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Can You #SpeakForME? Here’s how…

Have you ever felt great fatigue or bone-deep tiredness? A kind of malaise that no matter how hard you try, you can’t get out of bed or do anything for yourself?

I am sure we have all felt tired in one way or another. But what if I tell you to imagine the worst fatigue you have ever felt, multiply it by 10 times, and see yourself experiencing that kind of chronic fatigue 24 hours a day, 7 days a week?

bed

This is the reality that people with Myalgic Encephalomyelitis or M.E. confront every single day. And the thing is, this can become your reality too. Or that of your friends and loved ones.

Unfortunately, M.E., also called Chronic Fatigue Syndrome (CFS),  is not getting  enough medical attention and often dismissed even within the medical profession. The Guardian reports that this has resulted in many people suffering in silence and dying from the condition. In particular, Wales Online notes that Wales is lagging behind in terms of providing patient support.  This inaction is brutally described in this video:

With M.E. sufferers bound to their beds and powerless to speak for themselves, the M.E. Support in Glamorgan (MESiG), a charity supporting patients with the condition, launched #SpeakForME. This campaign seeks your help in calling for intensive research on the condition and proper care of M.E. sufferers.

How can you help? Here are five simple steps you can follow:

Step 1: Know and understand the disease. 

There are currently a lot of information about the condition available on the Internet. We call on you to educate yourself about M.E. The National Health Service provides a wealth of information on the disease.

Step 2: Participate in activities that amplify attention on the condition. 

Last year, MESiG put pairs of shoes on the steps of the Senedd to highlight the “missing people” suffering from the disease.

senedd

Photo Credit: Julie Morgan @juliemorganLAB

M.E. Awareness Week is fast coming up on 11-17 May this year. Check out the website of MESiG for upcoming activities that you can support and participate in.

Step 3: Join online discussions, sign petitions. 

Actively seek out online discussions on M.E. Participate, ask questions, engage with others, share with friends and families. These simple actions can hopefully lead to a snowball effect that will get others talking, thinking and advocating for M.E. research and treatment.

Step 4: Speak to your GP or any member of the medical community. 

doctor

As the video and The Guardian article suggests, the inaction of the medical community has led to patient suffering and loss of lives. If you can, talk about M.E. to your GP, your nurse neighbour or a medical student you know. Engage as many people as possible in the medical profession on the condition. Who knows, it may be a good learning session for both of you!

Step 5: Support fundraising activities for advocacy and research.

Advocacy work requires consistent effort. And this needs financial resources. Help out charities like MESiG continue their work by supporting their fundraising activities. On 13 May,  MESiG will be holding a concert to raise funds for their advocacy work. Check the MESiG website regularly for updates on this event!

All these are simple activities that when done by several well-meaning persons like yourself, can do a lot towards generating attention for M.E.

Together, let us #SpeakForME.

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Heading off to watch Beauty and the Beast?

After months of waiting, the live-action adaptation of Disney’s Beauty and the Beast is finally showing in cinemas. Moviegoers are expected to troop to Cardiff cinemas this weekend, especially families with young kids.

beauty

Of course, who wouldn’t right? It’s the ultimate tale as old as time after all!

Unfortunately, there are a number of people who will not be able to watch this highly anticipated movie. And it’s not because they don’t like it. They just simply can’t.

Sian (not her real name) was ten years old when she watched the 1991 Disney animated version. “She absolutely loved it,” her mom recalls. “I still remember the day we brought her to the cinema. She had a fantastic time.”

Now at 25, Sian will not be able to watch the live-action remake of her beloved Disney movie. She stays in her room all the time, unable to get up from bed. She suffers from extreme Myalgic Encephalomyelitis or M.E.

The UK National Institute for Health and Care Excellence says that M.E., also called Chronic Fatigue Syndrome (CFS), is characterised by debilitating tiredness that is unlike everyday fatigue and can be triggered by minimal activity. According to the National Health Service, 250,000 British nationals are suffering from the disease. Globally, 17 million people are afflicted with the illness.

Sian and other M.E. sufferers like her are oftentimes called the “missing people.” This is because they miss out on life and experiences. They spend days, weeks, months in bed due to long-term fatigue, unable to do things on their own.

invisible

“My daughter has always been an active person. She excelled in sports, got good grades and had a lot of friends. But M.E. slowly drained her zest for life,” Sian’s mom recounts. “Unexplained fatigue slowly overcame her and now she seems like a vegetable.”

While the disease has been recognized by the World Health Organisation, its exact cause is still unknown. What is known is that it can happen to ANYONE  — to you or to your loved ones. It is that scary.

Compounding the problem for M.E. patients is the lack of support in terms of research and health care. This is because the health sector seems divided on the issue. TED Fellow Jennifer Bree narrates in the video below her struggles in seeking treatment for her condition.

Evidence shows that it is possible for M.E. patients to recover from the illness. What is needed is an appropriate treatment plan and care. Dr. Charles Shepherd, a medical adviser of the M.E. Association, calls on doctors to listen to their patients and stop trivialising the disease. He also firmly believes in increased investment in biomedical research to develop needed treatments.

However, with most M.E. patients confined to their beds and incapable of speaking up for themselves, who can help amplify their silent cries for help?

Are you willing to help? Are you willing to give your time to #SpeakForME?

M.E. patients are counting on you to be their voice. Read up on the illness, advocate for its treatment, join fundraising activities!

After all, M.E. patients simply want to be as able as you are. With the freedom to walk, run and enjoy life to the fullest… As Belle said:

I want adventure in the great wide somewhere.

Engage and let me know your thoughts on how you can help M.E. patients in your own way…

Understanding M.E./Chronic Fatigue Syndrome

When I first encountered people who have Myalgic encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS), it hit me hard.

woman

I heard stories and struggles of at least three people who stood up on a makeshift podium at the Bethel Church Community Centre. At the end of the gathering of M.E sufferers and carers, I got to talk to a couple more who were very willing to share their stories to people like me who were there to listen and understand their suffering.

I was floored. Absolutely. From what I gathered, the disease can happen to just about anyone.

There was a mother who talked about a very active daughter who one day just got a fever, developed M.E. and never recovered from it. She has been bedbound now for about 20 years.  There was this man who was a member of a motorcycle club and used to go cruising with his buddies every weekend. He had an accident, developed M.E. and after six years is still trying to get his life back. And there is this beautiful young lady, at the prime of her life, who simply blacked out one day due to the stress of studying. Five years later, she is still regularly experiencing nausea and sensitivity to light while trying to recover from the illness.

Their stories are very different from each other. They got the illness through different ways. But they all exhibited the same symptoms of extreme fatigue, sometimes muscular or joint pains, headaches, stomach pains, sensitivity to light, sleep problems, depression, dizziness and so on.

depress

The thing is, the cause of M.E. has not been thoroughly researched on. The National Health Service suggests possible causes:

  • problems with the immune system
  • hormone imbalance
  • psychiatric problems
  • genes
  • traumatic events

But why do these causes lead to M.E.? Some people can have these problems and not be afflicted with the illness. Some can seemingly not exhibit any of these issues and develop M.E. I believe we should all try to understand this disease, to help patients and carers. And most importantly, so we know what to do in case this illness affects us, our families and friends.

Do you think we should all take the time to understand the disease? Let me know your thoughts!