2026: International: Request for help with a cost-benefit analysis of Sequence4ME and LC

Chris Ponting

Chris Ponting

Senior Member (Voting Rights)
Post copied from the Sequence4ME thread

Dear Science for ME hive mind, I need your help.
I believe that the Sequence ME & LC project needs to make the economic case for further funding, beyond the ~£5m already raised: we need ~ £15m more.
In short, I need guidance in how a cost-benefit analysis of this project should be performed, and who with the skills/background might be able to do this?
Please do get in touch if you have ideas via email. Thanks!
 
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Chris Ponting said:
Dear Science for ME hive mind, I need your help.
I believe that the Sequence ME & LC project needs to make the economic case for further funding, beyond the ~£5m already raised: we need ~ £15m more.
In short, I need guidance in how a cost-benefit analysis of this project should be performed, and who with the skills/background might be able to do this?
Please do get in touch if you have ideas via email. Thanks!
Click to expand...
Could you provide the email address here?

This in the kind of thing I would have been doing at work when healthy but I have no chance at being involved now.

My first two thoughts are to look at the more direct costs for society for someone having ME/CFS: lost income (i.e. taxes), healthcare usage, benefits, and so on, and to look at the cost of running drug trials and comparing the historic success rates with or without genetic data (you’ve spoken about this earlier). I would be surprised if these analyses have not been done before but I have not kept track of it.

Tjenesten og MEg and the Norwegian MEA has data on e.g. wage trajectories and impact on carers/family in Norway:

Fafo-prosjekt: Tjenesten og MEg

Om møtet mellom de ME-syke og deres pårørende og offentlige institusjoner. Registerdata, kvalitative intervjuer og en egen survey vil bli tatt i bruk for å lære mer om denne pasientgruppen. Prosjektet er et samarbeid mellom SINTEF or Fafo.
www.fafo.no www.fafo.no

Grethe Reinhardtsen
grethe@me-foreningen.no
Trude Schei
trude@me-foreningen.no

I would also consider framing SequenceME as a catalyst, accelerator and enhancer of other research, telling funders that if they fund this first they are going to get a lot more bang for their buck with future research because it’s going to be more targeted. Genetic data might also be what finally draws in big pharma (and their deep pockets), and you can probably find examples of research fields growing massively in the wake of new and exiting data. That could conceivably happen with ME/CFS as well and we’re already seeing some examples with e.g. James Cox and his team looking into leads from DecodeME.
 
Utsikt said:
Could you provide the email address here?

This in the kind of thing I would have been doing at work when healthy but I have no chance at being involved now.

My first two thoughts are to look at the more direct costs for society for someone having ME/CFS: lost income (i.e. taxes), healthcare usage, benefits, and so on, and to look at the cost of running drug trials and comparing the historic success rates with or without genetic data (you’ve spoken about this earlier). I would be surprised if these analyses have not been done before but I have not kept track of it.

Tjenesten og MEg and the Norwegian MEA has data on e.g. wage trajectories and impact on carers/family in Norway:

Fafo-prosjekt: Tjenesten og MEg

Om møtet mellom de ME-syke og deres pårørende og offentlige institusjoner. Registerdata, kvalitative intervjuer og en egen survey vil bli tatt i bruk for å lære mer om denne pasientgruppen. Prosjektet er et samarbeid mellom SINTEF or Fafo.
www.fafo.no www.fafo.no

Grethe Reinhardtsen
grethe@me-foreningen.no
Trude Schei
trude@me-foreningen.no

I would also consider framing SequenceME as a catalyst, accelerator and enhancer of other research, telling funders that if they fund this first they are going to get a lot more bang for their buck with future research because it’s going to be more targeted. Genetic data might also be what finally draws in big pharma (and their deep pockets), and you can probably find examples of research fields growing massively in the wake of new and exiting data. That could conceivably happen with ME/CFS as well and we’re already seeing some examples with e.g. James Cox and his team looking into leads from DecodeME.
Click to expand...
Thank you. Email: chris.ponting@ed.ac.uk, website: https://edwebprofiles.ed.ac.uk/profile/chris-ponting.
 
