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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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An advocacy piece written by Sophie


Senior Member

Sophie Cooklyn
Severe to very severe M.E. is NOT ‘just’ M.E. and it
MUST be treated differently!

I have very severe M.E.Which is a whole new level of suffering than those with mild and moderate!I believe that there are stages to this disease just like that of cancer!I have had each degree of severity and know it is much worse in comparison

This is an advocacy piece written by Sophie, a severe sufferer, to highlight the reality of the more severe form of the illness.

Unfortunately, I can't paste a reasonable extract as it doesn't copy and paste well, which is unfortunate, as she has some good photos I would have liked to show you, so you will have to go to the lnk. If only magazines and papers would use Sophia's depiction of life as it really is for a sufferer instead of the exquisitively made-up models delicately swooning at their work desk, a ploy which misleads their readers into assuming this devastating disease is just a case of fatique.

I think Sophie may be a member here, and she deserves recognition for the effort it must have taken to create this educational poster.

If you are reading this, I hope your situation improves soon, Sophie. ;)