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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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Patients included.


Patient in training
Patient engagement is running strong these days. Patients now participate in assessing research and in making their own decisions for their health. Those who are well enough attend the yearly Invest in ME conferences or the biennal IACFSME conferences (and I am not pointing fingers) however they are guests, and I may be wrong about this, they are not invited as guest speakers.

And then I found this: http://patientsincluded.org. A movement trying to change that. Including the patients at the conferences, as guest speakers and as attendees. While most of this applies for the big conferences which typycally gathers thousands of people, and generates revenues high enoughh to pay their guestspeakers, in my opinion it would be nice for our own organizations to proudly use the logo "Patients Included" for their incoming conferences, because they have gone above and beyond to include the patient voices amongst the scientists and the physicians who are treating these diseases.

'Nothing about me, without me' needs to apply everywhere. In health care, in health policy, at government level, or government agencies, everywhere. No ifs, no buts. Patients included.



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