Contact - Living with Myalgic Encephalomyelitis

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Contact Alisha

HELP IS AVAILABLE

Friends with ME is a support network of people with ME or “Friends with ME” It is a group where we can talk openly to people who understand how we feel. It’s also for carers and family members of people with ME who also need support. This group will very shortly be running support groups in Liverpool, I am aiming to have regular group meetings up and running in 2024. Most importantly between us, we can do anything.

FRIENDS WITH ME

Talk with ME is a page to share information about ME Talk with ME is here to support Our Family, Friends and Carers as we understand that this illness directly affects the people closest to us. Talk with ME is a safe place, we do not allow bullying or spam comments. Any member can send a message directly to me if they are uncomfortable and I will personally investigate before taking action.

TALK WITH ME

Myalgic Encephalomyelitis Carer Support is here to allow people who care for Myalgic Encephalomyelitis sufferers to talk privately. It is no secret that life with Myalgic Encephalomyelitis is extremely difficult yet the people who care for ME sufferers are often forgot about. Alisha wanted this page to be a place where the carers and families could talk privately, a place where we could ask each other for help and support or advice. This group is managed by Alishas Daughter who also works full time so if you do have any questions and you need help please message us and we will come back to you as soon as we are able to.

ME CARERS SUPPORT

What is Myalgic Encephalomyelitis

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/

What are the symptoms of Myalgic Encephalomyelitis ?

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

What is the treatment for Myalgic Encephalomyelitis ?

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.

What is Chronic Fatigue Syndrome ?

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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