Dr Karl Morten - UK researcher based at Oxford University

Perhaps the project is over-ambitious and too diverse. I would think there would be more chance of getting funding, both from funding bodies and from crowdfunding, for single centre, single hypothesis pieces of high quality research by individual researchers/research teams.

Why, for example, try to include funding an FMT study run by a small private clinic, when there is the big study about to start at Quadram in Norwich funded by IiMER, and another in Norway?

And the Polish group seem to use Fukuda for diagnosis, which will likely mess up any results.

I hate being so negative. I would gladly donate to Karl Morton's research if I could see details of exactly what he is planning to do, but I don't want my money to go to a centre that uses Fukuda, or another FMT trial.
 
InitialConditions said:
This is precisely the thing I am getting at with my comments. I am pretty well-versed in M.E. science and potential leads...but I've never heard of L-form bacteria.

It would be good if we could put some questions to Karl.
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Like a lot of people I Googled "L-form bacteria" when I first came across the idea (linked to ME). Also, bear in mind that Ron Davis has made comments regarding pathogens and wanting to look at bacteria --- but they are difficult since they could be present owing to sample contamination (from the skin).

Bacterial have recently been shown to cause some forms of Alzheimer's disease; interestingly a GWAS study identified a genetic susceptibility and eventually they figured out a bacteria was the pathogen exploiting that vulnerability.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0228206
 
On the question of funding: is there an organisation comparable to the AHRC that funds doctoral research?

The arts has used AHRC funding to do some important work. For instance, I was involved in a five-year project where a teacher and director used her PhD programme to develop a framework for making theatre with young people with profound and multiple learning disabilities. It changed the field nationwide, and continues to do so. Another colleague is currently exploring the verbatim theatre model she has been working on – in her case to tell the real stories of refugees, but it has much wider potential. The research funding is patched together with money from other sources, e.g. university departments, theatres, and in-kind support, meaning a lot can be achieved on modest grants.

I've no idea how the biomedical sciences are funded or even what questions might be appropriate for doctoral research, but as we have to make the most of every possibility, I thought I'd ask!
 
I think it would be better if he avoided branching out to other topics like L-form bacteria and stuck to metabolism. In part because this idea of L-form bacteria isn't new and nothing much seems to have come out of it.

If he could identify the blood actors that are altering cell function then that would already be a great achievement, even if it doesn't directly help patients. He also thinks that he's found unknown metabolites that strongly correlate with the illness and that seems worth looking into further.

Sorry to be so blunt but I think his Polish collaborators are seriously underestimating the difficulty of the problem and fooling themselves by conducting weakly or non controlled studies that show some probably only illusory benefit due to the flawed design. I hope I'm not misremembering but their patient characteristics are also atypical as they have more men than women which could suggest problems with patient selection.
 
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InitialConditions said:
We are being asked to donate left right and centre - and that's before taking into account traditional donations to the charities or support groups.
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Fundraising for ME/CFS is pretty low compared to a lot of other illnesses. It's not ideal that lots of newly ill patients get encouraged to put all of their time and money into treatments unlikely to do any good.

I have to admit that I have no idea which of these appeals are worth supporting though.
 
I have reservations about the polish involvement/ size etc. Maybe more information will be given. I have not watched his CMRC video yet. However I’m sure he dislikes crowd funding too and really it’s fortunate for us he’s trying to continue staying in the field.
 
Cinders66 said:
I have reservations about the polish involvement/ size etc. Maybe more information will be given. I have not watched his CMRC video yet. However I’m sure he dislikes crowd funding too and really it’s fortunate for us he’s trying to continue staying in the field.
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I haven’t looked into this in any detail but with Julia Newton saying she is no longer doing ME research “because funding is so difficult to secure” (from the last APPG meeting), the lack of biomedical researchers in the U.K. is worrying and it seems important to hold on to those interested if possible and feasible.
 
What happens to the donations if it doesn’t take off? Anyone know if he’s going to get support anywhere for this, as a million plus fundraiser without it, will struggle I think.
 
Karl has given me the OK to share this here - I believe that it will be shown on his official Oxford webpages eventually but the current situation probably means the staff who would normally do this are too busy to action it.

