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.
http://www.sophiaandme.org.uk/andyburnham.html#**
ReplyDelete2009 World Health Organisation (WHO) – Dr Chan.
2007-09 Executive of WHO – Sir Liam Donaldson.
1997-2009 Ministers of Health – Alan Johnson and Andy Burnham.
1997-2009 Chief Medical Officer – Sir Liam Donaldson.
1997-2009 Wessely psychiatric school, who advise the Government on ME.
2007 Baroness Scotland – did not deal with such issues.
2007 Lord Goldsmith – did not deal with such issues.
2006-2007 General Medical Council (GMC) examined complaints against the 6 doctors – they were cleared. They employed psychiatrists as their 'specialists'.
2006-2007 Social Services examined the complaint against the social worker- she was cleared.
2006 June Sophia’s Inquest – result: she died from ME.
2006 Independent research on Sophia’s spine – positive proof of infection.
2005 post mortem – no cause of death identified.
2005 November 25th - Sophia died. The 3rd GP, Dr Clarke, refused to visit to confirm her death as she too, unbeknown to us, had struck Sophia off her list.
2004 Legal aid refused – “no significant human rights issues.”
2003 August 8th - Although no longer her GP,Dr Firth removed Sophia from her practice.
2003 July 23rd –Sophia was released from the mental hospital by a Tribunal.
2003 July 11th – Police smashed down Sophia’s front door in order to enable Sophia's ex the psychiatrist and the social worker to forcibly remove her from her home and incarcerate her in a mental hospital.
2003 June 23rd – the social worker, Catherine Connolly, lied under oath,therby committing perjury, in order to ensure that Sophia was 'sectioned'in a mental hospital.
2003 June - Chief Executive of Brighton Hospital, Dr Rosenberg, would not answer the letters sent him.
2003 May 21st – The Court Manager ignored the letters sent regarding Sophia’s imminent illegal sectioning.
2002 Dec 9th The psychiatrist, Dr Baginski, threatened to ‘section’ Sophia if she did not get better within six months or, if she refused to enter the Romford Clinic.
2003 Dr Firth asked for Sophia’s mother, who was her carer, to be sectioned.
2002 Dr Firth finally secured a psychiatrist, Dr Baginski, who would agree with her i.e. that ME was a mental illness.
2000 – 2002 Dr Firth GP asked a number of psychiatrists to become involved with Sophia’s case. They refused.
2000 Sophia is officially diagnosed with Myalgic Encephalomyelitis (ME) by Dr Hartley.
1999 Sept. - Sophia got ‘flu’. By December she was bed-bound for 95% of the time.
For me this is a sad time. I think of Kay Gilderdale and the hell she is going through,
ReplyDeleteIt is hard to know just how many sick young people there are with an ME diagnosis who are just left to rot away.
My child was a young teenager when she was diagnosed with ME. She had already been ill for a number of years by then. She only ever had one lot of blood tests carried out on her right at the beginning of being ill. We were told it was post viral blues.
Once the ME label had been given it became carte blanche for the medical profession to metaphorically shrug its shoulders however ill she became. Somehow it was HER fault that she was ill.
What really struck me was that in spite of the advice from the ME charities that in time with rest she should improve, she in fact deteriorated year on year. I was made to feel responsible for that because she had pushed too hard and done too much - in fact she had done pretty much sod all.
What child in their right mind would go from being fit and active to lying in bed for days on end. My daughter had lots of friends and hobbies, she was always busy. She had a great time.
She lost all that because she couldn't manage to do anything apart from going to school when she could. She would have done anything to be more normal, but she couldn't do it.
In the few months before we got a proper diagnosis she was far worse. I was pretty convinced she had neurological ME. I used to look at the 25% ME website. On the front of that site there was a young woman - it was Lynn Gilderdale. My teenager looked just like her. Neurological ME frightened me. Seemingly nothing can be done for it. I felt that we were facing a terrible chasm. She was in bed nearly all the time, noise and light sensitive and her swallowing reflex was no longer working properly.
Thank heavens I was told about Lyme Disease and was able to find a doctor who didn't just think, without testing or examining her physically, that it was in her head. She had lots of tests, some very basic, which should have been done by her GP's who didn't care, and these showed how ill she was.
As Joanne says there are doctors out there who are finding that a good proportion of ME patients have an underlying viral or bacterial infection. If these are addressed then improvements are possible. At the very worst the decline in health is very often stopped which in itself is quite something.
Getting well was not easy, but worth every bit of the hard work. She is now fit, well and leading a normal life. Without the diagnosis I dread to think where we would be today.
Again as Joanne says don't just accept that there is nothing to be done, trawl the net and educate yourself. Increasingly this is what people are doing and quite a number of people who had been written off medically are doing much better when they embark on treatment.