Dr Karl Morten - UK researcher based at Oxford University

From Twitter.

"Urgent, please forward Our new Raman diagnostics paper is ready to submit. It has taken 12 months but now includes 98 subjects and we can assign unknown samples to disease and control groups with 90% accuracy. The study builds on our previous paper"

"Our key researcher is out of contact in 3 days time! Our plan is to apply for a 5 year fellowship too continue the work and expand into other areas including #lyme @pans #MS #pwME #LongCovid"

"The Fellowship if funded will start towards the end of 2023 and we have a 12 months funding gap. We need £5000 per month to pay the researchers salary. A £10 donation per month from 500 people would cover this. Donations can be set up on the link below. development.ox.ac.uk/mecfs"

"It is crucial we keep this work going as we look to move the approach into studying single cell immune function in live cells in vitro. Please use the Marker Validation link on the donations page."

"I feel 2023 will be a big year for many complex and currently unexplained conditions. We need to start joining up the research findings and this will require long term funding #pwME # lyme #LongCovid"

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Does anyone know why they don’t get funding from Solve or OMF? I don’t feel capable of assessing the science and understanding if worth donating to. At least with Solve and OMF I know a team has reviewed before allocating funds (even though sometimes I find decisions questionable)

This post is pretty confusing. 5000 per month for 12 months is £60,000. Is that what they must raise?
 
Braganca said:
Does anyone know why they don’t get funding from Solve or OMF? I don’t feel capable of assessing the science and understanding if worth donating to. At least with Solve and OMF I know a team has reviewed before allocating funds (even though sometimes I find decisions questionable)

This post is pretty confusing. 5000 per month for 12 months is £60,000. Is that what they must raise?
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Or ME Research UK. They would need £60,000 per annum to cover all costs
 
It seems that they want to raise £300,000 for a five year salary. To be productive that will need running costs so the realistic need is about £500,000.

I don't think that can be raised through monthly donations, and certainly it needs peer review.
 
I agree.

I'd rather donate to one of the ME charities that professionally reviews research applications when it's biomedical research like this.

It's different from donating to someone like David Tuller's post where I can understand what he is doing and assess the value for myself.
 
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.

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.
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2.5 years on and my views haven't changed.
 
Binkie4 said:
Do we know which is the accurate figure? The Morten group tweet above is using 90%. Why would the figures be different?
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The most likely thing is that with larger case numbers the original figure derived by machine learning on a test sample, has not replicated precisely - going from 98% to 90%.

Figures like this need to be taken in context. If just 10% of healthy people come up 'positive' and ME has a prevalence of 1 in 500 (say) then there will be 50 false positives for every real one. That need not be a problem but it emphasises how complicated assessing tests is.
 
InitialConditions said:
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.
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I help run a ME/CFS research fund. A lot of people with standing orders are healthy partners, siblings and parents of patients. These people’s ability to work has been affected little if at all (though the household budget would of course often have been affected in the case of partners).

I can understand that most people with the illness can not set up large regular donations. But large numbers give nothing to research and many who do donate don’t give via regular giving.

My impression is there can be a chain reaction of sorts: get the patient interested in raising money privately for research and often family and friends may fundraise and/or donate.
 
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Andy said:
98% is from the published paper, 90% is from the unpublished paper.
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And the 98% accuracy is a bit misleading. From the comments on our thread that discusses the paper, they had 5 ME/CFS subjects, 4 of whom showed the higher levels of phenylalanine in their cells, and 5 controls.

The 98% accuracy related to the assigning of the Raman spectra of individual cells (from memory 260 or so cells) to 'CFS' or 'healthy'. I assume that this assigning was done using a number of spectral peaks, not just phenylalanine (as, with 4 out of 5 ME/CFS subjects being found to have higher levels of Phe in their cells, then just using Phe spectral peaks would probably mean the percentage accuracy could not be more than 80%).

