ME & FM on going support Poor!!!

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johndigger
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by johndigger on Mon Aug 19, 2013 6:13 pm

ME & FM on going support Poor!!!

Once diagnosed with ME & FM, I was offered CBT and pacing, drugs to help with gut problems and low dose antidepressants to help with sleep and pain (which have helped). The on going advise and help from the NHS is non existent in my experience. As a non medical person, you can read as much as you like, but still find yourself in a hopeless position of not really knowing what to do. I myself find that I am slowly deteriorating; I try to remain as active as I can, but not enough to make me severely relapse. There is only so much you can do by yourself especially when your cognition is so impaired. I have tried many things recommended by so called experts; some of them have helped aspects of my condition. I feel that no one looks at the condition as a whole body condition and systematically, by them selves or with experts in different fields, help to make you as well as you could be. I feel that this is lack of clinical care and should be addressed but do not know who or how to go about complaining. If this was how the aeronautical industry, in which I worked before having to retire at 49, we would have not advanced to the point where it is by a large margin the safest way to travel.

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Dr Charles Shepherd
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by Dr Charles Shepherd on Mon Aug 19, 2013 9:51 pm

Re: ME & FM on going support Poor!!!

John

If you have read some of the replies on this forum I have been giving over the past few days you will know that as someone who has ME (I don't actually meet research criteria for CFS) I have a great deal of sympathy with what you are saying

The MEA, as a patient support charity and research funding charity, is playing a part in trying to change things by educating GPs, campaigning at a political level and working with the DWP (in an evidence based review of ESA WCA) to try and make benefits more fair and effective for people with ME/CFS

But the charity sector cannot do this alone and there has to be political campaigning as well - which is why you may have seen that I am trying to get people to speak to their MPs about benefits, research and services AND to get them to join the APPG on ME at Westminster

So I would agree with my colleague Dr Nigel Speight (MEA paediatric adviser) who frequently says that people with ME/CFS deserve an apology from the medical profession for the way they have dealt with this illness for much of the past 50 years
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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