Parliament

This could make a huge difference to ME Sufferers, so please help in any way you can .

I ask every single one of you to read this, please .

A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30pm. The fight for a larger debate on ME has support across parties with MP Carol Monaghan (SNP) securing the debate, along with the support of five other MPs.

This is a tremendous achievement in itself all we need to do is ensure every other MP attends to listen to our cause .

ME Action have developed a tool which allows you to enter your postcode and the tool will do the rest.

https://www.meaction.net/2018/06/08/westminster-hall-debate/

We need every single one of you to urge your MP to both attend the Westminster Hall debate, and review the parliamentary briefing, to learn about the need for greater biomedical research, medical education and public awareness for ME

In the tool you can enter your postcode which will draft up a letter to your local MP you do get the option to personalise the letter before you send it.

Once your letter has gone please send this to every single person that your know.

Together we can make a difference x 

Picture of Alisha

Alisha

Proud Wife, Mother and Nanna . We married 19 years ago in Rome, Italy surrounded by our friends and family. We have the most beautiful, caring, considerate daughter, she makes us proud every single day. I am nan to Alfie, our Black Labrador and he is my best friend in all the world, I love how he understands that just laying next to me is all I need on a bad day and on a good day well it is cuddles and kisses galore. Liverpool born & bred, I never had enough guts to ever move away. Maybe it’s on my cards in the future. I have an illness that has destroyed my life, that illness has led me to blog my life with no filter. I put everything into raising awareness of Myalgic Encephalomyelitis and I would do anything to make sure no one else has to feel the way that I do. We have fun in our little home and I do anything to make my family happy. Love meeting new people over the web and hearing their stories. I Love making new friends and just trying to make a difference in this world.
Facebook X-twitter Youtube Instagram Tiktok Pinterest
Click to shop my Amazon Storefront
A Disney-style cartoon illustration of a dark-haired woman with blue eyes sitting on a bed, writing in a notebook. She is surrounded by a laptop, scattered notes, and a microphone. Two black Labradors, one with a red collar, sit beside her, while a camera records the scene
Visit my YouTube Channel

more blog posts

A futuristic, AI-powered electric wheelchair with a sleek design, digital interface, and robotic assistance, positioned in a modern, well-lit indoor space with glass ceilings

The Rise of Robotic Wheelchairs: Revolutionizing Accessibility and Affordability

Robotic wheelchairs represent hope and possibility for those of us living with mobility challenges. But for these devices to truly revolutionize accessibility, we need to address the affordability gap.
read more
Matthew Street Festival is a music festival held over August Bank Holiday in Liverpool. Originally this festival was set up to honour the music of The Beatles and was held in Matthew Street. Now the event is held at The Pier Head. This Image features The Beatles Statue of all 4 Beatles and it can be found at The Pier Head

The Mathew Street Festival

Liverpool, a city synonymous with music, culture, and history, is home to one of the most iconic events that celebrates its rich musical heritage – the Mathew Street Festival. This annual (fingers crossed )event, deeply rooted in the city’s identity, has grown over the years to become a symbol of Liverpool’s enduring love for music and its vibrant cultural scene.
read more
A before-and-after comparison of a workspace showing the impact of a cable management kit. The “Before” side has tangled and messy cables, while the “After” side displays a neat and organised setup with cables secured.

The Ultimate Guide to Cable Management: Keep Your Home Pet-Safe & Clutter-Free

Struggling with messy cables? Learn how to organise your wires and prevent pets from chewing them with these simple and effective cable management solutions!
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).

Get Updates In Your Inbox !

Sign up with email to receive news & updates.

Menu

Latest Blogs

Important

Scroll to Top