Mother Arrested After Death OF ME Sufferer

A mother has been arrested on suspicion of murder following the alleged mercy killing of her daughter, who had been seriously ill with ME for 17 years.
At the age of 14 years Lynn Gilderdale 31 , was struck down by ME - an illness greatly misunderstood .
Since her diagnosis with ME (myalgic encephalopathy) she had required looking after around the clock, and her mother Kay, 54, was her full-time carer.
An inquest into her death was opened and adjourned at Hastings Corners Court.
Once Sussex police have completed their enquiries, the case file will be passed to the Crime Prosecution Service (CPS) to decide if there is enough evidence to bring charges of murder or manslaughter.

I did not know Lynn, but I do know her face The 25% ME Group and I do know her illness.
My thoughts are with her family, especially her mother.

I'm Too Knackered To Walk To The Well !!!

This is the comment Gail Porter made this morning in relation to the illness ME. She was a guest panelist on The Wright Stuff and remarked

People in Africa don't have ME, you don't hear them saying I am too knackered to walk to the well

I guess she thinks it's funny. I wonder if she thought it funny when she was disbelieved regarding her health condition ?
Its a old "joke" of Ricky Gervais, not funny when he says it and not funny by celebs who copy him. Let them come and walk a day in my shoes..... it would be interesting too see if they would continue to comment on conditions they obviously are ignorant off...all in the name of comedy!!!

I sent a e-mail........lets see if I get a reply

Chronic Artists

Chronic Artists is a blog dedicated to those creative people who have to balance their artistic practice with the challenges of life with chronic illness or pain.
They may be an artist, writer, photographer, musician or artisan. They might be severely ill or mildly affected by their chronic health condition and/or pain. They may be from anywhere in the world. The Chronic Artists blog and blog ring were set up in June 2008 by RachelCreative.

The blog asks Guest Questions and chronic artist friends may reply.

I feel priviledged to be part of this and have answered my first "Guest Blogger Question" today.

What Made You Become An Artist

I have always had a keen interest in art but never really pursued it as a hobby. One day a friend of mine, also a ME sufferer invited me to paint with her. As much as I love painting I find this a drain on my limited energy and I am unable to paint very often. I picked up a camera and discovered the world through a lens, this has now become my way of escaping the daily struggles of living with the illness ME. I am amazed on a daily basis at the myriad photographic opportunities I can find within the confines of my little corner of the world.

Blueberry Kiss….this was taken whilst horizontal on the sofa.

New Girl In Town

Yet another hairy monkee, this time for my friend Victoria who is severely affected with ME. She is housebound for the majority of the time,but occasionally we manage adventures. When we get out for a airing,we should come with a health warning"Beware These Two Don't Know What There Doing"

Hopefully Victoria will get her on Friday (we have a plan...and that's scary) but meanwhile she has become a Big Brother fan

It's Hot And It's Red And It's Blue And It's Cool

A bit like me, striping off one minute and covering up the next, no I'm not menopausal ( not yet) but I have lost my thermostatic stability...at least that's what the doctors call it. If anyone finds it can I please have it back.

The Monkees And Me

Never let it be said that I give up. I am still attempting to knit knitting those hairy monkees. There is a hard pattern and a easy pattern, so far I have been sticking to the easy one and even at that they are turning out looking nothing like vaguely like monkees. On saying that lots of people children seem to like them and as I am obviously deluded I will keep on clicking those needles. Just a quick note about the hard pattern, the one with the dreaded gusset and the mouth that is beyond me. My lovely friend Kaz had now sent me detailed instructions along with pictures of how to sew the mouth,its not everyday you get a very big close up picture of the inside of a monkees mouth in your inbox. If there is such a thing as e mail police, this one would have baffled them. So, eventually I will have another go. But for now here are my latest creations.
Firstly a non hairy one, knitted so badly too shy to be seen

But eventually loved by my niece Eleni, she loves them all and I don't even have to bribe her

Then we have the latest hairy variety, these are for Jason and Louise, my cousin's kids

And a third one had to be made for Eleni, here they all are enjoying some time together

I overheard them talking earlier today (perhaps I should have said mad and deluded), wondering why they had not been delivered to their new homes

"I am getting a bit fed up sitting around in these baskets, when do you think we are going to be let loose."

