ME Awareness & Mental Health

Illustration showing mitochondria with expressions and a woman in bed with a low battery icon, representing energy depletion in ME/CFS. Designed for a blog post about Dr Paul Hwang’s research on mitochondrial dysfunction in Myalgic Encephalomyelitis.

Dr Paul Hwang and ME/CFS: A Glimmer of Hope in the Research World

Disability Rights & Awareness, ME Awareness & Mental Health, Myalgic Encephalomyelitis /

Dr Paul Hwang’s latest ME/CFS research offers new hope for those living with chronic fatigue. Discover how his unexpected findings on mitochondria and the WASF3 protein could reshape our understanding of energy production in Myalgic Encephalomyelitis—and why this matters for millions still waiting to be heard.

Dr Paul Hwang and ME/CFS: A Glimmer of Hope in the Research World Read More »

A sky-themed tribute image with soft blue clouds. White angel wings and a halo are illustrated near the top, with the words “Remembering Katarina Pavelek” written in elegant serif font. A small dove icon is in the top-left corner, symbolising peace and remembrance.

Remembering Katarina Pavelek: A Life Lost to ME

Life with Chronic Illness, ME Awareness & Mental Health /

Today, I’m remembering Katarina Pavelek — a fellow woman living with Myalgic Encephalomyelitis, whose light left this world far too soon.

Katarina made the incredibly difficult decision to end her life through assisted suicide after experiencing overwhelming illness and suffering. I’m not here to judge that choice — only to honour her, her life, and the love her friends shared for her.

Her story is heartbreaking, and it’s not the first time we’ve lost someone to this illness. ME is devastating. It takes so much from us — but please, if you are struggling, reach out. You are not alone.

To Katarina — you mattered. You were loved. You will be remembered. 💙

If you’re in crisis, please visit @nhsuk or reach out to someone. You deserve support.

Remembering Katarina Pavelek: A Life Lost to ME 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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