ME Carer Community

We strive to raise awareness and provide support for individuals living with Myalgic Encephalomyelitis.

Through advocacy and community outreach, we aim to educate the public, foster understanding, and create a compassionate environment for those affected this includes friends and family of those affected .

We know first hand that this illness affects your family as a whole which is why we are here to offer support and guidance on this incredibly  challenging journey.

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.
A proud father and his daughter at her graduation ceremony. The young woman is wearing a graduation cap and gown over an elegant green dress, holding a silver handbag, and smiling brightly. The man, dressed in a smart dark suit with a striped tie and black coat, stands beside her with a warm expression. The background shows other graduates and guests in a grand hall with ornate ceiling details and patterned carpet.

Family 

My family is my heart and my strength. They are the reason I keep pushing forward, even on the toughest days.

My Husband Graham is my rock, always by my side with unwavering support and love. My Daughter Rebecca is my light, inspiring me every day with her resilience and kindness. And then there are my two loyal companions, Alfie and Archie – my beloved Labradors who never fail to bring comfort and joy, even in my darkest moments. They remind me that love is the most powerful medicine.

My family isn’t just my support system; they are my reason for fighting, my motivation for every dream I chase, and the anchor that keeps me grounded.

The ME Carer Community

Caring for someone with Myalgic Encephalomyelitis (ME) is a journey that comes with both love and challenges. It is an experience that only those who live it every day truly understand. That’s why The ME Carer Community exists—to provide a safe, supportive space where carers, family members, and friends of people with ME can connect, share their experiences, and find comfort in knowing they are not alone.

Why This Community Matters

Caring for someone with a severe, life-altering illness like ME can often feel isolating. Friends and family may not always understand the daily struggles, and the emotional weight can be overwhelming. But research has shown that sharing experiences and seeking peer support can make an immense difference:

  • Studies indicate that peer support significantly reduces stress and burnout among carers, improving emotional well-being.
  • 70% of carers report that having a support network helps them feel less isolated.
  • Shared experiences build resilience, making it easier to navigate the emotional and practical challenges of caregiving.

At The ME Carer Community, we want to create a space where you can:

✅ Find support from others who truly understand what it means to care for someone with ME.
✅ Share your experiences in a safe, non-judgmental environment.
✅ Access helpful resources and practical advice on navigating daily life.
✅ Make friends with people who “just get it.”

A Community Built by Those Who Understand

Our family knows firsthand what it’s like to live with and support someone with ME. This group isn’t just another online forum—it’s a heartfelt project run by people who deeply understand the reality of ME caregiving. We believe that by standing together, we can lighten the burden, empower each other, and make this journey a little easier.

Join us and be part of a community that truly cares. 💙

Prevalence of Myalgic Encephalomyelitis (ME):

Impact of ME on Employment:

  • A study involving 1,991 patients found that 50.1% had discontinued their employment due to fatigue-related symptoms associated with ME/CFS. ​PMC

Benefits of Peer Support for Carers:

  • Peer support interventions are associated with increased well-being and quality of life outcomes for parents and caregivers, supporting current practices. ​onlinelibrary.wiley.com+1ResearchGate+1

Health Challenges Among Caregivers:

  • Caregivers were more likely than noncaregivers to smoke during both periods. ​cdc.gov

  • The prevalence of frequent mental distress increased among caregivers from 2015–2016 to 2021–2022. ​cdc.gov

  • The prevalence of lifetime diagnosed depression increased from 2015–2016 to 2021–2022 for caregivers. ​cdc.gov

These statistics highlight the widespread impact of ME and the critical importance of support networks for both patients and their carers. 

Sources
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A black Labrador wearing red and white striped pyjamas lies on a bed, gazing softly into the camera. His expression is calm yet soulful. The text overlay reads: "My Nanny started The ME Pyjama Party to raise awareness of Myalgic Encephalomyelitis, an illness which destroyed her life." The background is a cosy bedroom setting, reinforcing the message of comfort and support

Join & Support The ME Carer Community

Caring for someone with Myalgic Encephalomyelitis (ME) can be isolating, exhausting, and emotionally challenging. But you don’t have to do it alone. The ME Carer Community is a safe space where carers, family members, and friends of people with ME can connect, share experiences, and find the support they need.

Why This Community Matters

ME is one of the most misunderstood chronic illnesses, and many carers struggle with a lack of awareness and support. By following Alishas personal journey and engaging with this community, you can gain a deeper understanding of what living with ME is really like.

Through this content, I share:
✔ Real-life experiences of what it’s like to live with and care for someone with ME.
✔ Practical advice for carers on navigating daily challenges.
✔ Educational content to help friends and family understand the severity of this illness.
✔ Advocacy work to push for better recognition and support for those with ME and their carers.

By learning more, sharing our stories, and supporting each other, we can break the silence and build a stronger, more informed community.

How You Can Get Involved

🌍 Become Part of the Community
Join our growing network of carers who understand the daily reality of ME caregiving. Whether you’re looking for advice, emotional support, or simply a place to share your story, this space is for you.

💬 Engage on Social Media
Help us support carers and raise awareness about the impact of ME.
📲 Follow us on

Facebook

ME Carer Community on Facebook

Instagram

ME Carer Community on Instagram

📢 Use hashtags like #MECarerCommunity, #MECareSupport, and #CarersMatter to help us to spread awareness.

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 2025!

✨ Get Comfy. Raise Awareness. Make a Difference. ✨

The ME Pyjama Party is back for 2025, and we want YOU to be part of it! This fun, inclusive awareness campaign shines a light on Myalgic Encephalomyelitis (ME)—a severely misunderstood and debilitating illness affecting over 250,000 people in the UK alone.

Many people with ME spend most—or even all—of their lives in bed due to extreme exhaustion, pain, and sensory sensitivities. By wearing your pyjamas and sharing your support online, you can help raise awareness and stand in solidarity with those living with this invisible illness.

How to Get Involved

Taking part in the ME Pyjama Party is simple! Here’s how you can make a difference:

1️⃣ Wear Your Pyjamas for the Day

Whether you’re at home, at work (if allowed!), or even out and about, put on your PJs to start a conversation about ME.

2️⃣ Post a Selfie with #MEPyjamaParty

Snap a photo or video in your pyjamas and share it on social media using:
📢 #MEPyjamaParty | #MEAwareness | #CanYouSeeMEnow
💙 Tag us so we can share your post!

3️⃣ Create a Video

Share why you’re taking part and what ME awareness means to you.

  • If you have a personal connection to ME, this is a powerful way to spread awareness.
  • Let’s educate and inspire more people to learn about ME!

4️⃣ Get Your Friends & Family Involved

The more people who join, the greater the impact we can make!
🏡 Encourage your family, workplace, or local community to take part.

5️⃣ Spread the Word

If you’re a content creator, blogger, or part of an organisation, we’d love to collaborate!
📩 Get in touch with us to help amplify the message.

Why Pyjamas?

For most people, pyjamas are a symbol of relaxation and comfort. But for many people with ME, they represent a life spent in bed due to extreme fatigue, pain, and mobility limitations.

🛏 Did You Know?

  • 1 in 4 people with ME are severely affected and may be bedridden for months or years.
  • ME is a leading cause of long-term disability, yet it remains one of the least understood chronic illnesses.
  • Many carers and family members feel isolated due to the lack of awareness and support.

💙 By wearing your pyjamas and raising awareness, you’re showing the world that people with ME deserve to be seen, heard, and understood.

Get Involved!

📅 Dates: 12th May 2025 for ME Awareness week  & 8th August 2025 for Severe ME Day
📍 Where: Anywhere—you can take part from home!
📲 Follow us for updates:

Facebook

https://www.facebook.com/MEPJParty

Twitter 

https://twitter.com/mepyjamaparty/

Instagram 

https://instagram.com/mepjparty

🔹 Let’s turn pyjamas into a powerful awareness movement!

 

making a difference

Get in touch
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

A digital illustration of Alisha Whittam lying on a bed, smiling alongside her two black Labradors, Alfie and Archie. One dog is sitting happily while the other is sleeping. The image features the Alisha Whittam YouTube branding in the corner

My Youtube Channel

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

Follow Alisha on Instagram

A woman with fair skin and dark hair pulled back, standing in a bathroom. Her face is visibly swollen, particularly her lips and cheeks, with redness on her skin. She has a concerned expression, and the text overlay reads, 'But they just kept getting bigger.
Black Labrador puppy looks inquisitively
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.
A black and white close-up of a young black Labrador puppy named Archie, resting on a soft blanket while gently chewing a toy. The image features soft lighting and a cosy atmosphere. The text "Baby Archie" is elegantly written in a pastel purple cursive font in the top right corner.

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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