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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Remember Michelle Akers?

Ayaju

Senior Member
Messages
160
Location
San Diego, CA
She led the US Women's Soccer team to victory in the 90s; she collapsed on the field; she had CFS.... she could have been the CFS community's Michael J. Fox, I suppose; so could Laura Hillenbrand, the author of Seabiscuit. Anyway, I just saw Michelle Akers on Katie and she looks glowingly healthy. She was helping to promote a movie, I think, about women's sports. I was hoping against hope that she'd mention CFS; she didn't. I googled her and all I could find was that she's coming back to soccer, but the article didn't even mention her health at all. I found an old article saying that she had Epstein Barr... which the article called Chronic Fatigue Syndrome! Maybe that's it then; she never had CFS? I'm happy for anyone who recovers from any chronic health thing, but I admit I'm a bit disappointed she is not going to be a voice for us, and that she isn't a source to share how she got well.

Judy
 

Hugocfs

Senior Member
Messages
121
Location
U.S.A.
Almost no one wants their name associated with this crap disease. I know when I get over it that I won't go around telling anyone that I had chronic fatigue syndrome. Sad to say, but you might be waiting a long time for a high profile advocate for chronic fatigue syndrome to emerge.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I dont think we can ever expect sports people to go around much and tell people how they had this illness if they recover. They have to get picked for teams or whatever, things which could impact them if they consistantly went arouind telling everyone how sick they were. They more then any of us would need to get across how well and in good health they are (not to be telling people they had a mystery illness which could hit them again at any time). It just isnt in the best interest for their careers.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I remember that they publicly ridiculed Akers when she first got sick and told the media that she had CFS. I think that's in the movie, I REMEMBER ME.

I rarely tell people I have ME/CFS unless I know them well. I've had too many mean and condescending comments come my way about it. I may mention that I have an immune disorder or a neuro-immune disease, but I never say I have ME/CFS.
 

Ayaju

Senior Member
Messages
160
Location
San Diego, CA
I avoid telling people too because I'm so done with rejection! But I hope to be a spokesperson one day.

I'm surprised to hear people still calling CFS an immune disorder when it's been proven to be an enterovirus?
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I avoid telling people too because I'm so done with rejection! But I hope to be a spokesperson one day

Yes it is hard for peeps in the public eye ;

Australian footballer Alistair Lynch wrote a book about his illness/career and says anytime he mentioned it in the media he was inundated with requests for info and etc. so it is a lot to ask anyone who is ill to take on when they may be struggling to manage life anyway.


Ally
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I'm surprised to hear people still calling CFS an immune disorder when it's been proven to be an enterovirus?

I don't think it has been proven to be any kind of virus, and there is good evidence for it being autoimmune in at least some cases. There may be viruses involved in some cases too, but finding the presence of something doesn't necessarily mean that it is the cause. It can sometimes mean that an illness makes it harder to clear infections. For example, people with HIV are more likely to suffer from a range of infections than those without, due to impaired immunity.
 

Ayaju

Senior Member
Messages
160
Location
San Diego, CA
I'm basing this on what Dr. John Chia told me, and his articles on the Internet. His research, plus similar prior research in the UK identified CFS as an enterovirus that lives deep and hidden in the stomach wall. He said CFS is absolutely not an autoimmune disease. But the CDC doesn't recognize this yet. In fact, as can only be expected from the CDC they basically shun him. I believe him. I'd like to help spread the word.

He mostly doesn't prescribe Equilibrant (Chinese herbs) to his patients that have autoimmune diseases... that's why the jury is still out on whether I should take it, as I have Hashimotos and possibly RA.

What do you think?

Judy
 

Ayaju

Senior Member
Messages
160
Location
San Diego, CA
Fascinating! It sounds like doing a methylation protocol in conjunction with taking the herbs to kill off the enterovirus would be productive. (see part 3 of the video).

Caledonia, have you taking the methylation lab tests?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I'm basing this on what Dr. John Chia told me, and his articles on the Internet. His research, plus similar prior research in the UK identified CFS as an enterovirus that lives deep and hidden in the stomach wall.
Does Dr. Chia have a theory on how people acquire this enterovirus? Most particularly, could it come from food? I have wondered if the dinner I ate the evening before I got the initial 'flu' that started all of this was the cause.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I've not heard of the uk research, have you any idea who it was?
I was also under the impression that the work of Elaine de Fritas which got hushed up and locked away showed an electron micrograph of a retrovirus in a mitochondrion.
I'm not at all convinced it's gut-related, and I am also of the impression that "leaky gut" is just a theory, it's not something which has been proven to exist.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I've not heard of the uk research, have you any idea who it was?
I was also under the impression that the work of Elaine de Fritas which got hushed up and locked away showed an electron micrograph of a retrovirus in a mitochondrion.
I'm not at all convinced it's gut-related, and I am also of the impression that "leaky gut" is just a theory, it's not something which has been proven to exist.

I am of the impression that it has. See here for example:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/

and here is a paper relating intestinal permeability, and autoimmunity, to ME/CFS:

http://integrativehealthconnection....1/Leaky-gut-in-CFS-treatment-of-leaky-gut.pdf
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I think we were at cross purposes, MeSci, it was the comment from Judy I was asking about.

"I'm basing this on what Dr. John Chia told me, and his articles on the Internet. His research, plus similar prior research in the UK identified CFS as an enterovirus that lives deep and hidden in the stomach wall. He said CFS is absolutely not an autoimmune disease."

the "similar prior research in the uk" was what interested me.

I did find this on a general search - which seems to confirm that leaky gut isn't something mainstream or taught in medschool, or is even something very much is known about.
Not a chance of getting something like that investigated here!

http://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome