Updates from the UK ME/CFS Biobank / CureME team

I think you hit the nail on the head @V.R.T. I was mild/moderate for decades before the switch to Severe. When mild moderate my lymph nodes were often swollen. Since becoming severe that does not happen even with infection which implies to me that my immune system is not behaving in the same way.

I think the data Dr. Cliff presented in the talk, and their previous work such as Cellular immune function in myalgic encephalomyelitis/chronic fatigue syndrome (2019) show that T cells behave differently in Severe ME. There must be a big clue there.
 
The other thing I've just thought of is we need to figure out why some people who are severe for years improve back to moderate/mild.

I would be so interested to see a study that compared deteriorators and improvers against the original cohorts from this study.
 
V.R.T. said:
The other thing I've just thought of is we need to figure out why some people who are severe for years improve back to moderate/mild.

I would be so interested to see a study that compared deteriorators and improvers against the original cohorts from this study.
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And if they actually are the same. I get the impression lots who have improved are more fragile and conscious of being dependent on strict limits and pacing ie less bandwidth / room for error vs being mild/moderate and never having been more severe

but I might be wrong or have got the wrong impression- I would be intrigued to hear from those who have been there.

there are some strange concepts to be unbundled like when does a relapse become/feel it has become a worse level more permanently etc

ps I agree with you on the issue if they are being seen as different diseases rather than something additional breaking /switching off . Given I don’t know how many got to severe due to over exertion over a continuous period (without sufficient recovery meaning constant deterioration and threshold reduction = acceleration if life doesn’t get easier at same pace) .

I think in previous studies where things haven’t been present in more severe it has been suggested/assumed it was the system exhausting in some way that means said reaction/symptom didn’t happen
 
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Nightsong said:
UK ME/CFS Biobank Steering Group update via MEA:

https://meassociation.org.uk/2025/04/update-uk-me-cfs-biobank-steering-group/
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noted that Ashley Dalton has taken over as Parliamentary Under-Secretary of State for Public Health and Prevention. He also mentioned that the publication of the Delivery Plan has been delayed and is now expected to be released by the end of June. Everyone was disappointed that there would be no additional funding for ME/CFS research, as many had hoped for something like the dementia plan from David Cameron's tenure. The new minister is aware of the feeling of disappointment.
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looks like the intention is set. What a ride they've taken us on. It didn't take three years for the funders to decide to offer more unspecified support to researchers to produce more high quality applications and the MRC have been banging on about the need for this for years. This was including giving an hour lecture on the subject at the 2016 CMRC conference, the conference that only gave ten minutes for a presentation on the CMRC commissioned “global (dire) funding situation” report
 
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The CureME team has a lot of stored samples
stressed the need to shift focus from sample collection to utilising the 30,000+ stored samples, which are increasingly costly to maintain. The long-term quality of these samples was discussed; the lab team were reassuring and regular checks will be introduced
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ME Association lists the wrong funder for the HHV6B study. It should be the US NIH/NIAID and not the UK NIHR. The university project page does list the correct funder.
also updated the group on the HHV6B project which she is leading with Eliana Lacerda (funded by the NIHR). This work follows-on from their pilot study which was published in 2021 (Lee et al., 2021). The project is progressing very well, with the first phase completed, and Aim 2 well underway and they are about to start on Aim 3 which will look at collecting 30 samples from Long Covid patients.
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The ME/CFS cell impedance measurement project is reporting a proposal for a follow up project but the current project doesn't seem to have reported results. Not sure why that is.
reported good progress on the proposal involving Fatima Labeed and Mike Hughes which will be submitted very soon (this is follow-on work from the study funded by MEA and ME Research UK on electrophysiological properties of cells)
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Reposting @Nightsong "News from the USA" post.
Nightsong said:
Nature is reporting that NIH plans to halt funding to labs & hospitals outside the US:

https://www.nature.com/articles/d41586-025-01361-z

Anyone know (assuming this goes ahead) if this is likely to affect any ongoing ME studies, biobanks - are there any dependent on NIH funding?
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If implemented this could affect the HHV6B work at Brunel which has NIH/NIAID funding. That group might also be the same group who are the "lab colleagues" for the Cure ME Biobank. If so can they still maintain that role after the funding cut? Anyone know?
CureME April Steering Group Update said:
The CureME research team are based at the London School of Hygiene & Tropical Medicine, with the clinical team within the Department of Clinical Research, while lab colleagues work within the Department of Life Sciences at Brunel University.
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Email from IACFS/ME:

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Dear IACFS/ME Supporters,

We would like to share with you the following message from Caroline Kingdon, RN, MSc, at the UK ME/CFS Biobank.

If you have any questions please send them directly to the Biobank via the links below.

Sincerely,

IACFS/ME

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Are you interested in receiving free samples for your research into ME/CFS? The UK ME/CFS Biobank seeks to accelerate research by providing high-quality samples at no cost using a competitive process.

The UK ME/CFS Biobank stores over 30,000 aliquots of blood samples and data generously donated by >600 donors including people living with mild/moderate and severe ME/CFS, with multiple sclerosis (MS), and healthy controls. Participants with ME/CFS have longitudinal samples at up to 6 timepoints.

Using biobank samples saves time and costs on lengthy ethical processes, recruiting and meeting with participants, the collection, processing and storage of samples, and data collection. More details on sample types and the accompanying data available can be found on the website.


If you would like to apply for samples free of all costs of collection, processing and storage, please send a brief outline for a research proposal to the Biobank. Full details for applications are on the website. These free samples are available for a limited time only.
 
Following the success of our first interactive webinar in February, we’re delighted to invite you to our second event in the series:
“Building Bridges: Community strategies and research insights from the CureME team and ME/CFS study participants”.

This live online seminar will take place soon, and registration is now open.

We are especially pleased to welcome Dr. Luis Nacul as our guest speaker. Dr Nacul who remains part of the CureME team but has been working in Vancouver, will be discussing a clinical trial of naltrexone in ME/CFS that he is supervising in Canada. These discussions will be in accessible language and are aimed at people living with ME/CFS, their caregivers, and interested researchers.

As with our first webinar, we’ll dedicate time to discussion and questions. We’re eager to hear your views and reflections on the topic, and to continue shaping our research around the lived experience of ME/CFS.

Can’t attend live? Don’t worry — a full recording will be made available after the event so you can catch up at a time that suits you.
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They are having Luis Nacul speaking who has a lot of experience running a multidisciplinary clinic, much the same as what the MEA seems to be working hard to promote and support in the UK. But, rather than have him speak about his recent paper showing that his clinic has not achieved very much, he will be talking about a trial that it is progress - it's not actually completed.

I don't mind a good quality trial of naltrexone, but I would not have thought there would be much to say mid-trial, especially of a treatment that, at best, has only an incremental benefit. The time has passed for getting feedback on the trial design. There's not much point highlighting the treatment and discussing how naltrexone works if the trial finds that there is no benefit - all you have done is promote a useless treatment. And, if the trial is appropriately blinded, Luis won't have any idea if it is working yet.

A discussion about the paper on the lack of impact of the clinic would be highly relevant to the webinar series title of 'Building Bridges: Community strategies and research insights from the CureME team and ME/CFS study participants'.

I note that the discussions and questions are permitted. I would be interested to know how Luis feels about the fact that the paper showed that his clinic has, to date, been of little benefit, and what he plans to change.
 
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