What's up Docs? Where do we stand?

[Chfrazzle]

Hi everyone. I hope spring is bringing you a sigh of relief and some sunshine on your shoulders. It's been a long long year and I truly hope we can get back to some level of normality. I had taken a break from ME/CFS social media groups, Youtube, Pub Med, NIH, etc. in trying to stay informed. I am the caregiver of an adult child with ME/CFS. I felt I was spending too much time keeping up to date and neglecting my family and my own mental health. So easy to get stuck in the rut of reading news about ME/CFS that doesn't materialize or details of treatments that are not possible to utilize. But since I still feel the need to stay informed for the sake of my child I have gone back into research mode. Mainly motivated by fear, fear of missing something that might be helpful and secondly from my nerdy curiosity. I had been following OMF - Open Medicine Foundation fairly religiously . Seems they were the most energetic group, or at least most enthusiastically marketed. I do believe they met via video conferencing (Did they?) during COVID? I also checked in with Dr. Jarred Younger's neuroinflammation group at UAB. Nothing substantial from them for several years. Does anyone have any updates or info to report? Am I just not looking in the right places? I really feel with April here and it being the season for advocacy that we need to be hearing more from those doing research in ME/CFS. What can be done to propel those researching to reach out and provide us updates? Please post what you have heard or what you know. I think we could all use some news that may be inspiring or hopeful.

 

[Dom]

Studies are happening all the time. One of the best places to pickup the latest articles is PR probably:

DISCUSSION: Latest ME/CFS Research

This forum is for posting published research specific to ME/CFS. A suggested thread title format is: Title of Publication (First Author, Year), so for example: The Role of Enterovirus in Chronic Fatigue Syndrome (Chia, 2005).

forums.phoenixrising.me

You've also got Cort's latest articles on the HR front page.
Cort's latest tweet:

https://twitter.com/i/web/status/1378451667142631425

As for Davis, he's doing some genetics work currently I believe sifting through tons of data. His last video update is on the PR forum somewhere in the research threads.
https://forums.phoenixrising.me/thr...ron-davis-march-29th-2021.83381/#post-2330558 (March 29th 2021)

Naviaux is doing the Suramin studies for autism and then ME afterward:
His primary theory is CDR.

News and Events – Naviaux Lab

naviauxlab.ucsd.edu

Bhupesh Prusty can be found tweeting on twitter, but due to fund application restrictions he can only send certain updates to twitter now. So less than there used to be:

https://twitter.com/BhupeshPrusty

 

[Chfrazzle]

Thank you very much for the reply. I will read up on the links you provided. Do you know anything new about Dr. Robert Phair (Metabolic Trap) and his studies?

 

[Dom]

Heard of him but have never read up properly. Good reminder for me to actually do so ☺

ME Pedia is another fantastic resource: https://me-pedia.org/wiki/Metabolic_trap

I think Cort's latest write up might be the most up to date for Phair: https://www.omf.ngo/2018/10/19/heal...on-the-molecular-basis-of-me-cfs-at-stanford/

Based on the me-pedia page anyway.

 

[Chfrazzle]

Heard of him but have never read up properly. Good reminder for me to actually do so ☺

ME Pedia is another fantastic resource: https://me-pedia.org/wiki/Metabolic_trap

I think Cort's latest write up might be the most up to date for Phair: https://www.omf.ngo/2018/10/19/heal...on-the-molecular-basis-of-me-cfs-at-stanford/

Based on the me-pedia page anyway.

Thank you. I will check out ME pedia. I need to make an updated resource list. So many resources and avenues to keep track of. I know research takes time but I think it is defeating and a sad thing that they (researchers) get us hyped up with their enthusiasm and inspiration but then leave us wondering without any updates for too long. I'm not hopeful with Phair, seemed like a good theory, but maybe there is something smoldering that will rise up.

 

[Dom]

I do think a root cause like Phair's makes sense. Sadly I was sat on a NIH call at the end of March and whilst I was in reasonably good spirits to begin with it became clear they had no power to actually get anything funded, which sort of defeated the object. Lots of ME patients and campaigners were on the call, all very angry and annoyed, as you can imagine.

 

[Chfrazzle]

I do think a root cause like Phair's makes sense. Sadly I was sat on a NIH call at the end of March and whilst I was in reasonably good spirits to begin with it became clear they had no power to actually get anything funded, which sort of defeated the object. Lots of ME patients and campaigners were on the call, all very angry and annoyed, as you can imagine.

That is disappointing. I hope there was something positive that came out of the meeting.

 

[Apo Sci]

I think ME is intentionally not funded for several reasons.

1. Protection of the insurance industry. This was done in the 1980s where the NIH refused to fund ME research that didn't assert it was a mental disorder. SSA disability likewise took (and still takes) a very critical position against ME claims for disability with only 15,000 of the 2 million patients approved for disability despite 25% of ME patients being severly disabled. Rejection of these claims saves the US Government a lot of money in claims.
2. Depopulation. The US government engages in many depopulation strategies: approving GMO crops that contain high levels of glyphosate which is now known to dysrupt glycine chemistry in the body, harm essential gut bacteria (resulting in depression and increased deaths from coronavirus-19), subsidizing sugar and making sure that nutritional guidelines do not hurt the farm industry (cattle). This is so entrenched that junk food corporations make big donations to dietician programs and have buildings named after them (i.e. Nestle who makes baby formula and candy bars).

 

[JameDiagonal]

Wow, this is a very informational thread. Thank you for sharing all your thoughts.

 

[Dom]

Yep 1. is flagged as a biggy @Apo Sci