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"No help for Myalgic Encephalomyelitis (ME)patients"

About: Health and Social Care Northern Ireland

(as a service user),

From my experiences I feel that there is no help for Myalgic Encephalomyelitis (ME)patients in Northern Ireland

My daughter has been ill for 18 months . Numerous visits to various GPs and dismissed every time. If it was not for the help of the charity I don’t know where she would be. They were able to put us in contact with a consultant from England who diagnosed her with severe ME.

One Gp advised her to open her bedroom window in the morning and take a deep breath!This was a child who couldn’t go to school and was housebound.

I felt so alone, disbelieved , frantic to get my child some help and no one but the charity helped me .This should not be happening! 

More education is needed ,this needs to be compulsory and also given during training . The lack of knowledge is staggering and extremely worrying. 

Wrong advice is given regarding exercise which will only worsen the symptoms of an ME patient . This is dangerous but still the referrals are made to physio for graduated exercise. This has to stop !

My daughter has been on the urgent waiting list for Rheumatology for 9 months and still waiting!

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