Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

So, for those of you who aren't aware, I have been fortunate enough to be invited along to take part in these meetings as a patient representative. A brief overview of Dr Morten can be found here, https://www.wrh.ox.ac.uk/team/karl-morten, and his MEpedia page is https://www.me-pedia.org/wiki/Karl_Morten (which at time of posting needs updating).

To manage expectations - there will be a lot said in the meetings that I won't be able to report. The vast majority of the conversation will be from unpublished work which typically is kept under wraps until it appears in a journal. However, I’ll do my best to be informative without breaking any confidence.

I will report back from each meeting I'm able to attend, starting below.


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Meeting 1st May 2019


Following a welcome to all, first on the agenda was myself, giving an overview of the forum and explaining what we hope to achieve, particularly emphasising our desire to connect and interact with researchers. I’d like to think that this was well-received, at the very least nobody seemed to fall asleep during it!


A presentation on L-form bacteria from Brent Hunt, founder and CEO, of Soft Cell Bio, http://www.softcellbio.com/, followed.
L-form bacteria are strains of bacteria that lack a cell wall, https://en.wikipedia.org/wiki/L-form_bacteria. They do not show up on standard tests and while we all have them, as we age, and in people with compromised immune systems, they can be found in much greater numbers.


Next up was the work of Dr Morten’s team on the “something in the blood” hypothesis. This has already been covered both by Dr Morten himself, in this video here,

Code:

https://youtu.be/Yb3wbQt1BCc?t=1879

[copy and paste the above link to skip to the correct point in the video]

and by the blogger Simon McGrath (@Simon M ) here, https://mecfsresearchreview.me/2019/04/25/something-in-the-blood/.

One additional piece of information is that they have heated patients plasma used and then repeated the test - this then did not show the same effect as previously, which leads to the conclusion that it is definitely a biological agent at work.


Following on, the NHS treatment experience was explained by an NHS physical therapist. I think this was useful to give those at the meeting an idea of what actually happens in the “CFS” clinics in the UK.


Next, Tiffany Lodge, https://www.wrh.ox.ac.uk/team/tiffany-lodge, presenting on her metabolomic work on patient samples.

She's part of Karl's team at Oxford and is analysing samples from the UK ME/CFS Biobank. They are doing metabolomic analysis on these samples and was reporting on what she had found so far with amino acids - one thing that was obvious from her presentation is that she is having to work with a lot of data that has been generated.

Further reading:
https://cureme.lshtm.ac.uk/biobank-samples-received-dr-karl-morten/
https://www.meassociation.org.uk/20...-the-oxford-research-centre-13th-august-2018/


After that, Jamie Strong, https://www.wrh.ox.ac.uk/team/jamie-strong.

Jamie, again, is part of Karl's team at Oxford. He talked about the un-published study of patients whose metabolome was tested both pre- and post-GET. He has found similar results in the amino acid profiles of his patient cohort as Tiffany has found.

This work was a poster presentation at the recent MitOX meeting at Oxford, https://www.s4me.info/threads/mitox...rchers-with-an-interest-in-mitochondria.8095/


Last but one was Pawel (Cryotherapy)

Based in Poland, Pawel has been looking at cryotherapy (https://en.wikipedia.org/wiki/Cryotherapy#Whole_body_cryotherapy).

He has tried it with a sample of CFS patients with follow-up to 12 months, and the, unpublished, results look promising. His speculation is that it brings about changes to the autonomic nervous system.

Cryotherapy is, apparently, relatively popular with the general population in Poland so finding facilities there is less of an issue than it would be in the UK, where it tends to be limited to facilities that work with top-level sports.


And finally, Lladislav (Technologies to apply to ME/CFS)

I was flagging at this point so I didn't follow much in this presentation. Basically Lladislav, who I think was based at Oxford, is using a certain type of non-invasive scanning (the name of which I forgot to note down) to look at the energy used by certain organs in the body, in particular the liver. I'm not sure there was any notable results so far but this was received well by those at the meeting and there was a willingness to explore this as an avenue to add more data to what we know.

