At this sad time our thoughts are with Kay Gilderdale as she faces her trial, although I suspect this ordeal will be nothing compared with her anguish over the years of helping her sick child. Lynn had been left by the medical profession to fall deeper into the clutches of ME/CFS. There are plenty internet links and newspaper articles discussing the trial, but where was everyone when Kay needed support?
My thoughts also go out to Criona Wilson the mother of Sophia Mirza Sophia died in 2005 after struggling with her ME and the Medical World for many years this must also be a sad time for Criona. Tests done on Sophia's spinal cord found signs of inflammation, although Sophia had been sectioned and treated for a psychiatric illness against her families wishes. Do look at the horrific struggles Sophia and her mother were subjected to, details in the link above.
At the CFSAC meeting in October Dr Bell did a presentation on Factitious disorder and CFS in Adolescents. In all the excitement of the XRMV retro virus I think the significance of Dr Bell's presentation was overlooked.
Anyone who follows this blog will know I was diagnosed with ME/CFS Fibromyalgia, Poly Myalgia Rheumatica, Arthritis and eventually it turned out to be Lyme Disease and on long term antibiotics I got my health and my life back.
During my involvement with Lyme advocacy groups I have met several parents who have had problems with the authorities when the parent has tried to pursue private health care that was different than current main stream doctors would prescribe ie. antibiotics nothing too radical!! I had heard that patients with ME/CFS had had similar problems and so I realise that the presentation Dr Bell made may well be of some use to parents of young children whether it be ME/CFS or Lyme Diagnosis that they are trying to get their child treated for.
Following the CFSAC meeting in October I e mailed Kenneth Friedman this was his reply
'In the United States, two studies indicate that approximately 30 percent of CFS/ME patients actually have Lyme Disease.Getting physicians to re-check their patients is not easy.'
This is a link into my earlier post here
In the UK there is a similar problem not only do doctors rarely consider Lyme disease before diagnosing ME/CFS even though the NICE guidelines specifically say it should be excluded before a diagnosis of ME/CFS but the ME charities are remiss in raising awareness of the problems of mis diagnosis.
To cloud the issue further the blood tests NHS use are considered to miss up to 50% of cases and currently HPA and thus most of the NHS doctors follow IDSA guidelines which are currently being reviewed due to a legal challenge.
However I am in touch with some ME/CFS and Lyme patients that have been helped by private doctors.
As my previous post says Taking Control is so important.