The attached PDF gives further detail, the quote below just gives the project summary.
Project summary

Although fatigue is a major debilitating symptom in many conditions, we still have no clear insight into its biological basis. This proposal focuses on building the resources to carry out fatigue research in three clinical areas: ME/CFS, lymphoma and stroke. Most fatigue research has been carried out in ME/CFS and this will be our primary focus with the other conditions giving insight into common mechanisms associated with fatigue. Having non-ME/CFS fatigue groups will allow us to focus in on the impact of post exertional malaise on our biomarkers . Using this approach we will be able to identify ME/CFS specific mechanisms which would not be possible if just a healthy control population is used. Our recent metabolomics analysis of two ME/CFS cohorts has emphasised the importance of this approach and the benefit of using a Multiple Sclerosis group as a positive fatigue control. Here we will expand further into two other conditions where fatigue is a major problem for patients.

Our clinical research will involve three European centres and build on existing infrastructure. Pilot treatment interventions will be undertaken in all fatigue groups with blood samples taken for future biomarker discovery projects. Fatigue and movement phone app systems will be established to monitor patients and identify changes in symptoms. We will also study immune dysfunction in ME/CFS in collaboration with pharmaceutical companies. Immune cell function using whole transcriptomic analysis will be carried out on ME/CFS patients with direct in vitro challenges to immune cell function. Importantly SoftCell Biologicals will provide an in-kind contribution to our research (equivalent to $750,000) for whole genome sequencing. This will characterise newly discovered pathogens of chronic illness patients in the blood and provide whole genome sequence data on patients. In addition, pathogenic bacteria and fungi will be cultured from blood samples. We will also carry on our research into disease associated factors in the blood, our current project supported by the ME Association is funded until October 2020. The bio-resources collected during this project will be appropriately stored and made available to future studies, encouraging new investigators and clinicians into the fatigue research area. This is vital if we are to develop ME/CFS and fatigue as a clinical research area.
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A more pictorial overview
Screenshot 2020-04-09 at 12.48.32.png

To support this project, donations can be made via https://www.development.ox.ac.uk/mecfs
 

Attachments

I was skeptical about using fatigue as a study area, but I think I understand the point of it in this project better now.

As I understand it, the point of including people with fatiguing illnesses is not to find similarlities on the assumption that there is a biological cause of 'fatigue' common to all, as I had assumed.

Rather the point it to use the other fatiguing illnessess as a better control group than healthy controls, so a study of ME patients can seek biochemical and/or microbiological differences that distinguish pwME not just from healthy people, but from other sick people - to look for factors that are unique to ME.
 
wigglethemouse said:
I'm still concerned about their partnership with the FMT clinic. How do you ensure FMT samples people get will not have COVID-19.
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There is this from a company in the US - https://www.openbiome.org/press-releases/2020/3/16/openbiome-screening-for-covid-19. The Dove Clinic, as far as I can see, doesn't use Open Biome but a company in the UK, https://tml.science/, which hasn't, at least on its website, made any statement yet about COVID-19, but perhaps they will follow the lead of Open Biome?
 
I watched his CMRC presentation but had brain lapses so more gist than details.

he is blessed with energy and seemed very enthusiastic about collaborations and various possibilities. I really would like to see him funded. The polish cohort had CPET testing so even better than uk diagnosis I think.
Are the mea going to give him funding ? But it would still only be £100-200 000 per year. He might have heard about the rituximab and OMF larger scale campaigns reaching his sort of financial targets but i’m not sure that His research would inspire a global campaign or support. I just don’t know, except perhaps with philanthropist backing, how he will raise even half of the target in 5 years without some type of well organised campaign.
 
Merged thread

MEA: Fundraising: University of Oxford – Understanding the causes of ME/CFS | 14 April 2020

https://www.meassociation.org.uk/20...rstanding-the-causes-of-me-cfs-14-april-2020/

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a condition affecting 20 million people worldwide, but it remains a puzzle to both the medical profession and patients.

Complex symptoms make it difficult to diagnose and only 5% of patients make a full recovery.

Research into the causes has been limited due to lack of funding, but the recent identification of high levels of L-form bacteria in the blood of ME/CFS patients suggests a compromised immune system could be a biological cause of the illness.

Dr Karl Morten at the University of Oxford proposes to lead a major research project to investigate this possible cause in detail. It will be the largest project of its kind in Europe, involving three ME/CFS research centres over 4-5 years…
 
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