We've seen lots of studies that find a combination of metabolites or cytokines that can separate a small number of specific ME/CFS people from a small number of specific healthy controls, but they don't tend to replicate well. If the pool of metabolites that can contribute to a possible combination is big, and the number of participants is small, it could easily just be chance. Or the result might be due to lifestyle factors e.g. being less active or eating healthier or taking a multivitamin or their cells were more dehydrated, or something else.

I think, if the Morten group is asking for funds from the general public, then they have to explain more about what they have found that warrants donations. Otherwise it's just 'trust us, we know what we are doing'. We've seen far too much of that in ME/CFS research; we need researchers to do better than that.

I agree that a good approach for deciding where to put our scarce funds for research is to pick a funding charity that seems to make good decisions, and give them your money. At least someone is asking questions of the researchers and trying to keep them accountable. If a researcher can't convince such a funder, or doesn't see the value in working with such an organisation, I think it's not an encouraging sign.


IC Conditions 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.

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.
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I agree with IC Conditions. For sure, not all, or even most, of the problem with ME/CFS research funding lies with the research teams writing proposals. But I suspect that there are members here who could help this group write better formulated proposals. We've seen studies that this group has been involved with that have been a bit muddled and misconceived.

That's not to say that the research idea is bad. This Raman spectroscopy idea of looking to see how much of various molecules are in cells seems like something worth doing. But we need to know what they have found that convinces them that it's worth continuing before giving them money.
 
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One possible issue is this sort of level of funding is larger than the sorts of grants the UK ME Association (with its commitment to the biobank), ME Research UK, Solve ME/CFS Initiative and Action for ME generally give out. Probably the only private research funds that give out that sort of money are the Mason Foundation and the Open Medicine Foundation; the former I think only funds research in Australia it seems and OMF concentrates on their existing centres. Invest in ME concentrate on their research hub in Norwich.

I think the sort of sums being sought would be difficult to raise currently using crowdfunding.
 
One important question is: if true, would it even matter? As in, is this something that other medical professionals will look at and find relevant? Even if true?

Because we've already been through a cycle of duplication with LC and still zero interest for it. Still nothing but small entry-level studies. Still not being leverage to reduce costs or speed things up. Koroshetz made a comment about trials in the RECOVER initiative and indicated that they haven't figured out how to do clinical trials for less than $60M a pop, to answer a single question, which is absurdly wasteful and inefficient.

I'm pretty sure that the main parts of the puzzle have been individually figured out for a long time, it's just that no one is putting it together. So if this is another relevant piece of the puzzle that simply gets tossed off the table in the end...

There basically isn't any more money now than before LC, most of the research out there is such pure trash it doesn't even count. I don't think this will be figured by funding individuals teams, this effort needs to be coordinated, to build on itself. It's almost like academia is built to fail at problems like this, the current model couldn't fail any harder.
 
rvallee said:
One important question is: if true, would it even matter? As in, is this something that other medical professionals will look at and find relevant? Even if true?
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I think if true, if it was really possible to take some cells and do this spectroscopy and identify a signature of particular molecules that was diagnostic, then it would matter. For diagnosis, and for providing clues as to what the underlying problem is.

It's the progress towards 'if true' that I think we need a bit more information around. Not definitive information of course, but some indication that what was found in the first small study has been found in a bigger sample.

tweet said:
"It is crucial we keep this work going as we look to move the approach into studying single cell immune function in live cells in vitro.
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This worries me. Nail down the spectroscopy finding, for goodness sake, before heading off into studying immune function in live cells. A scattergun approach with researchers moving on from promising findings to other really quite different things is a problem. Does it mean that the promising findings didn't hold up?
 
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I have mentioned before that I am a bit sceptical about the value of measuring metabolism in PBMC. Most PBMC are lymphocytes like the one above. (A few are monocytes, which have much more cytoplasm and that makes things tricky if the proportions change for trivial reasons.)

As indicated the blood lymphocyte is essentially a cell doing nothing - in fact a nucleus (purple) with just enough cytoplasm (greyish) to keep it ticking over until it finds a lymph node to do something in.
 
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