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By special request I’ve added a new awareness badge en francais:

EM/SFC
&
Fibromyalgie
le 12 mai
Journée Internationale de sensibilisation

<a href="https://meaware.wordpress.com"><img title="me_and_cfs francais" src="https://meaware.files.wordpress.com/2009/03/me_and_cfs-francais.jpg" alt="" width="329" height="329" />
</a>

https://meaware.wordpress.com/badges/#enfrancais

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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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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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So you might be thinking “Why another awareness day? I’m aware it exists, what’s the big deal?” says Joey at Newly Nerfed who goes on to explain why awareness for ME/CFS is so important:

“Not only is it poorly understood and often misdiagnosed in the medical community, being something of a “trashcan diagnosis,” but that lack of understanding is far, far worse among the general public. Patients are still fighting off the terrible moniker of “yuppie flu” with which we’ve been stigmatized for decades, and in some cases they are fighting even to be recognized as ill at all …”

“Without the impetus that non-invisible illnesses gain in terms of research funding as well as patient support, ME/CFS remains a mystery. That is of course its defining trait — we patients are, all of us, medical mysteries ..”

Read Joey’s full post at Why another awareness day?

 

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Indigo Shirl is sharing her ME story to raise awareness for ME/CFS and Fibromyalgia

“My story, like many others with ME, is one of exhaustion, pain, blurry vision, loss of memory, “cotton wool” head, disturbed balance, constant headache, depression and many other symptoms.

My ME happened at a time when most doctors were sceptical that the illness even existed, thankfully those days are a thing of the past (in most doctors surgeries), but for me there was no help available except medication for depression which I decided wouldn’t help me in the long run…”

Read her full post at Today is International ME/CFS and Fibromyalgia Awareness Day

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For ME Awareness Jane shares a poem on her blog which although she wrote in 1997 still unfortunately applies today in 2010.

Here is a just the start of the poem:

“The Difficult Road of M.E.

M.E is an illness,
That defies all belief,
Searching for a cause
And just a little relief.
Putting on a cheery face,
Trying to show you cope,
When you’re dying inside,
Desperate for hope. …”

Read Jane’s poem in full ME Awareness

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The 12th May is International ME/CFS and Fibromyalgia Awareness Day. During the month of May bloggers are joining together to help raise awareness and on this blog I’m collating a central list of all their posts.

Their approaches and subjects may vary but the one thing they have in common is wanting to get a message to you.

We have some wonderful posts for you to read …

BLOG POSTS FOR 2010 ME/CFS AWARENESS

During May 2010 new blog posts will be added here in chronological order:

PARTICIPANTS 2010

This is a copy of the lists on the Participants page

See Archive for Participants 2008-2009

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