@Chris Ponting Perhaps you could approach Dr. John Cullinan (Professor of Economics at the University of Galway) for advice or to engage him. He has experience working on ME/CFS. His email is john.cullinan@universityofgalway.ie.

pubmed.ncbi.nlm.nih.gov

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study - PubMed

<span><b>Background:</b> Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

www.rte.ie

Dr John Cullinan

Latest articles by Dr John Cullinan
www.rte.ie www.rte.ie
 
Utsikt said:
and to look at the cost of running drug trials and comparing the historic success rates with or without genetic data (you’ve spoken about this earlier).
Click to expand...
The Recover trials are a great example of how little or nonexistent successes there are when you throw money and drugs at a disease that you barely know the pathophysiology of. I don’t know how feasible it would be to blast a huge project in your cost-benefit analysis (I imagine it could be seen as rude), but here’s Hutan’s summary of their trials so far:
Hutan said:
So, updating the list of RECOVER trials:
RECOVER-TLC
  • Baricitinib - enrolling
  • GLP-1 receptor agonist - planning stage
  • Low dose naltrexone - planning stage
  • Stellate ganglion nerve block - planning stage

RECOVER-CT
  • RECOVER- VITAL: Paxlovid as a treatment - DIDN'T WORK

  • RECOVER-NEURO: Brain HQ - online cognitive training -DIDN'T WORK
  • RECOVER-NEURO: PASC CoRE - online goal training -DIDN'T WORK
  • RECOVER-NEURO: Transcranial Direct Current Stimulation - DIDN'T WORK

  • RECOVER-AUTONOMIC: IVIG for severe POTS
  • RECOVER-AUTONOMIC: Ivabradine for moderate POTS - DIDN'T WORK

  • RECOVER-SLEEP: Modafinal and solriamfetol for insomnia
  • RECOVER-SLEEP: Melatonin and light therapy for complex sleep disturbances

  • RECOVER-ENERGISE: Exercise for exercise intolerance
  • RECOVER0-ENERGISE: 'Structured Pacing' for post-exertional malaise
Click to expand...
 
We have this thread that lists some of the analyses of the impact of ME/CFS
rvallee

Thread 'Analyses of the economic costs and impacts of chronic illnesses like ME/CFS and Long Covid'

Several analyses of the estimated costs and economic impacts of chronic illnesses like ME/CFS and Long Covid have been published. They all show a heavy economic burden, amounting in the trillions in economic losses, that probably make the strongest argument to convince governments and policymakers that solving them is far cheaper than letting them continue to devastate lives.

This thread is dedicated to listing them for convenience.
  • Like

They might be handy as references.
Also clicking on the 'economic impact' tag (top left of the thread) brings up three pages of threads of various relevance.
 
Making cost-benefit analyses at national levels was something I used to do as part of my work - not for health issues though. I know about things like the selection of discount rates, words like internal rates of return, sensitivity analyses on assumptions.

My biggest tip would be that none of this is science, at best, it is persuasion based on facts. It's just a matter of building a defendable case, one that looks plausible, and in this case, probably conservative. There will be many other answers that are also defendable, so it's not worth worrying about the details too much.

I think it should be easy enough to make a strong case for a very large value, so don't try to make it a comprehensive sum of every possible benefit. Probably no one that matters in terms of making the decision will read the detail. If you try to quantify too many things that are a little bit of a stretch, it's too easy for someone to jump on what they see as an error and write off the whole analysis. Just go with what is easy to defend and explain and is compelling, and make it clear that there are many other benefits that you haven't quantified.
i.e. make your spreadsheet model with the key quantitatively compelling factors, but list other factors that are harder to quantify as well, ie. 'look -there's all this other stuff too'.

I imagine you will want to get an academic with some sort of reputation in this field? Actually though, someone from a big consulting firm could probably do a great job too and actually might even be more persuasive when it comes to governments.

Think about who you are needing to convince. Do they often use a particular consulting firm e.g. developing strategies for organisation reform or something? It could be worth the investment to get that company to make the case for you. As we all know, it's often not so much the quality of the message as who delivers it.

Always happy to try to help if you think there might be something I can do, a proofread or something.
 
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