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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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London School of Hygiene and Tropical Medicine Biobank

Jenny

Senior Member
Messages
1,388
Location
Dorset
I saw my immunologist at the Royal Free Hospital today. He invited me to contribute blood samples for a project looking for bio-markers in ME. It's likely to start in about 6 months time.

I assume it's this:

http://www.lshtm.ac.uk/eph/nphir/research/cfs-me/index.html

(Could be something entirely different, but he did mention UCL as a collaborator.)

I suggested including an assessment of Mannose Binding Lectin deficiency, since I and others seem to have this, and he replied that they would look into it.

Sounds promising, but I hope they're building on all the previous attempts to develop a biomarker.

Jenny
 

Enid

Senior Member
Messages
3,309
Location
UK
Sounds very promising indeed Jenny - thanks for posting. (Bit hopeful approaching GP's for any ME numbers - doubtful if it is getting diagnosed still in too many parts).
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thanks Jenny - interesting stuff and looks like they might actually get somehwere in the uk with finding immune abnoramlities etc, which we can hopefully wave in front of our GP's.
Meanwhile in Wales we have no dedicated services whatsoever - ive only ever seen a GP and thats a handful of times.
Looking forward to better times, Justy