ME campaigners offer condolences to Lynn's family
LYNN GILDERDALE, who died on Wednesday last week, and her family, struggled not only with the terrible effects of Myalgic Encephalomyelitis (ME), but also the stigma attached to its sufferers.
The root cause of the disease is disputed within the medical profession, with one school of thought suggesting the symptoms are entirely brought on mentally by the patient themselves.
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BRAVE: Lynn Gilderdale suffered from ME and was bed-bound
Jane Colby, executive director of The Young ME Sufferers Trust, has written a number of books raising awareness of the severity of ME, and spoke in detail with Kay Gilderdale about the problems Lynn had encountered after she was taken into hospital.
In Ms Colby's 1996 book – ME the New Plague – Lynn's treatment was described anonymously.
"Some of her stories were just wicked, just wicked. There is no other way to describe the way in which she was treated," said Ms Colby.
Suffering fits at specific times of the day, doctors would deliberately try to disorientate Lynn to suggest she was making it up. They would leave food across the room from her, and would leave her lying on the floor if she fell out of bed to try to force her to move.
Ms Colby, who fell ill with ME herself in 1985, and is still hindered by its effects, is working with doctors in Britain and the United States to try and prove the effects are caused by a virus she believes is similar to Polio.
"You would not know how bad it was until you have seen somebody in that situation and had cared for somebody with it," she said.
"You feel as if you have been poisoned, you are in pain constantly, you stink because of the sweat coming off you.
"It is dreadful. We are all devastated and our thoughts are with the family at this time."
Kay and Lynn Gilderdale worked not only with Ms Colby in trying to raise awareness of ME but were also members of the Kent and Sussex ME Society.
Colin Barton, chair of the society, worked on several occasions fundraising with Lynn's father Richard, a former sergeant with Sussex Police.
"In Lynn we have a very brave young lady. She worked tirelessly for years making the public aware of how severe the illness can be," he said.
He explained how around 10 per cent of people diagnosed with ME were so badly affected they were left bed-bound.
"The family have always done all they possibly can to help the cause of ME. The mother was a very caring woman who did all she could for Lynn," said Mr Barton.
4 Comments
by Jazzie S, California, USA
Saturday, December 13 2008, 4:55PM
“Yes, ME/CFS is difficult to diagnose and often be confused with Lyme. Lynn was a dear friend and we shared several other diseases derived from ME/CFS. I'm absilutely saddened by this news as with may other her dear friends are. I pray that out of this tragedy, a better organized ME/CFS Awareness Campaign will form worldwise.
My heart and prayers goes to the Gilderdale family.”
by Joanne Drayson, Guildford Surrey
Saturday, December 13 2008, 9:15AM
“I have been ill 51/2 years and diagnosed with many things including ME/CFS by Prof from top London hospital. Ater a course of antibiotics improved my symptoms my GP suspected a bacterial infection and because there had been several cases of Lyme Disease at the surgery she suspected this. There was a record of when I had attended with bites and rashes and again with summer flu' but at that time they weren't aware that Lyme Disease was prevalent in this area.
I eventually saw a specialist in tickborne illness who I found through charity Lyme Disease Action. He gave me a clinical diagnosis of Lyme Disease. My blood tests were negative but 1. they are unreliable 2.I had been on steroids for wrong diagnosis and 3. I had been on antibiotics which can also skew the tests.
I have been treated according to ILADS guidelines on long term high dose of antibiotics. Thank goodness my GP did not accept HPA advise or I do not believe I would be enjoying the improvements in my health that I am. I can again walk upstairs something I have not been able to do for 31/2 years and I no longer have constant pain.
I belong to Eurolyme a chat line for lyme disease sufferers and 75% or more people have been previously diagnosed with ME.
Dr Charles Sheppard says that the causes of ME can be genetic susceptability, infection and sometimes vaccine related.
All these three things are also connected to Lyme Disease infact some research has linked the same genetic predisposition between ME/CFS and Lyme.
I do not say that all ME is Lyme mearly that how many ME patients are tested or clinically assessed by an expert in the field of lyme.
Check the website out and do your own searches before discussing with your doctor.
I know of a young girl Elizabeth who had ME virtually bed ridden from the age of 8 who at 17 went to the Breakspear Hospital in Hemel Hempstead and was diagnosed with Lyme and other co infections. After treatment on IV antibiotics anti virrals etc she is now for the second year running working in a skii resort in France. How's that for a success story. The ME children's charity did all they could to disuade her mother on this coarse of action and will not consider the possibility of a connection in many people between ME and Lyme.
Best wishes.”
by Kate, USA
Saturday, December 13 2008, 1:51AM
“I don't know about the "stink because of the sweat coming off you" part, but I still know what this dreadful illness is like, and it's appalling that doctors in that region of the globe would treat patients in such a way. You would think by now they would "catch up" with the research being done; anyone not keeping up with these crucial studies needs to have their license revoked. I'm sure I speak for all M.E. sufferers in saying that this family has our support and respect!”
by Smiffy, Frome
Friday, December 12 2008, 5:23PM
“Rest in peace Lynn after so much suffering.
The way that patients with the devastating neurological M.E. are treated in the UK, with all research and treatment funding going to psychiatrists who insist, against all scientific evidence, that ME is an 'abnormal illness belief' is a national scandal.”