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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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UK/US/Canada/Australia ME and/or CFS Campaign Discussion Question

Messages
25
Open for discussion:

The CDC, the NHS, the MRC and other government bodies are running rings around us so long as they continue to manipulate the definition of ME and/or CFS.

We need a campaign to require them to accept the Canadian Consensus Criteria (http://www.cfids-cab.org/MESA/ccpccd.pdf) as THE definition of ME ("CFS"). If we have agreement on which definition is the required standard throughout all medical and research practice in the UK, the US, Canada and Australia (and other countries), then what name they give it is less important.

- unglamorous, but until we have a government accepted and approved definition of the illness that applies across the board, all our campaigns for more research funds, training of doctors, and more recognition of the disease are weakened by the definition problem. What do you think?


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