Yea firstly I think
@deleder2k explained the outcome of the rituximab trial very well. Rituximab wipes out antibody producing cd20 b-cells. As deleder2k said a trial like this will fail unless a high percentage of participants have a b-cell autoantibody disease. I.e. you could have a low level of b-cell autoantibody disease and a failed rituximab trial. In fact the answer with rituximab is to find auto-antibodies which cause the disease and then treat only those people e.g. with rituximab. The current auto-antibody tests are very poor i.e. false positives/negatives Ron Davis has proposed a way to improve them [
https://www.omf.ngo/2018/02/12/tweak-assay-bolster-disease-detection-stanford-medicine-news-center/].
The separate study I referred to is a small scale study which indicates that you can diagnose ME/CFS using blood cells i.e. you measure an amino acid (phenylalanine) in the blood cells. High phenylalanine in your blood cells means means that you are using amino acids (e.g. phenylalanine) to produce energy (ATP) rather than glucose. This appears to result in the low energy state i.e. you get less ATP when you switch to this mode.
In effect this study may be a way of separating people with chronic fatigue:
- who have this change in cellular energy production (to using amino acids). This study found that 98% had switched to using amino acids;
- from those who do not have this change in cellular energy production (still using glucose). This study found that 2% had not switched to using amino acids.
If you look at the 2% then they could have anything e.g. a known b-cell autoantibody disease which responds to rituximab. To repeat, deleder2k said the rituximab trial will fail if there are a very low percentage of people with a b-cell autoantibody disease. I assume that the 2% estimate is based on a well controlled patient group. If you roll the test out, e.g. to everyone who presents at the local doctors surgery with chonic fatigue, then the percentage will be much higher.
It's a big day e.g. Phair is speaking (I assume) and he's looking at this cellular energy stuff.
As well as talking to each other on this site; why don't we try to talk to those who can actually fund the development of diagnostic tests/treatments etc - i.e. make a difference?
The European Union [EU] Committee on the Environment, Public Health and Food Safety (ENVI) are currently lobbying for increased funding for Lyme disease. The EU has already funded the development of a diagnostic test for Lyme disease i.e. 2 million euros/dollars. ME/CFS has received no EU funding. I've asked the Committee to lobby for funding for the development of a blood based diagnostic test for ME/CFS. See above, there appears to be a viable test available but we need validation studies. Here's a blog/thread on this site that I've been using [
https://forums.phoenixrising.me/ind...ch-theyre-working-for-you.61516/#post-1001161].
Try to influence those who can fund studies to develop diagnostic tests, treatments etc. E.g. European Union through elected members [members of the European Parliament] or the Senate/Representatives in USA.