"Who knows it could be ages, she's not well and keeps complaining that they want her to practise CBT". "What's that". "Hmm.... I think it stands for Climbing and Balance Therapy" "That sounds easy, if we could get out we could show her how its done"

"Lets make a run for it.....come on... up and over "

"Hurry up you two"

"Just a little bit higher, put some effort into it"

"Now if only she would listen to the doctors, she could be having as much fun as us"

Petition To Limit The Promotion & Delivery Of Cognitive Behavioural Therapy [CBT] within the NHS

This is a E-Petition to the Prime Minister. This petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms.
Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS).

http://petitions.pm.gov.uk/NHSCBT/#detail

Blood samples wanted for ME/CFS genes expression study

ME researchers are looking for volunteers to supply blood samples to the ME/CFS genes expression study being conducted at Glasgow Caledonian University by Professor John Gow and his research assistant Dr Suzanne Hagan.
They are very grateful for anyone who can either donate a sample of blood for this or pass the information to anyone they know who would wish to take part.
Ideally they would like a 5ml sample of blood in an EDTA tube (not heparin) and a 5ml blood sample in a clotted plasma tube together with a covering letter from the clinician, containing brief details of the case history.
Patients must have been diagnosed for a minimum of 6 months.
The researchers would be happy to pay the postage for any samples sent from surgeries or clinics if required but they cannot afford to pay for the clinician's time.
If you are able to help please contact
Dr Suzanne Hagan
Room C223A, BIO, Charles Oakley Laboratories, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 0BA.
Tel: 0141 331 8615; fax: 0141 332 3208

ME: 'Invisible disease' is now easier to read

An extract from The Telegraph 18th March

A simple blood test may revolutionise the way we treat patients with ME, reports Bob Ward
British researchers are close to developing, for the first time, a blood test and potential drug treatments for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), following groundbreaking work on its genetic origins. ME/CFS affects about one in 200 people, and women sufferers outnumber men by six to one. It causes a constant feeling of extreme exhaustion and malaise for more than six months, along with sleep abnormalities, memory and concentration difficulties and a great deal of pain.
In its most extreme form, the disease leaves sufferers bed-ridden and can even be fatal.
But patients now have new hope, thanks to research published in the Journal of Clinical Pathology by Dr Jonathan Kerr of St George's University of London and his colleagues.
They have identified 88 genes that produce different levels of proteins and other molecules in ME/CFS sufferers compared with the rest of the population.
Dr Kerr's team carried out a complex analysis of the records of 55 patients and found that they could be divided into seven sub-types according to the specific gene combinations found in their white blood cells, and the severity of their symptoms.
The most acutely affected patients had 71 of the 88 gene abnormalities.
The results of this work should allow better understanding of the causes and development of the disease. Many of the genes are known to be affected when a person contracts a virus, a factor which is believed to trigger many cases of ME/CFS.
Importantly, the researchers also recognised that five of the 88 genes are targeted by drugs which are already used to treat other diseases.
The team is now investigating whether the faulty genes produce abnormal levels of proteins that can be detected as minute quantities of "biomarkers" in the blood of patients.
"If proven to be sensitive and specific indicators of the illness, the discovery of protein biomarkers could lead to the development of a diagnostic test for ME/CFS, which would revolutionise our approach to this disease," explains Dr Kerr.
He will present his results at a conference on ME/CFS biomedical research in Cambridge in May.

Kalinihta Ellada

I have really got to get to grips with this and start blogging. To be honest I forgot all about it. Anyone with a ME brain would understand this. I had a really relaxing break recently in Crete, the highlight being a chinese massage on the beach, it made me feel 2ft taller.Think I have now got the post holiday blues. It surprises me everytime I go that I can feel slightly better, less pain, less fatigue and able to do more. Now back home, back to reality I feel somewhat angry that it cant be like that more often.