Open UK: Investigating the presence of Micro Clots and other blood factors in people with ME/CFS, Sheffield, Caroline Dalton, Ryback, Hillier

Kitty said:
I gave my samples today. It was very straightforward, and I was only in the building for about 15 minutes.

I could have stayed and rested if I'd wanted to, but as I was visiting a relative afterwards I left as soon as they'd taken the bloods.

Good luck to the team with the study, it's great to hear they've got their numbers.
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Thankyou so much for coming! We've had a really good response in the sign ups and we hope this will translate to a good turn out of people turning up to donate. I hope the trip wasn't too tiring for you, it means a lot that the ME community are so willing to use limited energy resources to donate.
 
chillier said:
I hope the trip wasn't too tiring for you
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The only difficult bit of the whole experience was down to my bloody sat nav! It insisted on trying to approach from Howard Street, which is pedestrian only, and was just taking me on laps of the city centre. I decided to switch it off and combine my non-existent sense of direction with half remembered knowledge of what the area looked like decades ago, navigating by landmarks that aren't even there any more. I found it straight away.

I hope everyone manages to get there, or can at least be rescheduled if they're not well enough on the day.
 
LarsSG said:
Does anyone know which parameters they were looking at in blood (@chillier)? Given the results in Increased von Willebrand and Factor VIII plasma levels in gynecologic patients with Post-Acute-COVID-Sequela (PASC)/Long COVID and other research by Pretorius and others, I hope it includes von Willebrand Factor.
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The samples are being used for two projects related to microclots and related to cell phenotyping in serum swap experiments. I can't speak to the specific plans of the microclots work as I'm involved with the latter project but I'll pass this along.

In the serum swap experiments the main focus is phenotyping the cells themselves/ replication of previous work - we probably won't look for specific factors initially but of course that's the long term aim depending on how these first experiments go.
 
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"Female healthy participants needed for ME/CFS study in Sheffield! Can you take part in our study as a healthy participant? Or if you're an ME/CFS patient, can you share this flyer with a friend (not blood related)? Find out more at: https://forms.gle/MWPVwXZzivpc8wui9 #MEResearch #MECFS"

This is our second round of sampling due to the large amount of ME/CFS patients who signed up - we want to sample as many of those ME/CFS patients as we can. However we are still in need of more healthy controls for our study. If any S4ME users who also use twitter feel like sharing this widely that would be greatly appreciated!

We don't have any more slots to book in people with ME/CFS who haven't already filled in the screening questionnaire for the study. So we are currently just looking for sign ups from healthy participants.
 
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The link to Twitter above is to Audrey Ryback posting,

"We still urgently need 30 more healthy volunteers to carry out the study as planned. Please share with anyone eligible/who can spread the word in Sheffield! Volunteers get a £25 shopping voucher. Thanks to all who signed up & shared so far, every sample makes a huge difference!"
 
Kitty said:
It's great to hear that they're doing studies like this. In case it's of any help to the team for future studies, @chillier, the sort of thing I'd need to know if I weren't local or didn't have access to a powered wheelchair are:
  • Which building is it, and how far is the entrance from the nearest vehice access?

  • Are there any steps or long slopes to approach the building once you've left the car/taxi/etc? How many steps, how long a slope?

  • Is there a door entry system where you have to wait to be let in? If so, is there anywhere to sit next to the door?

  • If you can just walk in, what happens then? Might you have to wait behind another couple of visitors for a receptionist to tell you where to go? If so, is there anywhere to sit where you could still signal to them that you're waiting to be signed in? (So often this is one of the most stressful parts of a visit. Even access officers don't always think it through, because they can't imagine being OK to walk a few metres into the building but not being able to cope with standing at a counter for half a minute.)

  • Once you're checked in, how many metres are there between the door to the street and the clinic? Are there places you could stop for a sit down if you needed to? (Maintenance teams sometimes already have the inexpensive laser devices that make measuring this easy, and may even do it for you if you lack scruples about bribes.)

  • Are there any other places where you might have to stand and wait, such as busy lifts or subsidiary reception desks?

  • Is there an accessible toilet that's big enough to turn a wheelchair around in? (Not a given!)

  • If the schedule got held up, is there anywhere to wait that's not a noisy thoroughfare?
That's only one person's experience of visiting many buildings like this in the course of my former job—there will be different things that other people struggle with. It assumes the buildings have wheelchair access, but I think this campus does.
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Such a good breakdown of what it’s like!
 
Blog from @Simon M about this work with a focus on the non-clot aspects.

Researchers hunting for ‘something in the blood’ of people with ME

"Several small and quite different ME/CFS studies have come up with the same tantalising finding – and now a team of two very talented resarchers, one a patient, are embarking on a robust replication that could help move the whole field forward.

The finding? That if you take blood from people with ME/CFS, and add it to healthy cells grown in the lab, it changes the cells’ behaviour, while blood from healthy people does not.

This could be a major biological clue to what is going wrong in ME/CFS, if the results from the early studies – all small and most unpublished – hold up. Confirming the finding would be a major boost to efforts to understand the mechanism of the disease and could lead to a diagnostic test.

Enter Dr Audrey Ryback and Charlie Hillier, her partner both in life and science. Audrey gained her PhD last year on a prestigious Wellcome programme, won funding from Action from ME, and is now working with Professor Chris Ponting at Edinburgh University."

https://mecfsresearchreview.me/2024...for-something-in-the-blood-of-people-with-me/
 
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