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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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Civilising CFS

A thousand years ago, sick people were thought to be bearing the results of their sins, invaded by evil spirits, and other such gobbledegook. Sound familiar?

Until recently lepers were shunned, feared and driven out of society.

Two hundred years ago most diseases were treated by bleeding with lancets and leeches, poisons like mercury and arsenic, the black draught and the blue pill.

One hundred years ago, more people died of Spanish Flu than in the trenches. Polio, scarlet fever, an almost endless list existed of incurable illnesses, and some weird and wonderful treatments were used to little or no avail. Sound familiar?

Fifty years ago, medical science with its antibiotics seem to be able to cure all disease.

Thirty years ago AIDs hospices in Europe and North America were full of people dying painfully, dehydrated and with pain that made their skin scream at the gentlest touch. I know, it was my job to care for some. Mouths full of thrush. There was no treatment to halt the progression. Sound familiar?

Global understanding of HIV/AIDs was not a reality in 1990; understanding of our illness is not yet a reality, but it's coming: Progress, halting, limited, frustrating, is being made.

It's scary sometimes to try and get your father, sister, mother, boss to understand that you are just ill, FFS, and unlucky, but every person you help to that understanding is one person closer to civilising CFS.

All we want is recognition, respect, acceptance, practical help and drugs that really work. Too much to ask? Every illness, once finally understood, has that much, here in the west at least. It is a long road, but be sure, we will get there. Stay positive, breathe free, have faith.

Love from Jace x

Comments

Until they change the name, I don't think we'll see it. The name implies that it's just a disease of being tired. It has to go.
 
Well said, Jace,

Respect, acceptance & practical help are probably near the top of many members lists of wants.

Looking forward to more of your writing......
 

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jace
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