New Here - Looking for List of Bloodwork incl Cytokines
My gene expression blood results have always been off for a variety of interleukins and cytokines. They were done at Galkina labs in Bournemouth. This was pre sarc diagnosis. My impression is that testing in the NHS is very limited.
I agree off label use could be less helpful for the community vs a clinical trial, but, why isn't there a clinical trial? I am not waiting for one. It has been discussed for at least 7 years. I am asking sincerely. Why hasn't there been a trial?
It's maddening to people who have been chronically ill for decades. They've lost half their lives. Why is it so difficult to find subgroups within ME and conduct trials on treatment (not exercise)? Why can we do it for LC but not ME?
How much would it cost to conduct a clinical trial of 50 patients with a subset of ME for 6 months of Rinvoq? Will Abbvie give the medication for free or discounted?
Thank you! I will take a look at it.
Thank you. I think it was the REVERSE LC trial that I tried to get het in. I'm pretty sure it was the one at Emory. Their exclusion for participation states that ME will not automatically bar someone because they understand many LC patients have ME. However, my sister got ME decades before LC and had very severe ME prior to LC so she didn't fit within the group they were trying to study, which I understand.
I will definitely be interested in the results.
What cytokine bloodwork would you typically have done?
MrMagoo
Senior Member (Voting Rights)
A few million at least
Jonathan Edwards
Senior Member (Voting Rights)
We have talked about this a lot.
For a lot of drug options I think that people already have a background of evidence indicating that the drug is almost certainly not going to do much. For Rinvoq there probably isn't much clinical experience to go on but a negative would be that studies of cytokines in ME/CFS have tended to show nothing consistent. I note that you had high measurements of 2 cytokines out of maybe 25. Being devil's advocate I would say that even in a reliable lab that is consistent with statistical random noise - you would expect one or two to be outside the 2 standard deviation range. In a less reliable lab - and for cytokines most of the labs offering tests are likely to be less reliable - you are pretty much guaranteed to get a couple of abnormal results (it keeps customers happy). Researchers familiar with what Rinvoq can achieve may rightly have thought that ME/CFS is not a promising target.
But for Rinvoq that analysis may be misplaced. Clinicians and researchers may just be sleeping on the job. Looking at the level of analysis in the papers we review and the pronouncements on X one wonders whether anyone in the research community knows what they are doing. Even the LC trials I have seen have been half-baked. How you get intelligent people to take an interest in doing decent ME/CFS clinical research I don't know, but some of us are trying.
When you talk of subsets you are presumably meaning selecting cases with raised levels of cytokines relevant to the drug? That is easy enough to do but studies we have seen would suggest that there would not be many candidates with raised levels.
The politics and bureaucracy of clinical research are dire. In the UK at least the problem is compounded by there being no physicians interested in ME/CFS any more. In the US making money seems to take precedence so the physicians who could do trials just go on treating off label. So no progress is made.
I have had gene expression for TNF alpha Ifn gamma, various interleukins 4 5 6 10 17 and as I remember 12. Very little normality on my readings and serve to build a picture which can cast light on other findings.