This is ME !

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When the sharpest words wanna cut me down

Im gonna send a flood, gonna drown them out

I am brave, I am bruised

I am who I’m meant to be , this is ME

Look out ’cause here I come

And I’m marching on to the beat I drum

I’m not scared to be seen

I make no apologies, this is ME

This year we are going to make the world sit up and listen , we are going to make them aware of us , we are not going to give them a choice!

We thought long and hard about how we could make a huge impact while allowing our whole community to get involved and this idea excited us. Just listen to the words, seriously just stop reading this and have a listen , its like it was made just for us.

Another round of bullets hit my skin

Well, fire away ’cause today’, I won’t let the shame sink in

We are bursting through the barricades

And Reaching for the sun (WE ARE WARRIORS)

Yeah thats what we’ve become

It’s about our story , it’s about how every single day we fight .

Every single one of us, we are WARRIORS , this illness has made us that way.

ME Awareness challenge

I want every single person in our community to get involved with this , I promise you that you can do it in your bed .

  • First download Tik Tok
  • Find This is ME from The Greatest Showman
  • Grant access to your camera and microphone
  • Press the big red button and mime along to the song.

Once you have filmed your video you click next , this will give you options to upload . Upload using the following hashtags #ThisisME #MEAwareness #peoplewithME

We are Warriors

We fight against our families, we hang on to our friendships and the lives that we once had. We butt heads with Drs and health professionals . We fight to keep our jobs, relationships and we shouldn’t have to. When someone asks what our illness is we should be able to say “I have ME” and that person should know it’s not a joke, they should know how hard our lives are.

Instead of not hearing from friends and family we should have the support network that we desperately need.

If some medical professionals can compare our illness to end stage cancers, then why the hell are we still having to fight against news articles that tell of people being miraculously cured by changing their diet or taking up running.

My husband and daughter should be getting messages asking if there is anything that they need or is there any way we can help. Instead of the “yeah don’t worry about it” that you get if you cant make an event , we should be being told that they understand and they mean it.

Every time we hear “Whats ME?” we educate that person . It doesn’t matter if that is a carer , our employer or a health professional. Every single day we fight .

The hardest part is losing someone from our community, we shouldn’t have an illness in 2019 that is killing people or being a cause of their death yet receives one of the lowest amounts of funding.

The CDC estimates that as many as 17-24 million people across the world suffer from ME/CFS. Some studies estimate the number to be closer to 30 million.

Please every single one of you if you have ME or a family member has ME then please join in. I need you to share this after you have done it to as many people as you know.

We need to get this to every single ME Sufferer , we need them to know that they aren’t alone anymore and that together we are going to do all we can to get people all over the world asking “What is ME”.

I want every news outlet worldwide asking what this challenge is all about. I want every person getting into work tomorrow asking about our community. I want Ellen & Oprah having this on their show this week. Its about time the world sat up and heard our story and I know that if we all join together to do this challenge, that tomorrow will be the start of the rest of our lives.

Just imagine for a minute if this challenge is viewed by a medical research student who decides that they are going to start researching ME . It only takes one person to start a chain reaction that could change our lives. So I beg you , every single one of you to join in with this.

Download Tik Tok now and mime or sing along to THIS IS ME and share it with every single person you know.

Share it to every social media platform that you are a part of. Use #ThisisME #MEAwareness #peoplewithME and tag 10 or 20 of your friend , if you are really cheeky tag Keala Settle , Zach Efron, Zendaya , Hugh Jackman or the song writers Pasek & Paul. I will let you all into a little secret , I might of already emailed the offices of Pasek & Paul and the agency listed as the booking agency for Keala Settle.

I would do anything if it changed our world forever. I don’t want to read of anyone else losing their life or not being able to go on with their life because of ME.

So I beg every single one of you to get involved by making a Tik Tok video and then sharing it with every single person that you can.

Please I beg you.

ME has to stop.

We want our lives back, We deserve our lives back.

#ThisisME

#MEAwareness

#peoplewithME

Related Posts

What is Myalgic Encephalomyelitis

According to the NHS Website, Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness

For more information please visit https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:

  • Can be severe.
  • Is not a result of unusually difficult activity.
  • Is not relieved by sleep or rest.
  • Was not a problem before becoming ill (not life-long)

Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM).

Sleep problems.

Many but not all people with ME/CFS have other symptoms.

Pain is very common in people with ME/CFS. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with ME/CFS feel is not caused by an injury. The most common types of pain in ME/CFS are:

  • Muscle pain and aches
  • Joint pain without swelling or redness
  • Headaches, either new or worsening

Some people with ME/CFS may also have:

  • Tender lymph nodes in the neck or armpits
  • A sore throat that happens often
  • Digestive issues, like irritable bowel syndrome
  • Chills and night sweats
  • Allergies and sensitivities to foods, odors, chemicals, light, or noise
  • Muscle weakness
  • Shortness of breath
  • Irregular heartbeat
Information is taken from The CDC Website https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms

Myalgic Encephalomyelitis does not have a cure.

Find a Dr or Consultant who listens to you is the first step

It is a manageable condition and depending on the severity of your symptoms the more difficult this can become.

I advise learning to listen to your body and what it is telling you. If you feel tired rest and if you feel pain find a solution to reduce that pain, this could be through pain medication prescribed by your Dr.

I am not saying that finding a Dr who listens or listening to your body is going to be easy as this illness is incredibly complex for some and manageable for others.

Having a Dr who listens to you or reads about the latest drug that sufferers are recommending can take a lot of unnecessary stress and anxiety from the sufferer.

It would be best for me to point you to the above question What is Myalgic Encephalomyelitis? 

Most pages list the illness as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or sometimes even Systemic exertion intolerance disease (SEID).

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