• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is there an NHS-recognised test for NK cell function?

Sasha

Fine, thank you
Messages
17,863
Location
UK
Given the findings that PWME have problems with NK cell function, I'm wondering if there's a test available on the NHS or if this is one of those areas where researchers are using one set of tests and taking them seriously while the NHS in its clinics regard them as fringe or unreliable.

My impression is that even the researchers, over the years, have had conflicting results and I have a vague memory of Dr Klimas saying that this was because until fairly recently, tests hadn't been reliable.
 

mermaid

Senior Member
Messages
714
Location
UK
I looked this up quite recently by googling as I too wondered about it, but I could only see it mentioned in the UK in relation to fertility/miscarriage issues. It was on those kinds of forums where apparently it is thought to cause issues for some people in pregnancy, but I expect you found this too. There is a petition going on related to this.

I think even then it's hard for people to get done on the NHS but I did find this link where it talks about the test...
http://www.lwh.nhs.uk/Library/our_services/fertility/Fertility_leaflets/Natural_Killer_Leaflet.pdf

Actually I have just done another google and found it listed on the tests of this hospital - you need to scroll down to NK - looks like it's done for leukaemia
http://www.nhspathology.fph.nhs.uk/Core-Service/Test-Directory/Haematology/ReferralLabs.aspx

But for those of us with ME/CFS in the UK? Well if it's not in the NICE guidelines - forget it.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've not had any of my private NK cell tests recognised or taken seriously by an NHS doctor or consultant. That includes an Infectious Diseases consultant, a Neurologist or a Immunologist. They have all regarded this as being experimental. Never had any comments about being unreliable but the feeling was that they could not read the tests or knew the labs that they were produced by (i.e. not in the UK) so dubious.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Mermaid, thanks for posting that. I had some correspondence with my PCT (when it was Westminster) about 3 years ago and I specifically asked them about useful immune related tests. They told me categorically that none of the ones on my list (and it included NK testing) was done through any NHS lab that they had a contract with. I was assuming that was London wide. Maybe they didn't know about the Leukemia one that was in your list or it is new.

The recurrent miscarriage groups also have difficultly with their own private NK tests being taken seriously by the NHS. Although there is research at Liverpool Women's other NHS clinics (like the one I was seen at) completely disagree with this and will not take it seriously (even with tests).
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Interesting - sounds partly like a breakdown between research and clinical practice, even in these areas.