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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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FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

boomer

Senior Member
Messages
143
There are other costs to the patient to. A person I know with cfs has a massage every week and sees an osteopath every week and also sees a physiotherapist every couple of weeks on an ongoing basis. This is not a luxury either - it's a necessity to deal with the pain and the tightened muscles. She sees a doctor almost every week over something- ear infections, yeast, headaches, sleep, depression, pain, etc. I swear we must have seen every type of doctor there is to try to figure out what is wrong. The costs to the patient are big.

i remember when I was growing up - you almost never heard of people having massages. Nowadays, they are everywhere and I wonder if the growing number of people with cfs and fibro have contributed to the demands.
 

Eric Johnson from I&I

Senior Member
Messages
337
Those numbers seem to make sense. They might be a little conservative. Or not. You can see that since our GDP is $13T, if 0.5% of the population were totally disabled by ME the loss is $65B per annum. But maybe a good deal fewer people than that are totally disabled.