Oct 23: Advances in Our Understanding of ME/CFS and the Impact of Long Covid

[Rebeccare]

Registration just opened today for this event! You can learn more and register here: https://sites.google.com/massmecfs.org/2021annualmeeting

It is a long event, but can check the schedule to see when each researcher is speaking, and then pop in and out based on your interests:

And you can send questions you'd like the researchers to address to annual21.question@massmecfs.org.

 

[wabi-sabi]

Registered!

 

[Rebeccare]

Cort just wrote a nice piece on this on Health Rising: https://www.healthrising.org/blog/2021/10/19/mass-nih-funded-chronic-fatigue-research-centers/

The event is tomorrow!

 

[Learner1]

Cort just wrote a nice piece on this on Health Rising: https://www.healthrising.org/blog/2021/10/19/mass-nih-funded-chronic-fatigue-research-centers/

The event is tomorrow!

Hi - do you know if it'll be recorded for future viewing?

 

[RL_sparky]

Hi - do you know if it'll be recorded for future viewing?

I was told it would be recorded for future viewing.

 

[Rebeccare]

Yes, it will be! I don't know if the videos will be released right away or if there will be a delay of a few weeks, though.

 

[jaybee00]

Bumping this—this is today.

 

[Pyrrhus]

Recording now available:

https://www.youtube.com/playlist?list=PLz31KwoUbYrEqidEmr-wCJzPI19hQMn_A

 

[GlassCannonLife]

Recording now available:

https://www.youtube.com/playlist?list=PLz31KwoUbYrEqidEmr-wCJzPI19hQMn_A

Have you watched any? If yes, does it seem worth the time/effort?

 

[Rebeccare]

Have you watched any? If yes, does it seem worth the time/effort?

If you have the energy to read you can skim this summary and see if you think you might want to hear the whole talk from any of the speakers: https://mecfsskeptic.com/massachusetts-me-cfs-conference/

 

[ljimbo423]

From the summary Rebeccare posted above-

Ian Lipkin

Dr. Ian Lipkin, the next speaker, agreed and said that he also saw sex-specific and age-specific differences in his results. Throughout the talk, he emphasized that ME/CFS is likely a very heterogeneous condition.

Much of Dr. Lipkin’s research focuses on the microbiology of ME/CFS. He has found, for example, that ME/CFS patients have more bacteria in their feces than healthy controls and that there are differences in the types of bacteria in the gut.

Butyrate-producing bacteria, for example, were decreased which, according to Dr. Lipkin, might provide a rationale for clinical trials of prebiotics or probiotics.


He also explained how his research team uses stressors in ME/CFS research because these might amplify abnormalities which makes them easier to detect.

One slide reported that ME/CFS patients displayed a heightened inflammatory response after exposure to extracts of Candida or bacteria. This response was higher in women and particularly in those older than 45.

 

[ljimbo423]

This quote is about EBV reactivation-

EBV reactivation

Somebody asked about Epstein Barr Virus (EBV) reactivation in ME/CFS patients. Dr. Hanson said that they tested this in 105 patients but didn’t find evidence of this.

Dr. Lipkin added that his team did PCR-testing but that there was no difference between patients and controls. Others stressed that even if there are signs of reactivation, it is difficult to determine if this is pathogenic or not.

Dr. Bateman, for example, said that reactivation is also found in astronauts after a space flight even if it doesn’t lead to disease.

 

[Learner1]

This quote is about EBV reactivation-

EBV causes several cancers and can trigger MS and many forms of autoimmunity. ME/CFS patients are not astronauts who are typically in excellent health.

The OMF meeting at Stanford discussed that EBV and other herpes viruses do have some significance in ME/CFS.

 

[Rebeccare]

I'm helping to fix up the captions for the videos, so I'm very slowly watching them and trying to understand!

Dr. Nath's talk was about the NIH Intramural Study of ME/CFS, in which 17 people with ME/CFS as well as healthy controls were studied in great depth. Here are three of the most interesting things I got out of Dr. Nath's talk (nothing terribly surprising, but still interesting)

• There are differences between people with ME/CFS and healthy controls during exercise testing that suggest metabolic inefficiency
• There are abnormalities in the mitochondrial function of people with ME/CFS after exercising
• There was surprisingly large difference between men and women found when immune dysfunction was analyzed (he didn't mention this during the talk, but when asked about the most surprising finding afterward this was his answer--I would be interested to hear more about this in the future)

 

[Rebeccare]

Dr. Lipkin's talk was also about differences between people with ME/CFS and healthy controls that he found after analyzing blood, saliva, and fecal samples.

Some interesting findings included:

• In spite of higher overall levels of gut bacteria in people with ME/CFS, there are low levels of butyrate-producing gut bacteria. Butyrate is anti-inflammatory, supports GI motility, and controls the intestinal barrier.
• There were increases in specific types of B-cells that would be seen in an infection or autoimmune phenomenon.
• There was increased citric acid in blood of ME/CFS patients after exercise, indicating problems with energy metabolism.

I was particularly interested in some of the ideas he had for future studies, including:

• Looking at whether prebiotics or probiotics would help increase butyrate-producing gut bacteria and improve symptoms
• Trying to identify if a subset of people have had difficult-to-pinpoint herpes viral infections and whether anti-virals may help them
• Using existing drugs, and perhaps genetic methods such as CRISPR, to modify abnormal metabolomic pathways

 

[RYO]

Has anyone heard whether Dr Nath’s group is close to publishing their findings in detail? I thought their goal was for the fall of 2021?