Myalgic Encephalomyelitis

Graphic with bold title “IMPORTANT – I Need Your Help!” asking people with Myalgic Encephalomyelitis (ME) in Liverpool, Southport, Wirral, and Chester to share their experiences. Includes an email address for contact and illustrations of a megaphone and a woman in a wheelchair holding a flag.

Calling All ME/CFS Sufferers in Liverpool & Surrounding Areas: Your Voice Is Needed!

Accessibility & Advocacy, Life with Chronic Illness, Myalgic Encephalomyelitis /

Are you living with Myalgic Encephalomyelitis (ME/CFS) in Liverpool, Southport, Wirral, or Chester? I’m collecting personal stories to highlight the gaps in care across Merseyside and push for better support. This is a confidential, community-led project — your voice could help drive real change.

Calling All ME/CFS Sufferers in Liverpool & Surrounding Areas: Your Voice Is Needed! Read More »

Pink figure sitting with arms wrapped around knees next to the words “You are not alone in this” on a purple background — offering comfort and solidarity for those living with chronic illness or mental health struggles.

It’s Not Just Tiredness – Living with Severe Myalgic Encephalomyelitis

Chronic Illness, Disability Rights & Awareness, Life with Chronic Illness, Myalgic Encephalomyelitis /

t’s not just tiredness. It’s the kind of exhaustion that steals your ability to move, speak, or even think clearly. Myalgic Encephalomyelitis has taken so much from me — but I’m still here, sharing my truth in the hope that someone else feels a little less alone. This is what life with Severe ME really looks like

It’s Not Just Tiredness – Living with Severe Myalgic Encephalomyelitis Read More »

Three illustrated people protest against false medical claims, with text reading "Ear Seeds Do Not Cure Myalgic Encephalomyelitis" and symbols of rejection like ‘NO’ signs, stop hands, and protest icons.

The Truth About Myalgic Encephalomyelitis and Ear Seeds: Why Dragons’ Den Got It So Wrong

Accessibility & Advocacy, Disability Rights & Awareness, Life with Chronic Illness, Myalgic Encephalomyelitis /

A recent Dragons’ Den episode pitched ear seeds as a cure for Myalgic Encephalomyelitis—an illness I live with every day. Here’s why that claim is not only wrong, but dangerous. Let’s raise awareness, push for better education, and demand accurate health information in the media.

The Truth About Myalgic Encephalomyelitis and Ear Seeds: Why Dragons’ Den Got It So Wrong 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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