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Archive for the ‘awareness’ Category

I’ve made a range of Twibbons from the awareness badges.

You can add a ribbon to your profile picture for things like blogging, Facebook and Twitter using Twibbon. The ribbons are free and allow you to create a unique badge for yourself.

You can find a selection of designs at http://twibbon.com/rachelcreative

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Here’s a new way to be a ME/CFS activist and go beyond raising awareness. The ME/CFS Worldwide Patient Alliance is

“a group of ME/CFS patient advocates who think now is the time for a change. We hope to create this change through an effective, cutting-edge advertisement campaign, specifically to address what needs to be done to improve the quality of life of individuals with CFS, also known as Myalgic Encephalomyelitis (ME). This will be the patients’ voice. It will be our message.”

“”Our campaign aims to highlight the need for more biomedical research, increased public awareness, superior education for physicians and other health professionals involved in our care, and the need for a new name, one that shows the true severity of the illness and not just a single symptom, present in a multitude of other illnesses.”

With support from individuals and organisations such as

One of their first actions has been to place a ME/CFS advertisement in the Washington Post

“Time for the US and UK governments to take the following actions:

  • Provide more funding for biomedical ME/CFS research;
  • Develop a national research and clinical network, as recommended by the federal Chronic Fatigue Syndrome Advisory Committee;
  • Provide funding for XMRV/MLV clinical research in order to sustain momentum;
  • Protect the blood supply and explicitly prevent ME/CFS patients from donating blood;
  • Adopt the Canadian Consensus Criteria for diagnosis and research of ME/CFS;
  • Bring the Centers for Disease Control website in line with the recommendations of leading researchers and practicing physicians in the field of ME/CFS.

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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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Bloggers have been doing their bit to spread the world for International ME/CFS and Fibromyalgia Awareness.

“… in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. Chronic Fatigue Syndrome (CFS) is a serious disease with a ridiculous name. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E). It is often abbreviated ME/CFS.

2. ME/CFS is a complex, multi-systemic illness, effecting the immune, endocrine, cardiovascular, autonomic, and central nervous systems. It is classified by the World Health Organization (WHO) as a neurological disease.

3. In order to be diagnosed with ME/CFS, you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50%, as well as at least four of the following symptoms: post exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory loss or difficulty concentrating. These symptoms must be present for at least 6 months or longer. ME/CFS patients often also suffer from neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, flu-like symptoms, shortness of breath, chest pain, and other symptoms …”

From May 12th: ME/CFS Awareness Day – Laurel, Dreams at Stake

“Until my diagnosis and obsessive research as a result, I had no idea that there was an awareness day for CFS/ME. This is quite a shame. How are we to be better understood, receive more research funds, and find common workable treatment options with so much silence?

Chronic Fatigue Syndrome is life altering. Period. In order to obtain a diagnosis you must have a reduction in activity/functioning by 50%. Does this not seem alarming to the general public? Imagine, if tomorrow you woke up and suddenly were only able to do 50% of what you had done the day before. Imagine, if even accomplishing this 50% was like trying to climb out of bed with a severe case of the flu. Imagine, that this is a good day and on a bad day you are barely functioning at all…”

From CFS/ME Awareness Day – Dawn, Daily Life with “Hidden” Chronic Illnesses

“I am posting now to reflect on how devastating this illness is, how hundreds of thousands of people suffer silently, and how much COURAGE it takes to live like this — year after year after year after ……”

From May 12 – ME/CFS Awareness Day – Nina, Nina Colors

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Bloggers have been sharing their personal experience and writing about how ME/CFS effects lives as part of Awareness Day.

“I’m now in my 6th year of trying to fight M.E., that is, the 6th year from diagnosis. The first ‘real’ symptoms began in 2002, but it may have in fact taken hold even earlier than that. I remain determined to carry on fighting and hopefully not let it break me. Admittedly some days are very frustrating, but I refuse to let my spirit be quashed. The last few weeks have been very difficult – especially after a period of relative stability – and I again find myself with the frustration that is all too familiar. Of course, I am not alone. There are many others who fight on, trying to make the best they can of a very bad situation. I have a great admiration for all of them, many of whom have it far worse than I do. We are all blogging for Awareness Day.

