I challenge you …..

/ Myalgic Encephalomyelitis / By

Welcome to every single one of you and I thank you all so much for the positivity that you have left me in the last day x 

I can’t put into words how much it upsets me and drives me on . It upsets me because I wish that no one had to suffer with this awful illness but it makes me even more determined to make a difference.

In Liverpool I will be setting up a meeting where local ME sufferers and their families can come to meet up , make new friendships, talk openly about their circumstances and where we can discuss tips , hacks and anything else that will help us . 

So I challenge you to look to do it too. 

There is nothing stopping you from picking a quiet coffee shop or pub , community hall and promoting it on here .

Have a serious think about it , maybe discuss it with a fellow ME sufferer. Winter isn’t too far away for us and I know that SAD , feeling cut off and a million other things can exasperate our mood when the weather is bad and it hurts a little bit more . Just imagine if we could start a #spooniesquad in every single major town and city across the world.  Imagine feeling that you have 20 new friends who understand exactly how you feel . Imagine a phone tree where we could give a call if someone couldn’t make a meeting just to check they are ok and if they need anything.

We are being let down by our governments , health services , politicians and our own families , so its time we do something about it .

This website allows anyone with ME or carers for someone with ME to post meetings , give advice , share tips .

We can do this #spooniesquad .

Related Posts

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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