[Via Karl, I was able to clarify later that Lladislav is from the Oxford Centre for Clinical Magnetic Resonance Research and that he was reporting on MRI (Magnetic Resonance Imaging, https://en.wikipedia.org/wiki/Magnetic_resonance_imaging). Also willing to work with the group are researchers at the Wellcome Centre for Integrative Neuroimaging, https://www.ndcn.ox.ac.uk/divisions/fmrib - all that is needed is funding...]


In summary
Karl Morten has gathered together a multi-disciplinary multi-national group of smart people to investigate ME. They aren't limiting themselves to just one approach to the problem, which when there is a such a lack of basic knowledge about ME I think has to be the way to go. Whether through accident or design he has also brought together a multi-national team, with members in Poland and from Spain, which hopefully means there will be a better chance of accessing EU research funds if we in the UK still insist on leaving the EU.

And finally I didn't feel out of place there, I was treated with respect and was listened to whenever I felt a need to offer an opinion. His open attitude to engaging with and learning from patients is like a breath of fresh air, compared to what most patients will have typically experienced in the UK. I’m very much looking forward to what might come from this collaboration.

Final fun fact. I got to stay just around the corner from the Headington Shark, https://en.wikipedia.org/wiki/The_Headington_Shark

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Awesome report. Very exciting! Thank you!

 

Nice shark.

Out of curiosity, do you know why they repeated the experiment with heated plasma? Was it important to prove that it's a biological agent?

 

The impression I got was that it was just a case of eliminating possibilities, rather than they had a suspicion that it would be a non-biological agent.

 

Very interesting, @Andy - thanks for reporting back.

 

Can you reveal how hot?

 

55c I think.

 

Interesting. Did they say what temperature they heated the plasama to? I wonder if Hyperthermia Treatment (commonly used for Lyme and mostly in Europe) would be helpful for patients. (Unlikely, I think, as it would likely trigger a crash.)

Do you have Pawel's full name? Or links to any of his research?

 

Answered above, but again, 55c.

https://www.researchgate.net/profile/Pawel_Zalewski

 

Any word on his MRC grant application @Andy? If he is has put this collaborative together he must be betting on funding coming.

 

No, no word yet - it's anticipated that the decision will be announced within the next couple of months. As to the collaborative, I suspect that in order to be able to put a substantial funding application in, there needed to be a group of researchers committed to working together who could then make use of the money so, in the nicest sense, Karl is able to keep it together with the possibility of the MRC funding - if they don't get funded then, obviously, it's possible, if not likely, that they will individually move on to projects that are funded, which could potentially still be ME/CFS work but it won't have the scale that the MRC can offer.

 

I'll be keeping my fingers crossed. From what I've read he seems very willing to collaborate which is a big big plus. And to have another mito expert long term involved in ME/CFS would be a big big plus. I also believe having folks like you, and Jamie in the lab, engaged with these researchers is key for motivating them too.

 

Thanks Andy. Excellent report.

Really happy with Morton's group in the UK. Look forward to their publications.

 

Sadly I have to report that Karl has advised me that the MRC have turned his application for funding down. Karl had hoped to be able to respond to the reviewers comments but wasn't given the opportunity.

He and his team are currently exploring other funding avenues with, apparently, "some interesting possibilities" but he says that "we will likely need to focus more on smaller projects in the short term.".

 

Ugh that sucks!!!! Such a pity!!

 

Thanks for informing us Andy. This is really frustrating news, though.

 

I guess "priority" is another one of those words that can have entirely different meanings.

What actual research in ME has the MRC funded for this "high priority area"? Did it even fund any at all?

 

It had ring-fenced money set aside in 2011 and £1.6 million was given out to 5 studies. But that is basically the only biomedical research it has ever funded (two other studies I suppose are/were borderline but like virtually all the other studies (apart from 2011), they were led by biopsychosocialists/CBT school).

 

I heard independently about the MRC turning down Morton at the end of May but my source didn’t give permission to share.

 

This is total mince . ( Scottish term akin to being utter rubbish)

ETA the funding being turned down, not the research.

I think this just evidences @Jonathan Edwards comments re MRC.