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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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Document I created for use to help PWME get accurate info out.


Rebel without a biscuit
This information package is for people with ME and their advocates. Mostly it is for people new to ME who want to find relevant accurate information about ME to share with and educate family/friends/co-workers/PCP’s/GP’s.

The information could also be used to share with the media.

The information is deliberately restrictive in nature. It’s quite selective as an overview and is not meant to be comprehensive. I put this together in the belief that more is not better and that only a biological approach to ME would be considered valid for inclusion into the document.

Despite the restriction there is a lot here for people to explore. Despite the near complete lack of interest from most of medicine there is enough good information and promising lines of biological inquiry to not have to include anything that is connected to dodgy ideas regarding this disease.

Kudos, hugs, blessings and much gratitude to those few Dr.’s and researchers, who pressed on with studying, sharing their expertise and treating ME patients seriously knowing they were embedded in a political climate that whatever the status quo might deny was made difficult in the extreme due to their bias.



  • Useful ME info.pdf
    200.3 KB · Views: 200


Rebel without a biscuit
@AndyPandy @Snookum96 @picante and others

Thanks for having a look. And I hope it ultimately proves useful for someone.

Please, if anyone finds any errors of fact I'd be grateful to hear.

Also, I'm hoping to put together tow other documents eventually--one a sort of greatest hits of videos on ME (there are way too many to compile them all but I'd like to hit the highlights on a variety of topics.

And just because I'm me I would like to create a document on ME, the PACE Trial and CBT/GET including documents on problems with evidence based medicine and documents on evaluating scientific research.


Senior Member
Ontario, Canada

That's fantastic! people learn in different ways. My mom for example would love the document you put together as she likes to read the research, but my husband learns better from watching videos. It would be great to have different types of resources to share!

I'm not doing too good cognitively right now but if you're looking for some help in putting the other documents together I'd be happy to do what I can to help.