Spoonie Squad are giving Liverpool a voice this 12th May.

/ Myalgic Encephalomyelitis / By

Good Afternoon Spoonies x

Big news that needs all of your help and support.

You may of heard of the #Millionsmissing campaign started by ME Action https://www.meaction.net/

The campaign has been supported worldwide and people like us have set up and run protests to tell our stories , as well as showing people the severity of ME in a way they may not have known.

I will be honest Liverpool not having any sort of protest or presence in this worldwide campaign bothers me a lot. Every single day we fight for acceptance , we fight against pain , we fight against ignorance from friends u, family and the medical profession.

So this May 12th Liverpool will be standing side by side with ME Sufferers the world over.

I want to change people opinions in Liverpool , I want every single one of you to be able to speak to someone and when they ask what is wrong you will be able to say ME and they understand.
I want medical professionals in our home city to see how desperate we are and to assist them in pushing for medical advances and transparency.
I want our council leaders to see our Spoonie Squad and for them to finally understand that they can not just brush us aside .

Our lives should matter to every single person that we know .

Our nightmares have to end now and I need your help to make it happen.
I need your friends and family to get involved by standing with us.
Liverpool it is our year x

I can not do this alone .

So I ask each and every one of you , Are you with me ?

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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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