UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day

Robert 1973 said:
Thanks. The letter I’m minded to write is specifically about the costs.

To me the 1.35m people and £23.5 billion figures seem inflated.

I think at least 400,000 is more accurate for ME/CFS prevalence (based on Chris P’s study last year).

I don’t know what “ME like illnesses” are and I’m not sure that anyone else does. Does it include PVFS and LC that typically resolves without treatment within 2 years?

This has been discussed at length but I think it’s counterproductive to overestimate prevalence or costs. Even using the most conservative figures the costs to lives and the economy are huge so why risk using figures that can be shot down?

NB I’m not criticising the replies above. They are much appreciated. I’m just trying to find a reliable, conservative estimate of the economic cost.
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I guess you could maybe find costs of general “disability and not working” category and shrink that to 400,000 as a general figure?

We sort of don't cost as much as we should, because we don’t use the NHS as much as someone with say, MS.
 
Robert 1973 said:
I’m just trying to find a reliable, conservative estimate of the economic cost.
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Maybe multiply the 400,000 by the monthly UC rate (£424.90) for single people?

You can halve it, quarter it, or reduce it by 90%, and it's still a mind-boggling cost per year. And it's before allowances like PIP, the loss of income tax and NICs, and any healthcare above and beyond routine general practice.
 
Lou B Lou said:
Beth Dobbins latest story is on BBC Sport also. With emphasis on creating 'a level playing field' for ME research funding.
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I really love that framing. We've had this message turning down special funding on the basis that it's usually not how it's done, but the truth is that this illness, both care and research, have been impeded, stifled, suppressed and discouraged at all levels. Doing the right thing requires compensating for that, doing more is what putting it on a level-playing field comes down to because it's been held back intentionally for so long.

Great messaging.
 
@Robert 1973 I agree the figures are very problematic. Here is what Tessa said to government. (I’m sure I heard the £23 B excluded benefits???)

TM seems to have simply extrapolated earlier data (250000-404000) ie a rough doubling of the £3.3 B to arrive at her £7B and so is probably an underestimate (no inflation etc).

The calculation to arrive at £23B is not a simple scaling up of costs from 250000 people to 1.3million. But it’s the figure presented to Government.



Quote by Tessa Munt early in transcript:

I would like to look at some of the figures. The most recent estimate of the economic impact of ME was for 2014-15—10 years ago—and was carried out by 20/20health. The cost was then calculated at £3.3 billion annually, based on only 260,000 people living with ME. With many more affected following the pandemic and a decade of inflation, that cost will now be much higher. Even the most conservative estimate of current numbers living with ME, excluding cases linked to long covid, puts them at 404,000 patients. Does the Minister accept, using that conservative estimate and adjusting for inflation, the annual economic impact of ME today is likely to be at least £7 billion? If those living with ME-like symptoms following covid are included, we could be approaching an annual cost of £20 billion. Surely it is time for the Government properly to cost the impact of a condition that affects so many, rather than brush it under the carpet, and to invest accordingly.
 
Jonathan Edwards said:
The advocacy community is shooting itself in the foot.
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In what ways do you mean?

Jonathan Edwards said:
'complex neuroimmune disease that affects multiple body systems'.
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What would be a better description?

Personally, I don't think there is a single system in my body that works as it's supposed to since I've had ME/CFS.

I can see why ME is is preferred, as CFS gets shortened to chronic fatigue, or is the only part people hear, and they just think you're a bit tired, and everybody is tired, so it's not a real thing.
 
I agree a lot of these numbers seem to be people trying to (for good reason) make things sound important, but in inflating claims they undermine because nobody takes it seriously. Better to take a conservative approach and then go for ‘at least’.

So I did some quick numbers, if we just look at the 400k figure and numbers which suggest 50-75% leave the workforce, so let’s say 250k. And then take average income tax and NI receipts (around £6400) from average wages we have 1.6 billion pounds in lost revenue a year.

That is an extremely conservative measure, doesn’t account for the costs of welfare (which would easily double the figure if not triple it) or care, or lost revenue from families caring for people. So yes the real cost is going to be much higher.

But the message ‘get 250k people off welfare and back into work while raising at least £1.6 billion in tax revenue’ seems a powerful enough message to get a paltry few million for research from even the most uncaring of audiences!
 
obeat said:
@Robert 1973 I think @Chris Ponting would have up-to-date figures
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Currently, my best guess: Updating the UK’s 2017 estimate of “at least £3.3 billion”. Accounting for cumulative inflation since then (36.55%), increasing the ME/CFS prevalence from 250,000 to 400,000 (Samms & Ponting, 2025a, Samms & Ponting, 2025b), and adding 260,000 to 1,174,000 people who have long Covid symptoms meeting ME/CFS diagnostic criteria (ref; ref), we can update this to: £11.9 billion to £28.4 billion, annually.
 
