Accessibility & Advocacy

Disability rights, accessibility reviews, support resources.

Rome

Accessibility & Advocacy, Life with Chronic Illness /

I want to cry as more than anything, I wanted to be travelling to Rome very soon. Before Covid we had made plans to return to Rome for the first time since our wedding. I had been in contact with the airline and send all of my wheelchair information and found a hotel that has

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Hope

Accessibility & Advocacy /

A life without hope. ******Advice***** If you live with someone with a Chronic illness of any type please don’t take away hope. We will experience good days and bad days but for us every day is difficult to get through. Being bedridden or having to change your life due to illness is more difficult than

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Updates

Accessibility & Advocacy /

Hi everyone, I just wanted to say Hi 👋. I am doing a few changes on my website at the moment , so please accept my apology that things are a little bit messy right now. Everything will be back to normal shortly x

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Parliament

Accessibility & Advocacy /

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

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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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