‘Sufferer’s plea for more research rebuffed by Health Secretary’ – The Press, York, 14 January 2011

January 14, 2011

From The Press, York, 14 January 2011 (story by Richard Catton).

A SERIOUSLY ill York woman has asked the Government to fund more research in to conditions which cause chronic fatigue.

Christine Wrightson, 64, had been confined to bed in her Huntington home after being struck down by a mystery illness in 2006. After NHS investigations failed to provide a diagnosis, Mrs Wrightson went private and was found to be suffering from pituitary disease and hypocortisolaemia, conditions similar to ME.

After recently writing to Conservative Health Secretary Andrew Lansley, pictured, she received a reply telling her that conditions such as ME and chronic fatigue syndrome (CFS) were “neurological conditions of unknown cause”, and that the nature of the symptoms “could not be fully explained”.

Since her diagnosis in 2008, Mrs Wrightson has been prescribed drugs which have helped her obtain a degree of stamina, but she said it may take years before she is free of symptoms.

“I need a lot of bed rest and my life is very limited,” she said. “My consultant told me that when your body is starved of hormones for years it will take years to put them back.

“I want more research in to what’s causing ME and inflammation of the pituitary gland. They aren’t putting any funding in to this at all. I want GPs to accept it as a serious condition.”

She said prior to the condition taking hold in 2006 she led a reasonable life, despite also suffering from rheumatoid arthritis.

“Without the care and support provided by my husband I would not have been able to survive,” she said.

“There were 250,000 people diagnosed with chronic fatigue syndrome 10 years ago, I wonder how many of those have got pituitary disease.”

8 thoughts on “‘Sufferer’s plea for more research rebuffed by Health Secretary’ – The Press, York, 14 January 2011”

  1. Fatigue is a very broad subject and there will absolutely be many causes. This unwillingness to deal with the neurological disease ME, has led far too many into believing that they have ME, and given rise to lazy doctors who will not do their job.

    1. I despair JT really I do.

      What is ‘ME’ JT? What makes you any different from me and how can you prove it? What ‘treatment’ do you want or expect?

      Does ‘ME’ as a label better define your illness than CFS does mine? Is that really what we are talking about – a label?

      What neurological treatments could or should I expect at this moment in time with the little we know about ‘our’ illnesses?

      ‘…has led far too many into believing that they have ME’ Do me a favour will you. If your ‘ME’ was so easy to define and prove and treat they would be no issue.

      ‘It’ isn’t and there is. But the issue requires fair support for all sufferers not just those holding up the banner of ME as if it were something unique and totally different.

  2. I agree Eleanor.

    Shame the article is headed ‘Sufferer’s plea for more research rebuffed by Health Secretary’ when from his quoted comments that is not the reality of what Lansbury has said.

    It kind of ‘dums-down’ the article which is a shame given that this lady has a story to tell.

    Others including myself – perhaps you guys too – have received what may now be ‘standard’ responses from Lansbury. Yes it would be great to hear a more positive response – but at this moment in time is it likely?

    Not that it should it any way stop people asking for more funding of research. Or trying in their own way to raise the awareness of this illness.

  3. I agree that the headline is not justified by the content of the story – perhaps a more accurate headline appeared in the print edition.

    Christine asked me to post the article. She’s been campaigning for many years for greater recognition of pituitary gland problems in ME; unfortunately, it’s not got her very far. She phoned to thank me this morning for flagging it up.

  4. I’ve given up writing to politicians as they do nothing and and tell me what I already know. The Welsh Health secretary, Edwina Hart, has said something about a ‘pathway’ for ME sufferers in Wales. What the hell’s a pathway?

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