Archive for the ‘blogging’ Category

Helen has organised a raffle with prizes donated by UK Channel Five.  Tickets can be purchased online and proceeds go to Action for ME

“Ellephantastic Draw in aid of Action for M.E.

Draw date: 3rd July 2010
Deadline to return/buy tickets: 3rd July 2010 2pm 
1st Prize: Red England T-shirt signed by Ian Wright
2nd Prize: White England T-shirt signed by Ian Wright
3rd Prize: Justin Lee Collins book “Good Times” signed by Justin Lee Collins
Plus other prizes including T-shirts (2) signed by The Gadget Show presenters & a set of signed pictures from The Gadget Show presenters
(All prizes have been donated by Channel Five) 
Tickets cost just £1.00 each”

Find out more  at Ellephantastic Draw in aid of Action for M.E.


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“It may sound strange…, but longer I live with this condition, more I get confused. I assume it is because I see more complicated facts of the condition.”

Rachel from Blue Coffee Mug offers her thoughts on ME/CFS Awareness Day

“Despite ME/CFS is biomedical condition, majority of medical practitioners do not want to treat it, because of the complexity and it is time-consuming to understand/treat. On top of that, they do not have  relevant information about the condition.

Governments hardly allocate research fund for ME/CFS. Without biomedical research into ME/CFS, we cannot have effective treatment. Some of biomedical researches into ME/CFS are on hold due to lack of funding… And a very little fund is continuingly wasted on psychological researches, which doesn’t give us any treatment. So far, the breakthrough findings about ME/CFS were funded by donation and/or private funding.

Despite of the magnitude of suffering, patients are left without treatment and/or support. Often we educate each other about ME/CFS and possible treatments.”

Read the full post Thoughts on ME/CFS Awareness Day 2010

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 Real people, real lives and a really accurate insight into life with ME/CFS:

“What is it like to suffer with ME? Those who are most severely affected can have the most horrible symptoms – paralysis, nausea leading to the inability to eat, hypersensitivity to light, sound, smell, fatigue so intense that they cannot even sit up. Some of the worst affected spend months or even years in dark rooms, flinching at every sound, in constant discomfort and totally dependent. I am fortunate – my illness has never reached this level. Since becoming ill 3.5 years ago I have always been able to look after myself, although sometimes with great difficulty and pain.

I want to raise awareness of people like me, the people who are just well enough to be independent but ill enough to lead a highly restricted and uncomfortable life. For me, ME is not just a list of symptoms [as given above], it is what it has done to my life. I can still study and I could probably work part time, but I cannot take energy for granted. I have to measure my energy out in spoonfuls. If I take too much, I suffer more, but I always want to take more.”

From ME/CFS Awareness Day – James

“I NEVER wake up feeling good. Every day I wake up feeling like I have a viral hang-over. I always have some kind of illness type headache, you know the kind you get when you are coming down with something, I ache all over, somedays more than others, but it is always there and I cannot eat in the morning because I feel so sick. I do not have good sleep and often wake up gasping for breath, not like an asthma type inability to breath but like my throat has closed up or I have been strangled – I think my muscles in my throat are that weak that they just relax to the point of closing.”

From My M.E. Week  –  Beauty

“If you see me looking well – which I do when I’m in public, most of the time;
or see me getting to the supermarket – which I do some of the time;
or if you have a conversation with me and I’m upbeat – which I try damn hard to be all of the time;
you cannot be expected to understand the reality.

I have tried to be a bit more explicit, but when I mention how exhausted I am – you might say, oh yes I’m tired too…”

“To argue that my exhaustion is so deep it is like a coat of lead that I wear 24 hours a day – that prevents me getting out of bed, that means I hurt to wash my hair and hang out my washing because my arms have to be held up, that means I pant after going up the stairs and need a rest after washing, then after dressing, then after eating my breakfast…

To explain that it is hard to get things done because my brain doesn’t work properly any more. You know how you feel when you’re hung over? Like your head is full of wool and your body is poisoned? That is my normal state. I forget things that used to be second nature. I struggle to make a cup of tea if you’re talking to me, to hold a conversation without losing my thread, to write a blog without wanting to smash the computer because I keep getting words wrong, to run a bath without putting the wrong tap on and flooding the house, to put toothpaste on the brush and not Veet.”

From My ME – Ros

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Dots and Yarns has shared a photo essay of a normal day with ME and a positive attitude

“Usually, on the 12th of every month I participate in the ’12 von 12′ pictures of the day – and I will proceed to to that, but 12th May is a very special day for me. It’s International CFIDS/CFS/ME Awareness Day. So for this ’12 von 12′ I will try to paint the picture of what it means to live this illness…”

See the photos at 12 von 12 on CFIDS/CFS/ME Awareness Day – Dots and Yarns

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Maggie at Liverpool Leftovers has been reflecting on those with ME who face the loss of their personal lives, something that isn’t often written about.

“But I know of so many people with this DD (Damned Disease) who live alone, who cannot get out to meet with potential partners and friends, who have to face the possibility of never sharing their lives with anyone.

Meanwhile we are all left with clinics run on psycho-social theories that do not address the effects of this illness even in psycho-social terms.

I delight to have the joy of twin grandsons, but I despair that many of my fellow patients will be deprived of this joy in their lives.

It’s time the MRC and NICE woke up to the fact that around 250,000 people in the UK are not only lost to the work place, but also are losing out on one of the most important aspects of their lives – their family lives.”

From International ME Awareness Day 2010 – Maggie, Liverpool Leftovers

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“Those of us with ME know how to hide our disability as best we can until it reaches the point where we run out of energy and we start to slip through the cracks.”

Laura Ann Dunks explains what it’s like to live with ME and just how disabling an illness it can be:

“There are 250000 people with ME in the UK. Most people have a relapsing and remitting illness, where they can manage to stay fairly stable if they stay within their own boundaries. If they exceed those boundaries, whether it is to sit up in bed, or cycle round the block, then they can very quickly because very exhausted, weak, unable to move, or to explain what is wrong. This will then cause them to relapse and within the next 24 hours or longer they will become far worse than they were before they did too much. However, a small proportion of people have a progressive illness where by everything they do is too much and they get continually worse. Some patients appear to improve as long as they don’t overdo it, with some patients going in to remission and being able to live normal lives for a period of time. However, studies have shown that only 2% of patients recover completely.”

From May 12 is ME/CFS Awareness Day – Laura Ann Dunks, The Voice Within

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Guilt, denial and “first world” problems? Claire blogs for ME Awareness:

“Many quacks – and by quacks I mean the types who deny the heaps of medical evidence and the W.H.O. classification – run clinics where M.E. sufferers are denied their essential supports and told that they can do without them if they want it enough. Women and children with M.E. are mentally and physically abused by the health system. Sophia Mirza was forcibly sectioned having refused to attend a clinic where GET and CBT were mandatory for patients. She died two years later.

The element that links these incidents is denial. It is difficult to understand how a doctor can say with a straight face that patients think themselves ill. Yet a small group of psychiatrists are defining British government policy towards M.E. with this very argument, and while some are growing wealthy applying harmful “cures” to these supposedly recalcitrant women, there is no funding for biomedical research into the illness.

This is nothing new. Multiple Sclerosis was once termed hysterical paralysis…

From M.E. awareness day: In Denial – Claire, Scríbhneoir páirt-aimseartha

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