Researcher Interactions Video: Science for ME Q&A with Prof Simon Carding, Quadram Institute, June 2019

https://www.youtube.com/watch?v=melRO1z39rI

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We were delighted that Andy from the forum was able to speak to Prof Simon Carding, of the Quadram Institute in Norwich, about his ME/CFS research work, which focuses on the gut and its microbiome.

You can read more about Prof Carding here, https://quadram.ac.uk/people/simon-carding/

And about the work that he leads at the Quadram institute here, https://quadram.ac.uk/simon-carding/

Donations to support his work can be made here via Invest in ME Research, https://www.justgiving.com/fundraising/letscresearch

 

Can anyone summarise please? I can't follow information that's presented orally.

 

Thanks Andy!

 

You're welcome

As I alluded to in the question gathering thread, the possibility of a follow up video has already been discussed with Prof Carding, if I don't hear from him beforehand, I'll be getting back in touch with him in 6 months time to discuss it further.

 

I would also love to know what he says. Really excited about the fecal transplant.

 

Thank you @Andy

Really interesting info. I haven't finished viewing yet, but it's interesting (there's that word again), that Prof Carding said IBS can precede ME.

Dr. Bruce Carruthers (lead author of the Canadian Consensus Criteria) said the same thing.

Unfortunately, IBS is treated as benign, and/or some sort of psychological/stress type problem.

Probiotics may help IBS.


Also interesting were Prof Carding's comments about gut viruses and antibiotics being very bad for the microbiome.

We have the theory that enteroviruses may trigger ME.


Although antibiotics are a very needed treatment with bacterial infections, I feel much worse after them - with symptoms effecting more systems than the bacterial infection did.

I have to take a lot of probiotics to get on some sort of balance again - albeit the usual crappy ME balance.

Concerning to hear on the video that it can take years for the microbiome to recover from antibiotics.

If a person has many rounds of antibiotics over a few decades, it seems like their microbiome could be in very bad shape.


We have seen the attitude about antibiotics and probiotics evolve over time.

At first a person may have been seen as odd to say they take probiotics during or after antibiotics.

Now pharmacists and doctors may recommend probiotics, and when to take them in regards to antibiotics.

Thanks very much again, @Andy for organizing this video interview!

 

I almost didn't watch this because the microbiome is something I'd put in the too-hard basket to be figured out in my lifetime, what with all the thousands of microbes, many unidentified, interacting with each other as well as with our own cells - much too complicated for my liking. Plus I guess I'm hoping for treatments with less of a yuck factor than FMT

But then I recalled that whenever @Andy does one of his chats there is always something of interest. So I watched - and wasn't disappointed .

In my dismissal of microbiome studies I'd failed to take into account that sometimes we can treat things without fully understanding them, so the upcoming FMT treatment trials will be interesting.

I was very impressed with the effort and resources Prof Carding is putting into his ME research, basically building his project from scratch. It's a good illustration of what people with sufficient academic standing and influence can do when they set their mind to it. On top of that he's making an excellent effort at improving medical education and links between researchers and clinicians.

A couple of questions that occurred to me while watching that you could ask at your follow up interview. I know it's a while off, just putting them here before I forget.

1
FMT works very well for C.diff but results seem to be more mixed in other conditions, notably there often seems to be an initial response but one that doesn't last. If that turned out to be the case in ME, too, would the solution be repeated, maybe for life, FMTs? Or....?

2
Searches for pathogens in the blood have so far come up with nothing much. Is it a possibility that there is a chronic infection in the gut instead? And that the gut pathogens release something that manages to get into the blood? Or our immune system does as a result of fighting the pathogens in the gut?

This question arose from some puzzling results I had from Ubiome. For reasons nobody, including Ubiome, has been able to explain there is something called 'phagosome' listed as a 'bacterial ability', which makes no sense to me because my understanding of a phagosome is that it is the result of a phagocyte engulfing either a pathogen or cellular debris. If anyone can enlighten me on the phagosome-'bacterial ability' connection I'd be very grateful.


But back to my main point. My 'phagosome' readings rose along with the severity of my ME (while my IBS decreased, maybe or maybe not helped by improved management). Readings are mine compared to All Ubiome Samples (so in y1 mine was much lower than average, but in y3 more than 15 times as high):

year 1: very mild ME, moderate IBS, phagosome 0.28x
year 2: moderate ME, mild-mod IBS, phagosome 13.26x
year 3: moderate-severe ME, mild IBS, phagosome 15.73x

So, using my results as an illustration (not asking for personal advise here), could they be the outcome of a chronic, and worsening, infection, the fighting of which results in a high phagosome and potentially in some particles that can get through the gut barrier into the blood?

Or could they be a result of excessive intestinal* autophagy (caused by what?) that maybe weakens the mucus barrier and thereby allows particles to pass into the blood? (A quick google comes up with lots of links between autophagy and one of Prof Carding's areas of interest, IBD.)

* A very quick google shows that mitochondrial autophagy in muscle may be reduced in ME but none of the top results relate to the gut.

 

Thanks, glad you enjoyed it Ravn.

I know you aren't asking me those questions but thought I'd give my thoughts on them anyway.

1. If FMTs turn out to give an initial response that doesn't last then that would, to me, logically seem to strongly suggest that the source of ongoing ME isn't in the gut - that there is something elsewhere that is then affecting the gut, the changed gut microbiome then is the next step in the chain resulting in ME symptoms. If FMTs "only" treat any GI symptoms but otherwise have no effect on patients ME symptoms then we have proof that the gut, while affected, isn't in the causal chain of ME.

2. I think that Prof Carding concedes this possibility? Or at least when I suggest that the "something in the blood" could be something from the gut, released into the bloodstream through a leaky gut barrier, he doesn't shoot the idea down straight away.

And to your phagosome readings, have you talked to a medical practitioner about them? My uneducated layman response is that it would seem to suggest some ongoing infection.

 

Depends. If a change in the microbiome is observed that correlates with improvement in symptoms, and the microbiome over time reverts back while the patient relapses back into a pre-FMT symptomatic state, I think that would suggest that the gut is very important. Assuming that there is proper blinding that would allow one to distinguish bias from genuine improvement.

My own experience is that the gut and diet are important.

 

Yes, I agree, and I don't say that the gut isn't important, just that if there is a reversion then it suggests that the gut isn't the source of ME.

 

https://www.sciencedaily.com/releases/2019/04/190409093725.htm

 

I was wishing I'd asked where they get their FM for the FMT in the clinical trials! From healthy relatives? From other people, who've been screened? Is there a future in the 'poop pills' that are being developed?

Even if there's a trial, and it's successful, these issues might affect how replicable the results are.

 

Hopefully we'll be able to ask questions like that next time.

 

I have (tried). There've been two types of response, neither very helpful (though one doctor did some sort of stool test which come up clear):

1) The panicky look: I never learned anything about that at med school. Why do I have to get all the difficult patients?

2) The dismissive look: Oh, that load of pop-pseudo-science bollocks again. Why do I have to get all the dumb patients?

I have some sympathy for the first type of reaction, very little for the second. But what's most infuriating is that Ubiome refuse to explain, at least to me, what exactly it is they're measuring, thereby making interpretation impossible.

And here's a third possible future question: Could Ubiome be used for an initial, relatively cheap, big data 'fishing expedition'? Similar to what's been done with 23andme?

 

working on it

 

Thank you Andy for this video. I'm fairly local to the quadrum too. Great work!

 

Part 1

 

part 2

 

Thank you @Sly Saint