The ME Pyjama Party

Join in with The ME Pyjama Party and Raise Awareness for Myalgic Encephalomyelitis!

Hello everyone,

I’m thrilled to invite you to a special event that aims to make a significant impact in the lives of those living with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). Today, Friday, May 17th, 2024, we are hosting the ME Pyjama Party to raise awareness and support for the ME community. And guess what? Participating is as easy as putting on your comfiest pyjamas!

How to Participate

All you need to do to join the ME Pyjama Party is:

  1. Put on your PJs: It doesn’t matter what colour or if you have had them on all week , it’s time the world gets to see the real face of ME.
  2. Take a picture: Snap a photo of yourself in your PJs.
  3. Post on social media: Share your picture on your favorite social media platforms using the hashtag #MEPJParty.

Why Your Participation Matters

Every voice counts, and every action matters. By joining us and sharing your PJ pics, you are helping to shed light on the daily challenges faced by those living with ME/CFS. This condition is often misunderstood and under-recognized, leading to a lack of adequate support and research funding. Your participation can help change that.

The Impact of Awareness

Raising awareness about ME/CFS is crucial for several reasons:

  • Increased Understanding: Greater awareness leads to better understanding and empathy from the public, which can reduce the stigma associated with the condition.
  • Advocacy for Research: Highlighting the challenges of ME/CFS can push for more funding and research into treatments and potentially a cure.
  • Support and Solidarity: Seeing a community rallying together can provide immense emotional support to those affected by ME/CFS, showing them they are not alone in their battle.

Join Our Event Page

Stay connected and see how others are participating by joining our event page on Facebook: ME Pyjama Party Event. Here, you can share your photos, engage with others, and learn more about ME/CFS.

Spread the Word

Let’s create a ripple of awareness that can lead to real change. Encourage your friends, family, and followers to join the ME Pyjama Party. The more people we reach, the greater our impact will be. Use and follow the hashtags: #MEPJParty, #MECFS, #MyalgicEncephalomyelitis, #CFS to see all the amazing contributions and to keep the conversation going.

Thank You for Your Support

Your support means the world to the ME community. Together, we can advocate for greater understanding, more research, and better support systems for those living with this debilitating condition. Let’s unite in our pyjamas and show that we care.

Thank you for being a part of this important cause. I can’t wait to see all of your wonderful PJ pics!

Warm regards,

Alisha 💙

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Alisha

Proud Wife, Mother and Nanna . We married 19 years ago in Rome, Italy surrounded by our friends and family. We have the most beautiful, caring, considerate daughter, she makes us proud every single day. I am nan to Alfie, our Black Labrador and he is my best friend in all the world, I love how he understands that just laying next to me is all I need on a bad day and on a good day well it is cuddles and kisses galore. Liverpool born & bred, I never had enough guts to ever move away. Maybe it’s on my cards in the future. I have an illness that has destroyed my life, that illness has led me to blog my life with no filter. I put everything into raising awareness of Myalgic Encephalomyelitis and I would do anything to make sure no one else has to feel the way that I do. We have fun in our little home and I do anything to make my family happy. Love meeting new people over the web and hearing their stories. I Love making new friends and just trying to make a difference in this world.
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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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