Discussion in 'Researcher Interactions' started by Andy, May 7, 2019.
I made some comments to Karl. I think he had already come to much the same conclusions.
Very much appreciate your constructive input both on this and on so many other occasions. Thanks @Jonathan Edwards.
I have permission from Karl to share the message below. Apart from some minor editing and the addition of the links it is as he sent it to me. I'm aware that Karl keeps an eye on the forum so any questions that you ask he will probably see but I can't guarantee an answer.
I have good feelings about 2020 re funding and data.
We have really interesting results in exosomes comparing severe patients to controls with Elisa Oltra [Researchgate profile] and we plan to kick off our new factor in the blood work after Christmas now our spinning disc confocal is up and running.
The factor in the blood work going on globally is probably our best bet for a therapeutic way in and then as Ron Davis says track backwards to find out what is going on at the grass roots level to identify the fundamental issues. In my view unlikely to be the same thing going on in everybody. This is highly likely a heterogeneous disease at least at the underlying cause level. Although I could be wrong on this one.
Some remarkable results coming out of the FMT collaboration between Soft Cell [website] and The Dove Clinic [website]. I would hope by the end of 2020 they will have the numbers to publish. I am trying to persuade them to submit an abstract for the CMRC meeting in Bristol.
If we can land the Wellcome funding we will be well set for the next few years to really push on.
These look like phoney commercial set ups peddling pseudoscience. Do we really want our research to involve such outfits?
I have a similar concern. We looked at some of their published 'research' and it was useless. I think Karl Morton would do well to distance himself from a private alt. med. clinic.
The IiMER and the Quadram institute are planning an FMT study. I'd leave it to them.
I suppose if he looks in on the forum he will see the comments and if there’s anything he can say to allay concerns he will pass that on to Andy. I presume he’s actually seen how this set up works and seen their data before commenting as he seems to think they have enough to present so maybe I’m prepared to give KM benefit of the doubt for his comments at this point.
Probably best to keep an open mind on this question, at this stage.
PEM in particular seems a quite specific and unusual symptom/feature, and hence less likely to be of heterogeneous origin. It would not surprise me if it turns out that the substantial majority of patients have the same basic underlying disease process going on.
Especially since the immune component seems to be oddly specific for many of us, usually presenting as pharyngitis.
I have it today after swimming a bit too far yesterday. My throat glands are twice their normal size and feel very hard, but none of the other lymph glands appear to be affected, at least not the ones I can easily prod myself.
May be, may be not. What if, in approaching things from the different angle, they discover something that otherwise wouldn't have been looked at. How many things that, previously, were considered pseudoscience are now mainstream? I don't have the answer to that by the way, just posing the question.
In regard to FMT, it's used as a treatment for recurrent C. Difficile treatment, so why not investigate it for ME, even if it's just to eliminate it as a line of enquiry?
And with Soft Cell, this is their chief scientific officer, https://en.wikipedia.org/wiki/Gregory_Prince, who seems to have a pretty solid background.
Are they both on the fringes? Yes, but I'm trusting that with Karl involved the results will assessed rigorously, so we'll find out if they have value or not.
Unutmaz/Jackson Labs are interested in the microbiome.
I think the answer is pretty close to zilch for this sort of set up, Andy.
The rationale for C. diff is very simple. Antibiotics have destroyed normal microbes so it makes sense to put some back. For ME there is no rationale of that sort. I think people keep on thinking that immune disorders must have environmental triggers from microbes but that is not based on any good theoretical or evidential grounding. Most of the evidence is against.
I don't think it really matters who he is if involved in what looks like a potentially dodgy commercial outfit.
Given the prevalence of gut issues in those with ME and abnormal metabolism being highlighted by different researchers, I'm m keeping an open mind.
However if root cause is not determined I can only see potential temporary respite being obtained via FMT.
I believe there was someone on PR doing a capsule form of FMT. Sounded a bit messy, but it did have positive results for a n=1
I couldn't even get onto their website. It had some sort of animation of squares going in and out in the middle of the screen but nothing else came up. It also froze my browser and I had problems shutting down the site when when it had finished "loading". I find this worrying (and should prob shut everything down and run anti-virus check).
Yeah, I think their website is trying to be too fancy for its own good - it's slow to load even for my less-than-6-months-old computer.
No chance for my 7 year old laptop then!
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