works like the free market's "invisible hand", in that no one does anything on purpose, you just hope that out of that convoluted randomness someone stumbles onto something, eventually, maybe. That's the line we heard many times, that a breakthrough in ME may come from other fields, which of course only ever happens when different research projects happen to align and the teams find each other. For that to work still needs ME research to be solidly funded enough to build institutional memory and connections.
The whole system is built on randomness because without randomness we get corruption. The sweet spot is obviously in the middle but that breaks entirely when you add overt discrimination. The incentives are bad and this is why we can't have nice things like quality of life and a life worth living.
This would seem to be the fundraiser for the project.
Patients with ME/CFS have an inability to recover after exercise and other forms of stress. It’s a condition that builds over time and can lower energy levels to extreme lows. With symptoms of overwhelming fatigue, pain, dizziness, and more, ME/CFS is difficult to diagnose, treat, and understand. Our plan is to use samples from patients enrolled in the NIH-funded Center for Solutions for ME/CFS, to perform genomic sequencing on hundreds of genomes in a pilot phase. We will then analyze the genomic sequence to find the genes likely to contribute to ME/CFS patients. Finally, we will publish the findings to lead the conversation on ME/CFS genetics and attract larger-scale federal funding.
What a strange framing of ME/CFS. Sort of accurate but so open to various interpretations. Dr John Greally seemed to talk about ME/CFS carefully and accurately, so this is particularly odd.
The kernl site doesn't make things clearer. There's talk of hundreds of genomes in some places and thousands in others, and it looks as though the funding is just for genetic sequencing. John Greally seemed to suggest that the $60-$90 covered the genome sequencing but that there would be other costs for getting the blood into the tube, and for doing the analysis. On kernl, the project sounds more like just a straight genome sequencing project - like DecodeME but probably at a scale that isn't really helpful until there is some idea of what to look for. There is no mention of epigenetics or samples being taken post-exercise challenges on kernel.
And it is still difficult to understand why this work needs to be funded by people with ME/CFS when its using samples from people enrolled in an NIH study.
I'm not questioning the good intentions of all involved, but if people with ME/CFS are to be asked for funds, I think things need to be a lot clearer. It shoudn't take more than a couple of hours to get a good understanding of what the funds will be used for.
I remember that Lipkin himself said the grant wasn’t that big for a research center and what they might want to do. He even got a grant off Solve ME a couple of years ago to help with a particular aspect of the work. I don’t feel the need of extra money to do something extra that surprising.
Clever way to start promoting yourself without promoting yourself. Start interviewing researchers and charity trustees that have recovered and get traffic on your website which you paid for, whilst advertising your book and your “coaching services” which you have no qualifications for because you are not medically qualified.
Are we really being this stupid?
Yeah - dodgy. Stop promoting them and talking about them, and they may go away. We have already had action for me and the me association promote them which has caused traffic to go to their website, so free referrals for unsuspecting patients.
Leave the interviewing to people with no financial interests. This is not cool.
I had a look at Liz Carlson's website full of quackery and nonsense when she interviewed @phil_in_bristol. Now she's found another opportunity for self-promotion. Do we need any more ME personalities peddling quackery? I'm sick of them.
Thanks for the mention well, on my interview, as those who've watched it will see, there's no promotion of any quackery whatsoever - I ensured this would be the case before I did it, and Liz was true to her word. This latest one focuses on the work of Dr. John Greally, who I understand is a well-respected epigenetics researcher in Ian Lipkin's group, & Liz & the other woman are helping fund his studies. This seems less like quackery, & more like a good thing / move in the right direction IMO, especially as he apparently is hoping to look into "changes in genetic expression of pwME *after* exertion" - that certainly caught my eye.
(though of course studies such as this should receive decent public funding anyway - the lack of funding for biomedical studies into ME/cfs remains a huge scandal when compared to other chronic illnesses, as we know all too well.....)
@phil_in_bristol my comment was not about you or Dr. John Greally, but about Liz Carlson's website. If someone attaches themselves to anything and everything they can by taking advantage of every opportunity for self-publicity to promote their mission, they will end up attaching themselves to a few worthy causes as well. The fact that she keeps her word and is fundraising for a good cause is super, but it doesn't negate the horrendous mission of her website, which is to attract ME sufferers with promises of "healing" them with diet, mindset, words of wisdom, lifestyle, recovery stories and helpful tests. Those are the section headings of her website.
Her interviews with you and Dr Greally are her two most recent posts amongst many, others being about people reclaiming their life, finding freedom, and biohacking their way out of CFS. So by being interviewed by her you and Dr Greally have provided material which is being used to publicise and legitimise her website. She also promotes 10 "recovery coaches" who all make nonsense claims in the language of quackery. Brain gardening anyone? And of course the usual Reiki, NLP, and even this:
At best it is a site full of ridiculous drivel, at worst potentially harmful. I don't know whether her motive is financial or just to have a high profile, but if she really wants to help PWME the best thing she could do would be to shut her website down.
We are having a similar discussion about Professor Findley at the moment, with CS on social media saying "yes but ..." and pointing out Findley's virtues as if that somehow negates all the harm he's done. So Liz Carlson keeps her word and raises money for a good cause. After seeing her website, I don't really care, sorry.
Yesterday I mentioned Raelan Agle in another post of mine and I also went and checked her channel and this is what I found, a video uploaded 5 days ago:
I haven't watched it yet but Greally seems to associate himself with these ME/CFS coaches a bit too often for my taste. I don't know why he validates them with his participation, I personally find it very problematic.
If you check Agle's latest videos, it consists almost entirely of stories about full recoveries and interviews with other similar recovery coaches like Dan Neuffer or Alex Howard. Greally provides a great opportunity for people like Agle to look like they are actually advocates who care about the science and just want the best for patients.
Self promotion always wins out with this disease. Its not and never is about patients sadly.
I have watched the video now - what Dr Greally appears to be doing is like a mini-DecodeME (GWAS, sequencing, DNA, predictors of ME/cfs disease, etc), and he thinks they may get results in the next few months! Certainly interesting and could lead to better funded studies (as he mentions), & maybe an improvement in diagnostic possibilities. As someone who was involved closely in DecodeME, I will be keeping an eye on this.... I recommend watching the short video.
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