From International ME/CFS & FM Awareness Day – Nikki, Freya Bean

“I started thinking about what I wanted to write and nearly decided not to write a post after all, as it seems self-indulgent, depressing and looks like a plea for sympathy. I don’t want to be defined by my illness. However, family, friends and colleagues have found it useful when I’ve been open about how it affects me, so here goes…

My symptoms at their worst:

  • Constant chronic fatigue. It’s difficult to explain how this type of tiredness feels, the nearest I can get is how you feel when you have flu, with no energy. Rest or sleep often makes little difference. At my worst, I hardly left the house, but have thankfully never been bed-bound, and happily I can now even manage days out.
  • Nausea and IBS symptoms.
  • Memory and concentration problems. Including not being able to read or not being able to remember/find words.
  • Palpitations (very scary).
  • Lack of body temperature control.
  • I’ve also suffered from depression alongside chronic fatigue.

From Raising Awareness of ME/CFS – Factor Fiction

“I am still largely stuck upstairs in my bedroom. Sitting upright for any length of time is still a huge challenge, so I still have to spend most of my time in bed. There are many, many days where I cannot use my laptop and my mobile phone is my only way to access the outside world; there are a lot of times that I’m too ill to text people and I have no contact with anyone outside my immediate family. I can still get very ill, very quickly and with little warning and ‘lose’ time because I’m only semi-conscious and unable to function. I have daily sinus and head pain, which greatly compounds the problems I have using the computer or any social interaction. My arms and legs feel like there is acid in my veins instead of blood, to the extent that wearing tights or jeans is becoming painful. There are still days where walking the few metres to the bathroom is a struggle because my body just doesn’t seem to work right and my legs won’t respond. I have constant brainfog, which makes concentration practically impossible and there are days where I achieve little more than getting dressed and watching some tv.”

From ME Awareness Week 2010 – Spirit of Phoenix

“* My overall health is currently about 60% of normal, but my symptoms fluctuate from day to day and sometimes within a day, so I can never make plans and expect to keep to them.

* On average I have to spend twelve hours of every twenty-four in bed – but not always the same twelve hours!

* On a good day I have the energy to walk for about two miles in the quiet countryside OR spend about an hour gardening OR dust and vacuum one room OR do about an hour’s shopping in the morning AND to do half an hour’s ironing in the evening – unless R’s out, in which case I have to do my own cooking INSTEAD.

* On a bad day I’d struggle just to walk a few yards across the road OR spend five minutes deadheading OR hang up a load of washing.

* On a really bad day it’s difficult for me to chew or swallow food – it’s been known for me to take an hour to get through one piece of toast.

* Some of my symptoms are constant, some are frequent, some are occasional. Most are mild, some are moderate, a couple are severe.”

From M.E. And Me – The Clockwork Dodo

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Dominique has been interviewed for a magazine article to co-incide with ME/CFS Awareness and writes about it on her blog:

“Ayo Olaniyan, who is the Founder and author of Discovering Purpose asked me to do the interview and write an article for his magazine a while ago.  When I asked Ayo if it would be possible to time the interview with May 12th as a tool to further awareness, he generously and excitedly agreed.

I am providing an excerpt of the interview here (with Ayo’s permission) and a link to the complete interview.  When you visit Ayo’s blog, please thank him for being so kind and willing to help us bring awareness to ‘living with CFS/ME…”

Read more including an extract from the article at A Determined Spirit: Dominique’s story of living with CFIDS

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“… please realize that by helping us, you may well be helping yourself.”

It’s a startling to think that anyone can get ME/CFS.  Michelle, from Behind the Surface, tells us about her own life with ME but also reminds us that this illness does not discriminate,

“… [ME/CFS Awareness Day is] intended to make people aware of the suffering of those of us who have had the bad luck to get this disease and to ask for your help in getting government attention and research funding. But this day is also to make you aware that you too could get this disease and lose much of the life you hold dear…”

Read the full post at Out of sight, out of mind

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