18 years and zero support from NHS

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tisha4444
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by tisha4444 on Thu Aug 15, 2013 10:22 pm

18 years and zero support from NHS

I was diagnosed with ME almost 18 years ago - and apart from being given the name I was not given any advise, medication etc. After 4 years of boom and bust I researched myself and learnt about pacing. I learnt this myself and have to stick to quite rigid guidelines to be able to cope with even extremely limited activity.I have requested to be sent to ME clinic but have been told on numerous occasions that because I also have hypothyroidism I'm not eligible - I take thyroxine each day. I was in bed for almost two years at the beginning and have often been housebound for several months at a time over the years. My life is extremely limited. I was even told by a previous GP to just accept I am going to be disabled and to count myself lucky that I wasn't born this way. I feel my life has been cancelled and l have been abandoned by the NHS. Any advise? I will be 60 in a couple of years and feel,like I'm running out of time to gain any improvement.

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Dr Charles Shepherd
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by Dr Charles Shepherd on Thu Aug 15, 2013 11:05 pm

Re: 18 years and zero support from NHS

Although some of the symptoms of ME/CFS and hypothyroidism overlap it is perfectly possible to have both - in which case a person requires help in how to manage ME/CFS

If your GP feels that further help is required in relation to management I feel that you have a perfect right to be referred to a specialist NHS service

If this request is being refused I suggest you write to your MP (especially if he/she is a member of the APPG on ME) and ask him/her to intervene. A letter from an MP can have a remarkable effect on getting things moving! And send a copy of your letter to the Chairman of the APPG on ME (= Annette Brooke MP).
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

tisha4444
Posts: 3
Joined: Fri Aug 09, 2013 6:32 pm

by tisha4444 on Fri Aug 16, 2013 9:53 am

Re: 18 years and zero support from NHS

Thank you Dr Shepherd for your reply. I think the problem is in your phrase " if your GP feels further help is required in relation to management" Since I was diagnosed, the over-riding consensus of all the GP's I have seen (and I have moved four times) is that with ME nothing can be done - so they do nothing. Out of total frustration, in 1998, I paid privately to attend a week long Westcare residential course, which sadly has been my only experience of my illness receiving any serious consideration. It is only the coping mechanisms that I was taught there by their wonderful OT that have helped me at all. I will ask again, but I am sure that my GP will not feel that I require further help!

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Dr Charles Shepherd
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by Dr Charles Shepherd on Fri Aug 16, 2013 10:03 am

Re: 18 years and zero support from NHS

I used to do the medical input to these residential courses run by Westcare in Somerset and I know that many people found them to be extremely helpful - so we may have met in the distant past!

In the MEA purple booklet Dr Abhijit Chaudhuri (consultant neurologist) and I introduce these guidelines by stating that therapeutic nihilism is no longer an option for doctors - in other words there is a great deal that can and should be done to help their patients with ME/CFS

We can send a free copy of the 2013 edition to your GP if you send contact details to MEA HQ

MEA guidelines booklet for doctors:

http://www.meassociation.org.uk/?p=4038

52 pages of fully up to date information (and over 300 research paper references) on Research, Clinical Assessment and Management
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

tisha4444
Posts: 3
Joined: Fri Aug 09, 2013 6:32 pm

by tisha4444 on Fri Aug 16, 2013 11:30 am

Re: 18 years and zero support from NHS

How wonderful that you were involved in the course - it was extremely good! Such a shame that all ME patients can't have access to similar courses - I am sure it would enhance their lives dramatically. I will be seeing my doctor soon and will ask if he would like to receive this information - he is a new doc in the practise and I don't want to alienate him before he even gets to know me!
I must just say it was your book that my twin sister read when I was first ill and it played quite a role in my finally being diagnosed - so a belated thank you :)

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Dr Charles Shepherd
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by Dr Charles Shepherd on Fri Aug 16, 2013 11:33 am

Re: 18 years and zero support from NHS

Thanks !

The paperback self-help guide is called 'Living with ME' (Vermilion)

It is available free from any public library
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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