Thread by @OxMEDiscovery

Update from Oxford

We were blown away with the interest in our recent crowd funding campaign. Not only the financial support, but the comments and support for our research efforts. Getting funding for research is a challenge and you have to keep going back again and again,

making small tweaks to the proposal and refining your ideas. This can be tough and draining. Knowing people are out there backing us makes a massive difference!

New Initiatives: We have several new initiatives we will be starting soon.

This includes expanding our clinical research programme in our current #pwME, #LongCovid and #Lyme work, increasing the number of visits for each subject from 1 to 3. With 190 subjects in the study this means hiring more consulting space and buying more assay kits and reagents.

In #LongCovid we are planning some pilot studies of our Raman diagnostics using blood samples in collaboration with Oxford imaging groups and hope to start in January 2022. Our Cyro-therapy study with Pawel Zalewski is generating some interesting results
ncbi.nlm.nih.gov/pmc/articles/P…

We are looking to map the gut microbiome, measure gut permeability markers and run a metabolomics screen of plasma. Patients are showing short term benefit and we need to look at our emerging diagnostic markers to see if they change with symptom improvement.

PANS PANDAS @PandasPans is now well on our radar and we are looking to run a deep pathogen sequencing study on patients samples from a new UK clinic. These projects will need funding and we are planning to set up specific donations for each project on our University funding page

Getting the word out on these projects is really important. You can help! We have a nice paper just about to be submitted exploring a new diagnostic approach in Severe ME/CFS patients. I hope this will raise our profile with the general public and may generate media interest.

We really need to widen our net to get the support we need to get these projects going! With our podcasts starting in early 2022 hopefully we can raise our profile further. Lots to do!

It will take while to get this going, need to establish links with the PANS PANDAS clinic, obtain ethics (can take 4-6 months), source a partner to work with us on the whole genome deep sequencing and bring in the funding we need to run the project.