Daily Life with Disability

Daily Life with Disability

A tribute image featuring a serene blue sky with white clouds, angel wings, a halo, and the name "Maeve Boothby-O’Neill" in elegant lettering, honouring the memory of a Myalgic Encephalomyelitis sufferer

ME Matters: A Tragic Loss & the Urgent Need for Change

Daily Life with Disability, Life with Chronic Illness /

💔 Maeve Boothby-O’Neill’s tragic passing at just 27 highlights the urgent need for change in the care of ME patients. Despite multiple hospital admissions, Maeve was failed by a system that lacked the specialised care she desperately needed. Her story is not an isolated incident—it’s a wake-up call.

This post explores the failures of our healthcare system, the stigma surrounding ME, and the urgent reforms needed to prevent more lives from being lost. Maeve’s death must not be in vain. It’s time for real change.

📖 Read more & join the fight for better ME care.

ME Matters: A Tragic Loss & the Urgent Need for Change Read More »

A fun and colourful digital illustration promoting the ME Pyjama Party for ME Awareness Week and Severe ME Day. The design features a large, sleepy bear in blue-striped pyjamas and a nightcap, stretching with a yawn. Surrounding the bear are six people dressed in various animal onesies, including a dragon, panda, giraffe, bear, unicorn, and a blue starry suit. The border is decorated with vibrant watercolour balloons in pink, blue, green, and yellow. The text reads: "Join us in your PJs for ME Awareness Week & Severe ME Day - ME Pyjama Party

Join the ME Pyjama Party and Raise Awareness for Myalgic Encephalomyelitis!

Daily Life with Disability, Life with Chronic Illness /

Join the ME Pyjama Party! 💙

Each year, during ME Awareness Week (May) and Severe ME Day (August), we wear pyjamas to raise awareness for Myalgic Encephalomyelitis (ME/CFS).

How to join:
🛏️ Wear your PJs
📸 Take a picture
📲 Post on social media with #MEPJParty

Help shine a light on this often misunderstood illness. Every post makes a difference!

#SevereMEDay #MECFS #InvisibleIllness #ChronicIllnessAwareness

Join the ME Pyjama Party and Raise Awareness for Myalgic Encephalomyelitis! 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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