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.

 

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

 

UK ME/CFS Biobank Steering Group update via MEA:

https://meassociation.org.uk/2025/04/update-uk-me-cfs-biobank-steering-group/

 

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

 

The CureME team has a lot of stored samples

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.

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.