JellyBabyKid said:
In what ways do you mean?
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In one specific way. It is now all in the other thread. An admin decision was made to move it out of here, but just briefly here: It is about missing the opportunity to use the press to spark the first flame of interest in enough of those in the academic medical community, who hold the research purse strings and advise on service structure, to have some hope of getting things moving.

JellyBabyKid said:
Personally, I don't think there is a single system in my body that works as it's supposed to since I've had ME/CFS.
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But that is no guarantee that the disease affects those systems as such - in pathological terms, which is how this is interpreted, and as a result billions of dollars have been wasted on blind alley research. Someone with multiple sclerosis will find that none of their body systems seems to work but it is a purely central nervous system disease. My point is about the potential impact of this language on the people with the purse strings, not the general public.

JellyBabyKid said:
I can see why ME is is preferred,
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We can all see that. But the point of the article is to get funding for research and meaningful care. The ME term is guaranteed to ensure the ask falls on deaf ears. Shooting yourselves in the foot.
 
NelliePledge said:
In the current version of the BBC article the end is a quote from DHSC that refers to the plan and the partial funding of sequence it also says something about funding trial into potential new treatments what is that supposed to be?

Here’s the sentence
"That is why we are supporting cutting edge research into ME, including a first-of-its-kind programme studying genetic factors behind the condition and a clinical trial for potential new treatments.
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Compare this statement quoted in the House of Lords/ House of Commons thread today:

James Frith The Parliamentary Under-Secretary for Health and Social Care​

No clinical trials are currently being funded by the Department on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, recently, two application development awards were made to projects intending to investigate the feasibility of a new clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including long COVID and ME/CFS. The National Institute for Health and Care Research has awarded around £398,000 to two projects: “Designing an inclusive platform trial for people living with Post-Acute Infection Syndromes (PAIS)” at the University of Leicester and “D-SUPPORT-ME" at the University of East Anglia. Further information on clinical trials is available at the ISRCTN registry at the following link:

https://www.isrctn.com
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"D-SUPPORT-ME" turns out to stand for "Development of a Stratified Updatable Platform Trial – Patient-Orientated, Randomised, and Tailored for Myalgic Encephalitis"
research-portal.uea.ac.uk

Development of a Stratified Updatable Platform Trial – Patient-Orientated, Randomised, and Tailored for Myalgic Encephalitis (D-SUPPORT-ME)

research-portal.uea.ac.uk research-portal.uea.ac.uk
Andrew Wilson spoke at the Invest in ME conference this year https://s4me.info/threads/iimec18-invest-in-me-conference-2026.51723
 
Eleanor said:
"D-SUPPORT-ME" turns out to stand for "Development of a Stratified Updatable Platform Trial – Patient-Orientated, Randomised, and Tailored for Myalgic Encephalitis"
research-portal.uea.ac.uk

Development of a Stratified Updatable Platform Trial – Patient-Orientated, Randomised, and Tailored for Myalgic Encephalitis (D-SUPPORT-ME)

research-portal.uea.ac.uk research-portal.uea.ac.uk
Andrew Wilson spoke at the Invest in ME conference this year https://s4me.info/threads/iimec18-invest-in-me-conference-2026.51723
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No word on what they're planning on trialing. I hope its better than what RECOVER have managed so far.
 
Jonathan Edwards said:
The talk appears to be a student lecture on trial design from someone who probably has no real idea what matters. Nothing about a new trial as far as I can see. How on earth this gets funded goodness knows.
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What I heard sounds like they have been funded to do some kind of initial scoping exercise on how to do this platform for ME/CFs rather than having something worked up and ready to start testing repurposing of any actual drugs .

I wonder if they would be open to engaging here on the lines the WE&ME proposal folks have been?
 
Eleanor said:
"D-SUPPORT-ME" turns out to stand for "Development of a Stratified Updatable Platform Trial – Patient-Orientated, Randomised, and Tailored for Myalgic Encephalitis"
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Dmitry Pshezhetskiy was an author on the EpiSwitch 3d genome biomarker thing https://s4me.info/threads/beyond-ge...sd-ra-ms-2026-hunter.52050/page-2#post-718725
 
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