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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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I saw a commercial on television the other day for feline leukemia awareness week. Seriously. Let's see....when was the last time I saw an advertisement for ME/CFS Awareness Week? Like....never! And who, besides those who have ME/CFS, is aware there IS a ME/CFS Awareness Week?

Well, after all, people with ME/CFS (PWME) aren't able to do a lot of advocating for ME/CFS awareness...we need others to bring it to the attention of the general public as well as government and private agencies who fund research. Cats, who also find it difficult to tell people about their medical ailments, are one up on PWME. They have spokespeople...and advertising...and donors.

I'm not usually one to get riled over the politics and lack of research funding and awareness for ME/CFS. What good does it do to get angry at people who aren't even listening?

But this got to me. Not that I wish disease or death on any creature. However, when approximately 7 million people worldwide suffer from a disease that has no cure and which doctors say is more debilitating than AIDS or Multiple Sclerosis....both of which everyone has heard of...and their voices are only heard within their own on-line communities of fellow-sufferers...you bet I'm angry over an advertised cat disease! Since when do animals matter more than human beings?

When will someone with a platform and without ME/CFS, step forward to make the world of the well, aware of the need for research, compassion, and help for the millions of people....yes people!...with this life-robbing illness?


Other illnesses eg diabetes, heart issues, cancer.. all have their support orgs which advocate for them in this way.. eg ads on tv. Its our big orgs which are letting us down in this area.. or maybe we are letting ourselves down by not pushing our orgs to be doing more advocacy for us.

If you want to change this current situation, get in touch with your countries ME/CFS orgs and tell them what you want them to be doing. Dont just complain about the situation here, tell them to do more advocacy (of cause Im not refering to small support orgs run by volunteers).

Without good advocacy comes less donations for research etc.
That just makes me want to scratch someones eyes out!! I am starting to think it is gonna take every Govt member from every country to come down with this ... before anyone will listen. I am hoping I am wrong but it sure feels that ways sometimes.... Maybe we just need to start Meow...ing?? Hiss Hiss!!!
I'm glad you got my rant, Jacque. Love your sarcasm. If I believed there was anything I could do to change this, I would do it. Right now, I'm just trying to stay vertical some part of the day. And expressing a rant once-in-a-while to others who understand feels cathartic. I do agree with Tania, we should do what we can...and I do, when I can. Hey, maybe we can get a talking cat to be our spokesman. It could work. Meow!
I'm not as cute as a cat, unfortunately. Or a Snow Leopard. ;)

Tania - it is still a bit of a catch-22, where do the support orgs get the money for the marketing campaigns etc? These things can only build slowly, though I do still feel there has been a lack of leadership in many ways, for whatever reason.
I tell people ME/CFS doesn't get enough attention, funding, etc. because our illness just isn't "sexy" enough. Now, I don't mean sexy in the literal sense. Why do news agencies use the most graphic photos? Photos that make us react in disgust, outrage, despair - you name the provocation.... Graphic images provoke strong reactions. We just lack that outward stuff that makes people stop, look, and feel something abrupt. We, with our illness, are lackluster. Most of us have our hair, we are often normal weight, etc. One of our biggest gripes is when others say "how great" or "how well" we look.
Luckily, those "normals" who understand how disabling ME/CFS is, sympathize. (More or less).
As far as advocacy goes, I think we do what we can...given the obvious deterrents. For my part, I just try to explain things as best I can to "normals" who I encounter. Call it "grassroots", step by step. Baby steps.

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