Myalgic Encephalomyelitis Symptoms

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/

A digital illustration depicting the struggles of living with Myalgic Encephalomyelitis (ME). A person lies in bed with a drained expression, covered by a blanket, while a wheelchair sits beside them. Above them, a shadowy head filled with swirling thoughts, question marks, and negative imagery represents cognitive dysfunction, fatigue, and brain fog. Words and icons around the image highlight symptoms like pain, fatigue, sleep disturbance, muscle weakness, daily medication, and memory issues. A low battery symbol and a "I CAN'T REMEMBER" box emphasize the exhaustion and cognitive challenges associated with ME

What is Myalgic Encephalomyelitis or Chronic Fatigue Syndrome ?

CFS is also known as ME, which stands for Myalgic Encephalomyelitis. There’s some debate over the correct term to use for the condition, but these pages will refer to it as Myalgic Encephalomyelitis or CFS/ME.

CFS/ME can affect anyone, including children. It’s more common in women and tends to develop between your mid-20s and mid-40s. Living with Myalgic Encephalomyelitis symptoms differs from sufferer to sufferer, some may still be able to work while others may be living with an NG tube to feed them.

My Life with ME

This journey taught me the power of resilience and I hope that by sharing my experiences good and bad I can raise awareness and offer support to those facing similar challenges.

In my studio ( my bed ); I’ve discovered new ways to express myself creatively and I am so proud of the new skills that I have been able to learn along the way including, website design, graphic design, crafting, videography and photography.

To make a difference, I am educating myself to utilise social media and digital platforms as a way to empower my voice for education, raising awareness and building a community of Myalgic Encephalomyelitis sufferers locally as well as around the world.

A digital illustration titled 'Things That Help Me Feel Better on a Bad ME Day.' It features six comforting activities represented by cute illustrations: taking a bath (a woman in a tub), wearing clean pyjamas (a person in blue PJs), warming up with cozy socks, getting lots of rest (a comfy bed), getting comfortable (pillows), and cuddling a black Labrador (Alfie). The background has soft clouds, and the design has a warm and calming aesthetic

Myalgic Encephalomyelitis Symptoms

I describe ME as the worst Flu you could ever have, living Myalgic Encephalomyelitis symptoms is like the type of Flu that hurts every single part of your body. It even hurts my toenails and the hair on my head, It feels like being head sore from being out in the sun too long but it doesn’t go away no matter what you take or how many days pass. If I get cold and get goosebumps the pain from shivering will leave me crying due to the pain. I haven’t even really got into it yet!

You have problems sleeping, yet you can’t stay awake. No matter how long you are asleep it will never be enough. ME sufferers have poor-quality sleep that doesn’t help with the exhaustion you feel. Its medical term is non-restorative sleep, this means that no matter how many hours a day I sleep, I will never wake up feeling rested and as you can imagine living with very little sleep and extreme pain isn’t the recipe for a happy life.

Muscle Weakness

Nausea

Headaches

Sensitivities

Sore Throats

Post exertial malaise

Difficulty remembering 

Difficulty thinking

 Intermittent paralysis

Unable to tolerate light or sounds

Tinnitus

Difficulty walking

Joint Pain

Feeling dizzy

Heart palpitations 

General Malaise

Muscle cramps

Twitching Muscles

Hypersomnia

Reduced attention span

Sweating

Stomach cramps 

Excessive wind

Painful lymph nodes

Double vision

What should you do if you suspect you could have Myalgic Encephalomyelitis?

It isn’t easy or quick to be diagnosed with ME so be prepared to be living with your Myalgic Encephalomyelitis symptoms for a while before your official diagnosis as your Dr must conduct tests for illnesses that have similar symptoms so that they can be excluded first this includes things like thyroid problems or Iron deficiency.

Your Dr will conduct blood and urine tests as well as a complete physical and questions to assess your mental health. As each test is excluded your Dr will be putting together a full picture that in most cases will then be sent across to a specialist ME team. (Some areas do treat ME cases differently)

To reach a diagnosis of ME your Dr has to rule out all other illnesses and you have to be suffering from Myalgic Encephalomyelitis symptoms for at least a minimum of 4 months.

