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If there is no real evidence that hypermobility EDS is a valid diagnosis, which I accept there doesn't appear to be, I can't help wondering why charities and some doctors are allowed to promote so much misinformation about it?

I think having achievable goals for each day no matter how small is helpful and also somethi g positive to aim for in the longer term if health improves, and most importantly feeling safe, maybe having some kind of authority with ME expertise that sufferers can approach to intervene if thry are...