Dr Karl Morten - UK researcher based at Oxford University

Email sent inviting him to take a look at this thread and the forums.

 

He's replied, saying that he's still in NZ and will look at this on his return to the UK.

 

Dr Morten currently doesn't have the time to engage fully on the forum but he has kindly given me permission to reproduce the following.

Dear Andy

I have had a look at the comments and questions on the site. Most of which we are asking as well and plan to address in our new project. The MRC application is crucial for our ME/CFS research. Due to be submitted Jan 16th, it will be a busy time when we get back to the UK.

Our funding from the MEA only runs until the end of Jan 2019. I hope to obtain interim funding to keep my team together until we find out about the grant July 2019.

The Welcome trust and crowd funding are other options. The £1.6Million will give us an excellent base from which to develop and expand our research in Oxford and with collaborators throughout the world. I feel it is a strong application for the UK which has been developing over the last 2 years. Getting the Oxford clinical sections together have been the difficult parts and in my view is the major challenge we face in ME/CFS research in the UK probably more so than the funding. Without well diagnosed patients we will get no where fast. NHS support in this area does not give the clinicians involved time to do research and we need to bring in new Clinician Scientists to drive this forwards. I touched on this in my talk. Problems with the PACE trial should not be ignored but we need to draw a line under everything at some point to attract people into the field. We have an excellent Psychiatrist Beata Godlewska running a 7T imaging study in Oxford on the Brains of ME/CFS patients. The data is very much around the biology of the brain with plans to run follow up metabolomics on Plasma in Jan 2019. Beata is Polish which is is probably telling us something.

The NIH study will yield some interesting results when it is completed as they have really dug deep into the disease and the causes of the symptoms.

I probably wont have the time to engage with S4Me in the short term as will be too pre-occupied with grants and papers. If we get proper funding to work in the area I will be definitely look to be more involved. We have good local connections with the local OMEGA group who I regularly give up dates to.

Best wishes
Karl​

 

Thanks, @Andy, and many thanks to Karl Morten for replying on Boxing Day when he's travelling! What a star.

I hope he gets that MRC funding!

 

All comes back to the question, what evidence is there that many of these GET patients are actually increasing their activity levels? A change in questionnaire answering behaviour is not the same as an increase in activity or activity intensity.

 

In short I agree with you strategist - I've just used more words!

Morten highlights Fluge and Mella's 2016 publication which as he (Morten) says demonstrates a blockage in the pyruvate dehydrogenase bridge (PDH). He states that the gene expression of PDH is about half of what you would expect; the effect is that glucose (normal cellular fuel) cannot be utilised to make energy (ATP). He then demonstrates the effect of ME plasma on cultured muscle cells (increased oxygen consumption - cellular energy production "problem") compared to control (plasma from healthy people).

He does deal with psychological approach by saying something about improvement; however, I didn't personally feel he was saying something objectionable. I assume that CBT is appropriately used, e.g. in the case of a biological illness, where it is not presented as a cure but as a means of dealing (psychologically) with the consequences.

He touches fascinatingly on the role of mitochondria in immunity, and the change in shape of mitochondria (he was speaking before Prusty's NIH presentation last month), in response to a question. Also, note that he is one of the authors of a paper on phenylalanine as a potential diagnostic test. It's a test which (from memory) can be scaled up; plus we can now compare the results to the change in shape of the mitochondria.

To me this guy is a well intention-ed eminent scientist who wants to do something to benefit people rather than academia. I.e. put his knowledge to better use. I'm a relative lay person; this guy strikes me as the real deal - I'm glad he's working on this.

ME Action are lobbying for the validation/development of a diagnostic test for ME https://www.meaction.net/…/announcing-millionsmissing-2019…/

@obeat

 

What does the difference in results after 24 hrs mean. If there is a clear difference to healthy controls after 24 hours would even that not imply something awry?

 

Can anyone explain why this cannot be developed ointo a diagnostic test i.e. "He did a plasma swap experiment with healthy muscle cells and showed oxygen consumption is different when mixed with patient plasma vs healthy plasma"?

@Andy
@JaimeS

 

I believe that Karl will have something to say on this subject in our Q&A with him, but feel free to post this or any other question on this thread, https://www.s4me.info/threads/question-collection-thread-for-s4me-q-a-with-dr-karl-morten-university-of-oxford-sept-2019.10827/

 

Merged thread

Karl Morten's crowdfunding campaign, "Understanding the causes of ME/CFS"

Donate via link at https://www.development.ox.ac.uk/mecfs

From https://www.wrh.ox.ac.uk/team/karl-morten

Edit reason: formatting and minor text.

 

Karl is aware that people, and in particular our members, will be interested in more detail about the project, so more comprehensive details will be released soon(-ish). We are likely to have the chance of another Q&A with him as well.

 

With all due respect to all teams that feel the need to go down this route, this crowdfunding is really getting out of hand.

 

Out of hand how? If you don't support the work, don't donate.

 

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.

Our community has limited resources. I just don't feel this is a sustainable way of doing business.

We have a duty to explore and understand why these projects aren't / can't get funded through grants. I know it's hard - I worked in academia - but it's worth understanding.

 

I'm just angry that we are forced to crowdsource basic research. This is not directed towards anyone who has started these campaigns.

Where is the UK charity involvement in this campaign?

 

KM seemingly pointed out at the CMRC that both applications they’d made were refused. I know they made a big one to the MRC which was turned down. Did they try again? . I agree with your point and although I’ve actually asked my pareNts (who hav gift aid as tax payers ) to donate for me to this As it looks really good, I have a limited amount and it’s just taking away what I’d be giving elsewhere where we are being asked to fund everything too

on the website KM essentially blames funding and That’s what frustrates me about MRC CFS position. Immensely. We are crying out for research, they talk endlessly about need to encourage it and then they turn down the good stuff available to fund....

however in the U.K. charities are falling way short of the £10 m / year we could reasonably raise if we didn’t have a multitude of factors seemingly Preventing that which means whilst the involved feel burdened, tens of thousands with the illness and their families aren’t donating anything. MS society is raising 27m / year. ME charities around £2m. I’d like a discussion as to why this vast difference because it’s a crucial deficit in the system which means state funders can’t rely on charities to get the seed stufff done and we clearly aren’t able to rely on state funders to step in to fill in the gap ( I would argue they should) . The loosers In that is the long suffering patient.

 

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.

 

Yes, the pot is self-limiting. It must be divided up - with winners and losers.

One issue with our illness compared with M.S is the rate of patients who are in work and earning a salary that can allow them to donate.

 

as posted on the CMRC thread

RE: point three on this slide

see

https://www.s4me.info/threads/the-i...-2019-zalewski-et-al.12896/page-2#post-226470

and this is the team in Poland for the new research proposal.