Well done to Dr Enlander in speaking out for the ME community at the way ME sufferers are being treated here in Belfast and highlighting the true facts on ME.
Dr Derek Enlander who came to Belfast on May 4th and seen my son David.
Dr Enlander was a not only a gentleman but very understanding to David, and for the first time for David he did not have to repeatedly go over all his symptoms of ME.
As for continuing his care and supervising his patients from 3000 miles away, I have to say I have more contact with Dr Enlander over the Past 4 weeks than I have had from consultants and GPS here.
It is having the reassurance that when you face a new problem that Dr Enlander has contacted me in less than 24hrs fro 3000 miles away, and given me advice (sometimes as a mother and carer that is all I need).
As will his regime conflict with patient’s current NHS treatment, what treaments are they ,pills to help cope with the symptoms, therapies like graded exercise and cognitive behaviour therapy (come on now) when both these therapy’s have had very little benefit to ME sufferers.
Sophia Mirza’s refused the treatment of the CBT/GET clinic and was put into a mental institution. It took an appeal to a special tribunal to get her out.
Yes, I know, this sounds too horrible to be true. But this is happening in the UK today and forms the force behind the ‘controversy’ of ‘physical’ versus ‘mental’ argument in ME.
Dr Enlander is an ME specialist. Unlike the doctors here in Belfast
who have little or no experience of this condition, so how can they
hope to treat it. He is pursuing a cure for this illness at the
Mount Sinai Hospital in New York, as our Dr. Jonathan Kerr (ex
Belfast) at St. George's Hospital in London, and by Dr. Vance Spence
(ex Strabane) at Dundee University.
What hope is there when doctors in the hospital don’t even understand your ME.
In this day and age with all the medical information that is available to doctor, their ignorance still is extremely disheartening.
ME sufferers have had to suffer much more than the disabling symptoms of the illness itself: they also have to put up with the disbelief from the medical profession, and the only thing on offer is Psychiatry which is an insult to my son David and also to the 7000 other ME sufferers in Northern Ireland.
This shows how little people with ME are thought of and how ignorant the
medical profession as a whole is.
We are all in this together - ME sufferers, our treating practitioners, families and carers. Lets not be destructive of each other. As difficult as it is at times, it is time for the ME community to stop being competitive. What we all want is proper care and attitude to all ME sufferers.
It’s 2008 ME sufferers shouldn’t have to put up with 2nd class treatments, what we want is proper funding for proper treatments.
I think the DOH need to take a proper look at the funding for ME.
My priorities with regards to ME:
> Help my son live day to day and relieve the pain and suffering he
is enduring even as you read this.
> Raise awareness of the neurological disorder ME
> Raise money for Biomedical Research into ME (because the
government won't give any). PLEASE HELP!!!
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