Monday, August 24, 2009

The crippling illness that GPs refuse to diagnose | Mail Online

The crippling illness that GPs refuse to diagnose | Mail Online:

"For a long time many doctors saw fibromyalgia as largely a psychological problem, but ten years ago it was recognised as a genuine medical condition by the World Health Organisation. Yet some medics remain sceptical. ‘The problem is that many of the symptoms of fibromyalgia are vague,’ explains Dr Heike Romer, a consultant in pain management in the NHS and at the Spire Liverpool Hospital. ‘Often GPs treat patients’ symptoms separately, rather than looking at them as a group and realising they indicate fibromyalgia. And because these symptoms aren’t life-threatening and the patient isn’t turning green, they are seen as a malingerer.’

Dr Tom Gilhooly, a GP from Glasgow who has worked with fibromyalgia patients for 20 years, believes the current approach to treating the condition is inadequate. ‘Often the patients I see are on a cocktail of drugs. Instead of handing out drugs for the symptoms, we have to get to the underlying cause of the problem.’ Dr Gilhooly believes this cause is an immune system response, perhaps to a virus or trauma - such as an accident - or simply to the body being pushed to its limit."

Wednesday, August 19, 2009

‘Untruths’ about NHS system of healthcare -Times Online

‘Untruths’ about NHS system of healthcare -Times Online: "Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in this country, who can access no effective NHS treatment for their physical illness, might agree with Mr Hannan in that they would not wish their NHS “care” on anybody.

ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.

All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?
H. Patten
Frome, Somerset"

Tuesday, August 18, 2009

The Life Span Institute at the University of Kansas

The Life Span Institute at the University of Kansas: "Chronic Fatigue syndrome, also called chronic fatigue and immune dysfunction syndrome, describes a serious chronic condition in which individuals experience six or more months of fatigue accompanied by physical and cognitive symptoms. Do not use terms such as Yuppie Flu, malingering, and hypochondriasis as they are pejorative, imply personality disorders, and are not scientifically supportable. Say person with chronic fatigue syndrome."

Sunday, August 16, 2009

I'd rather have cancer, says Alex Wilson-Glab | National News |

I'd rather have cancer, says Alex Wilson-Glab | National News | "Alex has muscle pain, fevers, chills, nausea, severe fatigue and can barely walk from bed to the bathroom.

Alex wants to raise awareness about CFS, which was once known as the 'yuppie flu', saying it is a recognised medical condition and not a psychological disorder.

Alex, who sometimes needs a wheelchair, said one person had died from CFS in Australia and she fears she will be next. 'I don't think I will ever recover completely. It would be better to die because people would listen,' she said.

Aspiring lawyer Alex is doing one VCE subject at Lowther Hall but is so sick she can't attend school.

She will be admitted to the Royal Children's Hospital on Monday for monitoring.

Her mother Jeannie, 56, said the VCAA was refusing to give Alex extra time for her VCE exams. She was furious the medical world didn't recognise the severity of CFS.

'All the goals she has had all her life have been taken away from her,' Mrs Wilson-Glab said. 'Her teenage years have been taken away from her.'

She said they remained positive and the family encouraged Alex to achieve everything she wanted in life."

Tuesday, August 04, 2009

Teenager took his life after suffering years of ill health with ME/CFS

Teenager took his life after suffering years of ill health - Eastbourne Today

Contains: A teenager took his own life after struggling to come to terms
with having ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Guy
Ramsey was diagnosed with the condition when he was 12 and as a result had
to take time off school and was often in pain ... A statement read out on
behalf of Guy's mother, Alison Ramsey, who attended the inquest, explained
that he would often become withdrawn and irritable ... "I said how much I
loved him and how proud I was of him but he said he was fed up and wanted to
get better." ... Assistant deputy coroner Kate Palmer recorded a verdict of

Just too sad, a truly depressing condition with very little help, support or even treatment available for patients with ME/CFS