Jenny Horner Children who miss out on so much due to severe chronic illness should as an absolute minimum be able to rely on their paediatriclans for respect and understanding. Even if those doctors feel that they cannot yet explain their symptoms (which is contested anyway). Using such a derogatory term conveys instead a shocking disrespect for vulnerable patients.
Jenny Horner Patients with these conditions already had grave concerns about the agenda behind MUS/MUPS. Even this more neutral term communicates a worrying attitude from doctors. It seems like they are resigned to not understanding the cause of these symptoms, that they are unknowable (or even unreal). I have two of these conditions. When I have had the fortune to be the patient of more curious and supportive doctors symptoms which had been "unexplained" for years become explained by a relevant medical test! Years of "persistent, unexplained" dizziness and vertigo was caused by an inner ear lesion etc.
Jenny Horner To patients it seems odd that these conditions are even framed as unexplained. POTS is diagnosed with objective tests. The physiology of it is understood. There are treatments which alleviate symptoms. There are various underlying causes. Like most conditions it isn't completely understood but it doesn't fit a description of unexplained. EDS I don't know a lot about but it often runs in families and is associated with certain genetic mutations which cause a connective tissue disorder. ME has many pieces of the biological jigsaw already discovered but how they fit together is not yet certain, this isn't the same as unexplainable, more like the explanation is in-process.
Jenny Horner Patients already feared that the perspective of MUS wasn't in our best interests. The titling of this event confirmed some of our worse fears about the attitude of medics to our predicament. These conditions are highly disabling. Many of us are housebound or bedbound for years, abandoned by the medical establishment. It is unacceptable and must change! I will also be taking the issue further.
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