Celebrations & Traditions

Celebrations & Traditions

A cheerful illustrated graphic featuring people of all abilities in colourful animal-themed pyjamas dancing together. Text reads: “Join us in your PJs on ME Awareness Week and on Severe ME Day – ME Pyjama Party. Take a picture in your PJs. Post it using #MEPJParty. Help us make a difference in 2025.

Uniting for change: The ME Pyjama Party Movement

Awareness Content, Celebrations & Traditions, Chronic Illness, Concerts & Events, Life with Chronic Illness /

In the realm of chronic illnesses, Myalgic Encephalomyelitis (ME) stands as a formidable challenge, affecting millions worldwide. Despite the invisible nature of the illness, its impact is profound and pervasive, leaving many individuals bedridden and isolated.

However, amidst the struggle, a beacon of hope shines bright: Our ME Pyjama Party.

Uniting for change: The ME Pyjama Party Movement Read More »

Black Labrador puppy wearing a red Santa hat sits in the snow next to a smiling snowman with a scarf and hat, surrounded by snowy trees and festive string lights, with the text "Merry Christmas!" in bold red font.

Struggling with Christmas and ME? You’re Not Alone 💙

Celebrations & Traditions, Life with Chronic Illness /

Christmas used to mean laughter, lights, and being surrounded by the people I love. But since being diagnosed with Myalgic Encephalomyelitis, the festive season has become one of the hardest times of the year. While the world celebrates, many of us are left in the shadows—alone, in pain, and unseen.

If this Christmas feels more like survival than celebration, please know this: you are not alone. I see you. I understand. And if you need someone to talk to, I’m just a message away.

Struggling with Christmas and ME? You’re Not Alone 💙 Read More »

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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