Updates from the UK ME/CFS Biobank / CureME team

Copy of tweet:

CureME - UK ME/CFS Biobank
@mecfsbiobank
We're thrilled by the amazing interest in our upcoming hybrid event on September 19th at LSHTM! To join us, please register by clicking the link: https://forms.office.com/e/HY35YL4u8a or scan the QR code below. We can’t wait to meet you, share our latest research, and answer your questions!

 

An earlier tweet for what it is worth:

Copy of tweet:
CureME - UK ME/CFS Biobank
@mecfsbiobank
Save the Date On September 19th, join the CureME team at LSHTM from 5 PM to 8 PM for a research exchange. We invite ME/CFS patients and researchers to share insights and connect!

 

I had an email but there’s not a lot more info

 

Link to the zoom has been emailed and posted on their facebook page

 

Link to watch and download the video.
https://bit.ly/4didHTK
I’ve not listened yet but from a skip through it has detailed presentations from various people on the different studies that have been taking place and their findings, looks very interesting.

 

Excellent, thank you!

 

It’s no longer there. No idea if it is anywhere else yet: nothing has been posted to their Twitter account.

 

Maybe a temporary problem? The link is on their Facebook page and there are comments about issues accessing it but I just checked and it seems fine.

 

Thanks, it’s back working.

 

End-of-year updates from the CureME team


https://mailchi.mp/lshtm/our-new-study-is-underway-16529659?e=90f7243e18

 

From Facebook


Join our first #CureME event of the year

Our interactive webinar will focus on: "Building Bridges: Community Strategies and Research Insights from the CureME Team for #MECFS Study Participants"

Monday 10 February, 14.00
Online

More details ⬇️
https://forms.office.com/e/JCx5NP1ZYn

 

Hi Dolphin

That link didn't work for me at all. I got a message saying "This form is not accepting responses"

I did a quick search on the Cure ME website and found this link for events which lists this webinar:

https://cureme.lshtm.ac.uk/index.php/me-cfs-events/

 

I think I read there were only a small number of spaces, maybe 25? So good chance they reached their limit.

 

Yes, limited space but recording available after. This from an email I received

 

Dr Jacqueline Cliff Has been doing the HHV-6 reactivation study which is ongoing
https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome

 

Includes video recording
https://cureme.lshtm.ac.uk/index.php/2025/03/10/first-cure-me-webinar/
First Cure-Me Webinar

Read more
Mar 10, 2025




Building Bridges: Community strategies and research insights from the CureME team and ME/CFS study participants

Thank you to everyone who joined out first interactive webinar, bringing researchers and participants together, which we held this February with guest speaker Dr Jaqueline Cliff from Brunel University.


Dr Cliff gave a presentation on Dr Sook’s recent publication “Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, explaining the hypothesis of the study and the initial results in an accessible way.


The CureME team and the participants to learned much from each other as they interacted online following the talk. It gave us a clearer idea of the needs and priorities of people with ME/CFS, which is invaluable as we discuss research direction and how we can make study participation more ME/CFS friendly.

We would like to thank the participants again for sharing their thoughts and for the very informative discussions.


Please watch the recording and feel free to post something in the comments box if you would like to share your thoughts on the questions in the interaction sections, or if you have any questions for Dr Cliff.

We look forward to seeing you for the next webinar.


.We look forward to your feedback and to the next webinar.

 

I encourage people to watch Dr Jaqueline Cliff's presentation on data from her teams NIH funded study on HHV6B saliva vs T cell and HHV6B antibodies, some of it preliminary. Along with DecodeME this is one of the two top funded teams researching ME/CFS in the UK.

At ~54mins a CureME(?) team member states that they are concerned about the continuation of funding due to the changes at the NIH......

 

So the question is why do Severe ME patients not show a correlation between anti-HHV6B antibodies and cytotoxic Tcell activity!!!! I think this was a preliminary result but it seems very significant to me. What do you make of this finding presented by Dr Cliff @Jonathan Edwards? Dr Cliff seemed to think that it was because severe ME/CFS didn't have reactivation but why would that be? She did present that Severe ME had less cytotoxic T-cells than mild/moderate but I didn't catch if they have similar levels of HHV6B or not in their saliva - do you know the answer to that?.

 

I have emailed Dr Cliff today, suggesting that she repeat her experiment on a cohort of people who were mild for years before deteriorating, as they may provide clues as to what is changing between mild and severe ME, and why the finding doesn't replicate in severe.

In the email I also argued that it would be a mistake to conclude from these findings that severe ME is a separate subgroup or disease to mild/moderate, which seems to be what she implies at a couple of points in the webinar.

Their hypothesis seems to be that PEM is driven by HHV-6B reactivation, but this does not account for the fact that PEM is most severe in severe patients, and that many of them became severe by repeatedly triggering PEM. (Damn, I put that much better here than in the email).


I have to be honest and say that another finding not replicating in severe ME has filled me with dread. It would be very easy for researchers to only focus on mild/moderate pwME after this and the IGHV3-30 finding. But I think that this would not just be a moral mistake but a methodological one.

I hope I was able to get my points across to Dr Cliff politely but brain fog is the enemy of email etiquette!