As a patient support charity The MEA is doing our best to educate GPs about ME/CFS
Over 3,000 copies of the new MEA purple booklet have been sent out to GPs since publication in May and the feedback from doctors is very positive - see comments below from our Facebook page today
I have met with officials at the RCGP to try and improve the situation
At a political level we form part of the Secretariat to the APPG on ME - who have produced a major and at times very critical report on NHS Services and medical education. Is your MP a member of the APPG on ME? If not, could you arrange a meeting to let him/her know the issues? They are all there in the APPG report. And also get him/her to join the APPG.
On a personal level have you asked your GP for a referral to your local hospital based service?
Contact details for all the UK hospital based services for ME/CFS are on the MEA website:
The MEA purple booklet campaign – 'Telling GPS the Truth about ME' - pushed all the right buttons.
Three thousand copies of the booklet were mailed out to GPs and other medical and healthcare professionals – with many patients following up by hand-delivering copies to their own...See more
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ME Association http://www.meassociation.org.uk/?p=4038
Available now – 2013 edition of the ME Association’s clinical practice booklet
The latest – May 2013 – edition of our clinical guidance booklet by MEA medical ...See more
2 hours ago · Like
ME Association We received this lovely endorsement for the campaign last week - from someone who asked for it to be sent to her doctor:
" It's a quarter of a century now since my family was struck down with ME and in all that time we have never had a single medical personnel who supported us (when it came to ME) or acknowledged our illness as anything other than psychological, apart from a consultant who diagnosed us in 1991
"After the experience I wrote about below we eventually did find another GP and he has been helping us and was kind enough to give us extra time at appointments and so on because my daughter is so ill. However we were not sure about his thoughts on ME and as usual dare not mention its name.
"At my daughters last appointment we went in, sat down and the doctor said "have you seen this, someone gave it to me", where upon he rummaged below his desk and triumphantly produced a well thumbed copy of the latest purple book, well! we were totally gobsmacked and delighted all at once but riveted to our seats,we just couldn't take it in or respond. He asked if we had seen it before but we didn't let on that we had been instrumental in a copy being sent to the surgery. He happily proceeded to look through the book to check up on medications he was about to prescribe to my daughter, totally unaware of the momentous occasion it was for us. He mentioned that there were interesting new treatments being investigated but he wasn't able to prescribe them at present.
"He opened the door for us to work together and talk about ME symptoms and possible treatments for the first time ever in our experience, and of course it will not be lost on any other ME patients he may have.He had obviously never seen the book before, I think is a wonderful success for the 'Telling GP's The Truth Campaign' I can only thank you so much and I hope there are many more little successes like ours out there. "
2 hours ago · Like · 12