Sufferer’s plea for more research rebuffed by Health Secretary

Christine Wrightson, who was confined to bed after being struck down by a mystery illness in 2006

Christine Wrightson, who was confined to bed after being struck down by a mystery illness in 2006

First published in News York Press: Photograph of the Author by , richard.catton@thepress.co.uk

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.”

Comments (4)

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9:38am Fri 14 Jan 11

Digeorge says...

It is strange how going private has actually managed to get this lady a diagnosis.

However, as someone who has been researched to death, it hasn't done me much good.

But what I am calling for are those that have been diagnosed with a particular genetic disorder are reviewed as I am aware that the word 'carrier' does not apply in some genetic conditions.

It is also odd how some GPs and also major teaching hospitals cover up misdiagnosis of ME/CFS and personally the cases that I have come across are either neuroendocrinology as above, or complex infections such as lyme disease and lupus with central nervous system complications from being misdiagnosed.
It is strange how going private has actually managed to get this lady a diagnosis. However, as someone who has been researched to death, it hasn't done me much good. But what I am calling for are those that have been diagnosed with a particular genetic disorder are reviewed as I am aware that the word 'carrier' does not apply in some genetic conditions. It is also odd how some GPs and also major teaching hospitals cover up misdiagnosis of ME/CFS and personally the cases that I have come across are either neuroendocrinology as above, or complex infections such as lyme disease and lupus with central nervous system complications from being misdiagnosed. Digeorge
  • Score: 0

11:04am Fri 14 Jan 11

Digeorge says...

I also meant to say that you are lucky that you have been treated and are not in London and in Yorkshire, there are some very dodgy doctors involved in the area of ME/CFS and some rather unethical research and psychiatric manifestations such somatisation.

Be careful, be wise and do your own research wisely.

Also contact One Click Group.
I also meant to say that you are lucky that you have been treated and are not in London and in Yorkshire, there are some very dodgy doctors involved in the area of ME/CFS and some rather unethical research and psychiatric manifestations such somatisation. Be careful, be wise and do your own research wisely. Also contact One Click Group. Digeorge
  • Score: 0

8:49pm Sat 15 Jan 11

Joanne60 says...

I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculoskeletal Disease, Polymyalgia Rheumatica as my symptoms deteriorated. It took 5 doctors and 3 Rheumatologists 4 years to diagnose me. GP suspected Lyme Disease after a chance course of antibiotics significantly improved my symptoms.(I had attended surgery at times of Tickbites, Bulls eye rashes, summer flu' all documented on their computer)
After many months of antibiotics following International Lyme and associated diseases Guidelines,( www.ilads.com ) I am nearly 100%. I have no pain or disability, no fatigue and can even cycle again although for 3 1/2 years I was not able to walk up or down stairs properly. I was retired early from the Civil Service on ill health grounds.
Research done shows a significant number of patients diagnosed with ME/CFS actually have Lyme Disease but getting properly diagnosed is difficult because the tests miss upto 50% of cases so like many illnesses it should but rarely is a clinical diagnosis. ( Lyme can also affect the pituitary gland)
I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculoskeletal Disease, Polymyalgia Rheumatica as my symptoms deteriorated. It took 5 doctors and 3 Rheumatologists 4 years to diagnose me. GP suspected Lyme Disease after a chance course of antibiotics significantly improved my symptoms.(I had attended surgery at times of Tickbites, Bulls eye rashes, summer flu' all documented on their computer) After many months of antibiotics following International Lyme and associated diseases Guidelines,( www.ilads.com ) I am nearly 100%. I have no pain or disability, no fatigue and can even cycle again although for 3 1/2 years I was not able to walk up or down stairs properly. I was retired early from the Civil Service on ill health grounds. Research done shows a significant number of patients diagnosed with ME/CFS actually have Lyme Disease but getting properly diagnosed is difficult because the tests miss upto 50% of cases so like many illnesses it should but rarely is a clinical diagnosis. ( Lyme can also affect the pituitary gland) Joanne60
  • Score: 0

8:54pm Sat 15 Jan 11

Joanne60 says...

I should have said check out UK charity website Lyme Disease Action for more information at www.lymediseaseactio
n.org.uk
or chat with many other patients who were diagnosed with ME/CFS only to find they have actually Lyme Disease on chat line Eurolyme
http://health.groups
.yahoo.com/group/Eur
olyme/
I should have said check out UK charity website Lyme Disease Action for more information at www.lymediseaseactio n.org.uk or chat with many other patients who were diagnosed with ME/CFS only to find they have actually Lyme Disease on chat line Eurolyme http://health.groups .yahoo.com/group/Eur olyme/ Joanne60
  • Score: 0

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