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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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Letters to your government or representative

K

keepontruckin

Senior Member
Messages
213
I just wrote a letter to my government asking why people with me/cfs are not included in the trials with people with long covid. It got me thinking. I used to include stats on the numbers of people suffering with the disease in the country. I do believe that they get it now. They know there is a large population. I think it is more effective now to focus on the suicide rate because I think that is not well known at all. The suicide rate is about 26.7%. Correct me if I am wrong. I heard a researcher explain that the incidence increases the longer the person has had the illness. I thing that is a better focus for appealing for inclusion with long covid people in trials. I think it is time to be included now.
 
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