18.40 Ron Davis and Janet Dafoe
20.10 Abilify - Ron is convinced that Abilify helps Whitney. OMF is putting a lot of effort into investigating Abilify and dopamine pathways. They are working with scientists and a person who set up a company.
(It wasn't clear to me if the company is Labcorp, or the person is helping to get Labcorp to set up the required testing.)
Patients will send samples to Labcorp (for diagnosis?). This is where their new effort is, and Ron seems very confident. He thinks it is related to decreased mitochondrial function, that it is a metabolism problem.
23.15 ME/CFS looks a lot like a persistent infection. OMF have already looked for infections, Lipkin has looked for infections - no one has found anything yet. They will look further - DNA or RNA from organisms - viruses, parasites, fungi and bacteria.
24.30 Tryptophan trap Ron says that the community have got confused, thinking that the tryptophan is in the serum, but it's actually the levels that are made in the immune cells that matter. In an infection, the tryptophan is released from the albumin which is then broken down to kynurunine. The enzyme that breaks down the tryptophan is IDO1, but if the level of tryptophan is too high, IDO1 doesn't work. In most people, they have another enzyme, IDO2, that works at high levels of tryptophan. But, if there is a mutation in IDO2 that makes it dysfunctional, high levels of tryptophan make a metabolic trap - there isn't a way to break down the tryptophan. Janet says that 70 patients have been tested for the IDO2 mutation and all but one (who is an 'unusual case') has the mutation.
(Has this been replicated by any other researcher? Surely it wouldn't be so hard to check this finding in other patient populations, and surely that is important to do? If it could be replicated, that would do a great deal for OMF's credibility.
There's an edit straight after Janet talks about the 70 patients, and suddenly the presenter is laughing and Ron is talking about tryptophan in yeast cells. So Ron doesn't confirm the finding of the mutation in all patients tested so far.)
There was some discussion about yeast cells that have been modified to have a functional human IDO1 and no other way of producing tryptophan, being used to screen drugs.
Ron thinks the tryptophan trap is the primary cause of ME/CFS. He thinks a drug fixing the trap could cure patients overnight.
33.40 Ron is asked what he would say to other researchers. Ron says that researchers should focus their efforts on what helps the patients, and not on publication.
(But surely if OMF paid for a genetic study of a well characterised cohort of ME/CFS patients, if it showed that there is a mutation with IDO2, then lots of researchers could turn their minds to fixing it?)
Janet says that they would also say to UK researchers to stop spending money on unhelpful treatments like the Lightning Process, CBT, or GET. And for scientists to tell UK clinicians to try saline drips or Abilify or other treatments for symptoms.
36.30 Impact on carers. Lack of knowledge of ME/CFS in the medical profession. Great burden on the family. It's hard when taking care of your loved one actually hurts them.
43.00 Message for the community. Ron continues to try to figure ME/CFS out and bring in other scientists. OMF is working with Mark Davis, an immunologist. Mark got the grant and OMF is providing the patients, and they are learning a lot about the immune system - unique cells and autoantibodies. Data that is collected is made available publicly for others to use. Janet says that they want everyone to have hope. Janet says she tries to 'instil hope by giving out information, and sometimes she calls people up just to help them out with the things she does know about'. She does have hope, even though it is slow. She suggests patients work on having gratitude for the things that we do have in our life that we appreciate, and be in the moment and find pieces of joy and try not to focus on the future or the past. She mentions Whitney's recent article in the Healthcare Journal.
Ron says that patients worry that they don't really have a disease, and shame means that the disease isn't mentioned (but there are very clear biological anomalies).
Ron mentions PANS - disease in children caused by a strep infection. He thinks it's very similar to ME/CFS. There's a PANS clinic in Stanford, Jennifer Frankovitch runs it. She says that if she can get the patients within a year, she can fix them with high steroid concentrations. Which makes Ron concerned that there is just a short time for fixing people with Long Covid. Janet says to people with Long Covid 'rest, don't go over your energy limits, don't listen to any doctor that prescribes energy, and it's not depression or anxiety'.
51.50 End of the section with Ron and Janet