A useful questionnaire for people wit... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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A useful questionnaire for people with medically not yet explained symptoms

MaryF profile image
MaryFAdministrator
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This is for people who perhaps think they have Lupus or Hughes Syndrome/APS, but have not had a diagnosis, (medically not yet explained symptoms), I had a couple of relatives like this in my wider family, who had very similar symptoms to my own, which were eventually diagnosed!

The James Lind Alliance Priority Setting Partnership (PSP) for Medically Not Yet Explained Symptoms (MNYES) is currently running a survey to establish research priorities according to patients, carers and clinicians dealing with MNYES.

The initial question-gathering survey for this PSP opened in June 2020 and you are most welcome to fill in the survey at york.qualtrics.com/jfe/form...

It should be filled in by people with no formal diagnosis to explain their symptoms.

It can be filled in by people who think they may have Hughes or SLE.

MaryF

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MaryF
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lupus-support1 profile image
lupus-support1Administrator

Thanks Mary. Will repost to LUpus Patients Understanding & Support (LUPUS).

MaryF profile image
MaryFAdministrator in reply tolupus-support1

Thank you very much. MaryF

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