ME Awareness week

Press Release
3/5/2018
I have Severe ME which has me completely bedridden for 95% of the time .
I am totally reliant on my Husband, 17 year old daughter and a wonderful lady named Debbie to care for me .

My body may be completely useless but my mind is still firing on all cylinders.

I want to make a difference, more than that I know I can make a difference but I need your help.

When I was first diagnosed with ME I went through a really dark time . My friends & family carried on living their lives , lonely & lost I started making friends over the internet who helped me understand this illness and help with the loneliness.
The more people I met the more apparent it was that every single one of us no matter where we lived ,had all been let down by our health systems.
We all had one thing in common feelings of loneliness , confusion and an absence of hope.
Friends & families didn’t understand our illness and what it was doing to destroy our lives . They just went on living their lives and because let’s be truthful there is only so many times they can agree to rain check on your pre made plans .

ME is so misunderstood and it frustrates people if you don’t take their advice to just put on your make up and you will feel better or once you get out of bed you will be ok. This leaves ME Sufferers feeling like they are talking but no one is really listening.
So divisions happen and ME Sufferers go one way and your friends & families go on living their lives .
Meanwhile ME Sufferers speak to Drs , consultants . We end up in A&E as we can’t manage our pain . Our lives ultimately become trapped in 4 walls .

We need funding, research and the media to help share our stories.

I was determined that if I had this god awful illness that I had to do something to help others .
So I set up a FB page to introduce ME Sufferers to other Sufferers who understood how each other feel .
I get involved in raising as much money & awareness as I can , well as much as my body allows.

I launched ME Pyjama Party for ME Awareness Week which is the 12th May onwards .

It is the only event in the whole ME calendar worldwide that every single ME Sufferer can join in with .
All you have to do is take a picture of yourself in your PJs and post it to our social media boards .
If you want to you can also set up a just giving page and ask for sponsorship.
My dream is that #MEPJParty will trend one day .
Imagine looking on Instagram or twitter and seeing thousands of ME Sufferers, a person not just a statistic.
I launched my own website where I blog how I feel , it’s a great way to help me make some sense of it all.
In the future my blog will be a vlog , now that’s scary but exciting at the same time.
This ME Awareness week is going to be crazy.
I am so proud to be able to say that I helped organise the MIllions Missing Liverpool action days.
The first day is for ME Sufferers to come out in support of ME Awareness and to try to send a message to our health professionals.
We shouldn’t be trying to treat this illness as best practice in one part of the UK and then treat it in a way which is proven to make our symptoms worse in another.
On Saturday 12th May you will be able to find us on Church St , Liverpool. We will be between the TKMaxx and Primark from 11:30 till 14:00.
Our action will mirror actions happening all over the world and at 12 noon we will join hands in solidarity with our ME brothers and sisters.
Our second day of action will be Monday 14th May at St George’s Hall, Liverpool . Our focus for the day will be sharing our stories.
I have been collecting and appealing for shoes to be sent to me , I will then write the story on a large luggage tag and attach it to the shoes for the world to read. We will also be displaying our posters and banners to really reach out and speak to people.
Both days we will have one of our sufferers taking photographs to share over social media , not to mention my attempt at live streaming .
Sufferers and their families can also get involved in The ME PJ Party.
This year I wanted to change things up a little so I got in touch with as many ME charities as I could to ask them to send me a TShirt or something I could wear on their behalf this ME Awareness week.

Severe ME Sufferers like myself don’t get out much so our wardrobes are full of pyjamas , so as a bit of a giggle I thought I could do an outfit of the day ME Edition .

Each day I will wear a new pair of pyjamas and take some photographs, I will then put my ME Charity T-shirt over and take a few more photographs, the photographs will then be posted to social media giving the ME Charity exposure and of course my pyjamas . In the description I will mention the ME Charity and were the pyjamas can be purchased .

All of these ideas don’t carry enough weight without sharing and that’s how you can help.

I know that by working together we can raise the awareness needed to make a difference.

Together we are stronger.

Kind regards,

Alisha Whittam

For more information about ME please go to
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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.
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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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