Tweets from the 2023 Invest in ME Conference, Cambridge UK


Senior Member
I followed the tweets of two posters at the IiME conference today and copied them into one document so am sharing them here in case anyone finds them useful.
Some tweets are duplicated, and, on occasions, the posters didn't name the speaker but I think I have allocated them correctly.
A couple of times, I also added the thread rolls as well as the list of tweets so I hope it won't be confusing.
I have turned it into 47- page pdf.
I am too brain-dead now to check it but I think it is readable.


  • ME LC TWEETS FROM IiME Conference 2nd June 2023.pdf
    749.6 KB · Views: 47


Senior Member
Thread on Prof Davies' talk

Is he saying that 25% of ME patients also have MS?

#IIMEC15 Ron Davis

He's wearing all black, because it's the "uniform of #MECFS". @DafoeWhitney doesn't do well with color, so he's used to wearing black
How do you determine the molecular cause of #MECFS & #LongCOVID?

and how do you treat it?
What happens just before start of #MECFS?

1. viral
2. bacterial or parasite
3. auto accident
4. childbirth
5. vaccination
6. surgery
He thinks innate immunity is the problem and what we should be looking at.

Those initiators also can cause major changes in the microbiome.

Can an altered microbiome cause #MECFS?
When Whitney couldn't eat anymore. Started TPN, conducted metabolic analysis that showed NO metabolites produced by microbiome. There was no change in #MECFS symptoms. After 1.5 yrs installed J tube to feed gut, metabolites changed, no change in symptoms
"The microbiome could cause some symptoms for some patients, but I don't think it causes #MECFS"
Do patients have MS or #MECFS?

Myelin Basic Protein (MBP) digest by catalytic antibiotics from ME and HC

It appears that about 25% of patients have both

Low Dose Abilify

Study by Laurel Crosby - 75% responders, but not double blind. 3 grant applications in now to do double-blind

LDA is thought to increase dopamine
BH4 is required for several metabolic enzymes

Both serotonin and dopamine require BH4

Another reaction might be even more important - arginine to citrulline and generates NO
They will be looking more at BH4. Have to stabilize within 5 minutes.

Patients are usually low in iron, manganese, and copper. Those metals get in cells via transporter DMT1, which doesn't work without NO (that requires BH4)
mutations found that can make symptoms worse (not in coding regions)
Search for a pathogen associated with #MECFS
didn't find any new or known pathogens, was very sensitive search for known DNA viruses (same as HC), very sensitive search for parasite - didn't find, very sensitive search for known RNA viruses - developed new methods
20 DNA virus panel - 82% of COVID patients in ICU have an activated virus, mostly EBV
Metabolic trap

when tryptophan gets too high, limits IDO1, can't make kynurenine (substrate inhibition)

The have found several FDA approved drugs that reverse the trap.
Looking at concentration, trying to figure out how to safely give patients those drugs

Low iron can amplify the trap
ATP production

upon infection, IFN alpha is produced and initiates the itaconate pathway in most every cell

itaconate pathway is in mitochondria and decreases ATP production
"I'm optimistic...we're posed for a breakthrough. I think this disease is curable."

"I've talked to patients who have spontaneously gotten over it after being sick for years"
Videos from the conference is up on youtube. Bergquist shows early evidence from a new metabolomics study that finds increased phenylananine and hypoxanthine in mecfs. Also finds high lactate levels in some bicycle test with very low exertion. Maureen Hanson presents arguments and evidence for T-cell exhaustion and persistent virus.
This presentation from Systrom is really good, he says he never had a mecfs/LC patient that didnt have preload failure.