Discussion in 'General ME/CFS News' started by Andy, Mar 31, 2018.
Pretty interesting interview I thought, albeit the sound quality isn't great.
Here is a thread that shows how people can help support Llewellyn King's work on "ME/CFS Alert." https://www.s4me.info/threads/an-appeal-for-help-with-llewellyn-kings-me-cfs-alert-videos.2487/
Watched 2/3. Excellent. Is he still crowdfunding for vagus nerve research? Can this forum get behind his effort?
I like VanElzakker. His 'vagus nerve hypothesis' is certainly interesting, and would tie together a few existing studies: https://www.ncbi.nlm.nih.gov/m/pubmed/23790471/
He's following up on the Japanese PET study, albeit to take things in a slightly different direction.
Though, I suspect, as is usually the case, the picture will turn out more complicated than just this. It's a very elegant model, which is perhaps why I think it'll only be partially correct, if at all.
There's also this paper which suggests that 'sickness behaviour' alone doesn't seem to account for the symptoms of ME, which is a big part of VanElzakker's model: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751187/
Compare it to something more complex like this 'infection-elicited autoimmunity' model, which seems far more fiddly: https://www.frontiersin.org/articles/10.3389/fimmu.2018.00229/full
He makes great points about education. We certainly need more.
This might be of interest:
Interview with neuroscientist Michael VanElzakker: Vagus Nerve, ME/CFS, latent infection and more
December 7th, 2017 by Amy Proal
eta: he makes some comments about PACE
"And I have used the PACE trial as an example in the research methods class. First to show the importance of choosing reliable/realistic study outcomes. Also though, I’ve pointed out how the PACE trial team went on a press tour with claims that went well beyond their data.
I feel that the impact of PACE on patients would not have been so negative if the team had stuck to talking about what they actually found (in terms of results).
But they decided to tell the popular press that they discovered how to make people with ME/CFS recover.
Again, a claim that’s just way beyond their actual data, even setting aside critiques of how they arrived at those data. Also, in the abnormal psych class I talk about how in some cases psychosocial models for disease aren’t as strong as many people assume and that many conditions that were once thought to be psychosomatic are now understood to not be."
He makes an important observation here:
"I’ve realized I need to change my own approach.
In the past I’ve been using the standard ME/CFS intro sentence when writing about it: Something like “Chronic Fatigue Syndrome is a poorly understood, crazy complicated disorder/mystery that has everyone completely baffled.”
But over the last months I’ve realized that description is just untrue. Of course not everyone agrees on what triggers the illness, but in some cases we kinda do. Many patients (if you ask them!) can tell you how their symptoms started (I got Mono, I got sick when traveling in Colombia and never got better, etc.). It’s hardly like we’re dealing with a complete black box of information.
Also, there’s “mystery” surrounding almost every human chronic disease. For example in cancer, we don’t understand why cancer cells can’t stop replicating.
But we don’t describe cancer as a hopeless mystery. So I’m going to stop using that kind of language. I feel like it intimidates clinicians/researchers and adds to an aura of debate (“is this psychosomatic or not?”) that’s not justified. It also gives clinicians an excuse to throw up their hands up and say, “It’s just too hard to treat patients with ME/CFS.”"
So $5-6000 in 5 months of $30 000 target. Not great progress if they're still looking to do it. Are there reasons why, I saw in the linked to thread above from Andy, Simon saying about the Japanese study covering some of it anyway. I will watch the rest when brain has recovered, to see what he says.
As an aside I think Michael is a great asset to the cause, becoming involved due to a sick friend, really getting it in the writing above and speaking at unrest screenings. Didn't Montoya say similar that the mystery talk needed to end.
This is exactly what we need from a researcher. He's definitely right about the language used. If anything, it's an hysterical, catastrophising kind of monologue that says more about the people who use it than patients.
The message is: 'This illness is a baffling, horrible mystery beset my militant patients! It's too complicated to investigate properly, so don't bother! Leave it to us, though, because we alone have the answers!'
It simultaneously dissuades people from engaging in research and reaffirms the 'establishment' as the only option for patients.
His claims about his vagus nerve theory seem cautiously moderate, he doesn't believe it to be the smoking gun, he says.
I like the section where he explains very simply: When you have a cold , you may get a blister, your immune system is compromised and a herpes virus reactivates. What if the same happens elsewhere in the body? e.g. a herpes virus lodging in a nerve tissue and reactivating when something stresses the body?
When there is inflammation in the gut the vagus nerve transmits inflammation signals to the brain, he says. Imagine if a virus activates inside the vagus nerve itself, what kind of signals does the brain receive then?!
His blister example made me wonder: In my healthy years I used to have blisters a lot, not just when getting a cold, but also - after sports, too much heat under the sun, a very bad night sleep, etc. All kinds of stressors. And then I would feel a tickling sensation on my lips and just knew "Damn! Here comes a blister for sure, there is no stopping it!" And would be stuck with it for a couple of days.
This is analogous to my crashes today, I have a "Damn!" moment when I have done too much, I know a crash is coming and that I'll be stuck with it for a couple of days.
I used to have "post-exertional blisters". Now I have post-exertional malaise. Pure chance resemblance or could there be a link?
(strangely, I no longer have blisters, I wonder where the virus went...Either asleep, or it has migrated elsewhere in my body, causing far worse damages. I preferred it when it infected my lips alone..)
Do patients tend to get more herpes virus blisters compared to the normal population? I had that regularly as child. On the nose, around the mouth.
This might also be of interest; he will be in the review panel after the screening of Unrest
I've never had them. Do a poll.
I'm not sure whether I still get cold blisters - I think I do occasionally (once or twice a year perhaps?). I very rarely get anything like a cold - haven't done for many years, and if I do I think it's very mild and short-lived.
What a great article.
Also good to see Michael VanElzakker referring to @dave30th's and @JenB's advocacy endeavours. Really shows how the dots are starting to join up.
I don't know whether there is an established thread for this but with my brain fog I forget all the researchers/research studies to donate to. I wish there were a thread I could go to and see a list. It would be good to refer to when deciding who to donate to next.
Separate names with a comma.