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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Next Podcast: Amy Proal, Anna Brooks, Fereshteh Jahaniani

GlassCannonLife

Senior Member
Messages
819
I guess my question would be,

Is there any way for the more prominent clinicians in the field to establish some type of task force or group where they share ideas and work together to push for advocacy? Would they be willing to look into something like this, or potentially try and push the media (eg 60 minutes or some prominent programs) to run a proper detailed story on ME to try and get more interest and funding in the illness? It seems that we are very under-funded in general and a media push might be useful.
 

sometexan84

Senior Member
Messages
1,235
Oh! I’m sorry I’m doing this! I hope you all can forgive me that I speak with her!
haha, we can just ignore any naysaying. As crazy and weird as negative comments like this may be, we should all be a bit used to it now. Try not to read into it....

Anyway... here are the references that go w/ my questions.... hope this helps. Good work boy!!

Amy Proal Q #1: https://forums.phoenixrising.me/thr...rooks-fereshteh-jahaniani.87135/#post-2390737

Her interview w/ Dr Chia -

Dysbiosis and gut virus in ME/CFS - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5843715/

Anna Brooks Q #1: https://forums.phoenixrising.me/thr...brooks-fereshteh-jahaniani.87135/post-2390740

ME-pedia comorbid autoimmune pg - https://me-pedia.org/wiki/Comorbidities_of_Myalgic_Encephalomyelitis

The 2021 Entero Theory paper - https://www.frontiersin.org/articles/10.3389/fmed.2021.688486/full

Dysfunction of Th17 cells in ME/CFS - https://www.biorxiv.org/content/10.1101/2019.12.23.887505v1.full

Enterovirus removing subset of Tregs, significantly decreasing FOXP3 expression - https://www.frontiersin.org/articles/10.3389/fimmu.2020.567046/full

Amy Proal Q #2: https://forums.phoenixrising.me/thr...brooks-fereshteh-jahaniani.87135/post-2390743

Ileocecal Crohn's Disease, CVB - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3696939/

Fereshteh Jahaniani Q #1: https://forums.phoenixrising.me/thr...brooks-fereshteh-jahaniani.87135/post-2390745

Health Rising article, possible MCAS and ME/CFS connection - https://www.healthrising.org/blog/2...on-ibs-fibromyaglia-chronic-fatigue-syndrome/

Mast cells theorized as cause of LC - https://www.ijidonline.com/article/S1201-9712(21)00751-7/fulltext

PAF influencing ENS - https://pubmed.ncbi.nlm.nih.gov/17030900/

Lactobacillus acidophilus alleviates PAF - https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0075664

Fereshteh Jahaniani Q #2: https://forums.phoenixrising.me/thr...brooks-fereshteh-jahaniani.87135/post-2390746

SARS-CoV-2 extracellular vesicles - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8100059/

Phosphatidylserine, role in COVID thromboinflammation - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC7817455/

Phosphatidylserine vesicle transmission in entero - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6704014/

Anna Brooks Q #2: https://forums.phoenixrising.me/thr...brooks-fereshteh-jahaniani.87135/post-2390747

Increased CD5+, CD19+, CD20+, CD21+ B cells - https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/616908
https://pubmed.ncbi.nlm.nih.gov/1902321/
https://journals.asm.org/doi/abs/10.1128/jcm.28.6.1403-1410.1990
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4837232/

Increased CD26 - https://www.frontiersin.org/articles/10.3389/fimmu.2021.644548/full
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0010817
https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1365-2249.2005.02935.x

Decreased CD56 subset (NK cell function) - https://www.jimmunol.org/content/139/10/3306
https://pubmed.ncbi.nlm.nih.gov/1849315/
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/616908
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-3083.1994.tb03511.x
https://pubmed.ncbi.nlm.nih.gov/17693977/
https://europepmc.org/article/med/21585130
https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-9-81
https://link.springer.com/article/10.1186/1479-5876-10-88
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
I think this here is very important and a point I always come up with and why I criticise most ME/CFS research. Focus on what Fereshteh says at 11:50 with the elephant in the dark room and then precisely with the finding and studying one chemical without noticing that it’s a downstream effect and not the cause and missing the whole thing.
I tell you: I always liked her but she is so to the point here… it’s a quality I often miss with researchers
Fereshteh is just brilliant. We should make her more visible and donate precisely to her research (you can do that when you donate to OMF).
I’m so excited to bring up this point with the ladies in the next podcast
https://open.spotify.com/episode/25SnwmPNOcSRyduKZ16zIH?si=HcYVuLyzQUecv-eGKHwn_Q
 

sometexan84

Senior Member
Messages
1,235
I think this here is very important and a point I always come up with and why I criticise most ME/CFS research. Focus on what Fereshteh says at 11:50 with the elephant in the dark room and then precisely with the finding and studying one chemical without noticing that it’s a downstream effect and not the cause and missing the whole thing.
I tell you: I always liked her but she is so to the point here… it’s a quality I often miss with researchers
Fereshteh is just brilliant. We should make her more visible and donate precisely to her research (you can do that when you donate to OMF).
I’m so excited to bring up this point with the ladies in the next podcast
https://open.spotify.com/episode/25SnwmPNOcSRyduKZ16zIH?si=HcYVuLyzQUecv-eGKHwn_Q
Oh man, I missed that during my 1st listen. Yes, I 10,000% AGREE!!!!

To others: She's talking about ME/CFS w/ abnormal levels of dopamine and other chemicals.... and researchers putting too much focus on treating something like this, w/out giving a lot of thought to whether or not it's actually a secondary effect.

I think it's also like this w/ many of the auto-antibodies we find. I think EBV reactivation is another one of these secondary effects that's been misrepresented in research as a "cause". Lots of examples....