Help is Available 

There are several charities dedicated to supporting people with Myalgic Encephalomyelitis (ME), offering vital resources and advocacy to improve the lives of those affected.
These organisations provide essential information about the illness, helping patients and their families better understand and manage the complex symptoms.

They offer support networks, connecting individuals with others who share similar experiences, which can be a lifeline for those feeling isolated. Additionally, many of these charities work tirelessly to raise awareness about ME, challenging misconceptions and promoting a greater understanding within the medical community and society at large.

They also contribute to research efforts, advocating for increased funding and better healthcare services to enhance diagnosis, treatment, and overall quality of life for people living with ME.

If you ever need help or just someone to talk to please reach out to me via any of my social media profiles below.

The logo of The ME Association, a UK-based charity supporting people with Myalgic Encephalomyelitis (ME). The logo has a bold purple square background with rounded edges. Inside, "the ME association" is written in white text, with "ME" prominently displayed in large lowercase letters
The logo of #MEAction, an advocacy organisation for people with Myalgic Encephalomyelitis (ME). The design features a bold red circular background with the words "#ME ACTION" in white, uppercase letters, symbolising activism and urgency in the fight for ME awareness and research.
The logo of ME Research UK, a charity dedicated to funding biomedical research into Myalgic Encephalomyelitis (ME). The logo features a bold blue semi-circle with the letters ME prominently displayed in white. Below, the words RESEARCH UK are written in black uppercase letters
The logo of Action for M.E., a UK-based charity supporting people with Myalgic Encephalomyelitis (ME). The logo features the words "action for m-e" in lowercase grey and orange text. Above the text, there is a dynamic, wavy ribbon-like design in shades of orange, yellow, and green

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A woman with light skin, dark hair pulled back, and a tired expression makes a slightly lopsided face, showing exhaustion. She is wearing a dark-colored top with a festive pattern. The background features a light-colored shower curtain with subtle animal illustrations. Overlaid text reads: 'Tonight I pushed myself by making a phone call.
Two black Labrador dogs wearing matching Christmas-themed pyjamas featuring festive golden retrievers and Santa hats, playfully moving around a cozy indoor setting
Two black Labradors sitting attentively on a bed, staring at a McDonald's meal with longing eyes. The image includes the text "We call this the Labrador TAX" along with a piggy bank graphic labeled "TAX.
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An illustrated poster promoting the ME Pyjama Party, featuring diverse characters in fun animal onesies and pyjamas. The text encourages people to wear PJs for ME Awareness Week and Severe ME Day, sharing photos on social media using #MEPJPARTY

The ME Pyjama Party

Get comfy for a cause! The ME Pyjama Party is a powerful yet simple way to raise awareness for Myalgic Encephalomyelitis (ME). During ME Awareness Week and Severe ME Day, we’re inviting you to wear your pyjamas in solidarity with those who are bed-bound due to this debilitating illness. How to Join: ✔ Take a picture in your PJs ✔ Post it on social media using #MEPJPARTY ✔ Tag friends & spread the message!

An illustrated image of a diverse group of family members and caregivers sitting together, representing the Myalgic Encephalomyelitis Carer Community. The text above them highlights the supportive network for those caring for ME sufferers.

Myalgic Encephalomyelitis Carer Community

Caring for someone with Myalgic Encephalomyelitis (ME) can be challenging, but you are not alone. 💙 Join the ME Carer Community—a safe space for support, advice, and connection. Let's uplift one another. 🤝 #MECarers #ChronicIllnessSupport #YouAreNotAlone

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Welcome to my world! 💙 Join me, Alfie & Archie, as we navigate life with Myalgic Encephalomyelitis, share our favourite moments, and spread positivity. Subscribe for real-life stories, disability awareness, and lots of dog love! 🐶✨ #AlishaWhittam #LifeWithME #BlackLabs

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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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