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What should the world #LearnFromME?

ME is a global health crisis – up to 30 million people are living with this disease worldwide, and when we take into account the effect on families, carers and friends too, the impact of this disease cannot be overstated.

But there is much to be learnt from this disease – from the willpower and determination of those living with it, to the incredible advocates working towards change, to an understanding that the most meaningful change will comes from high-quality research.

We want to use World ME Day to reach out to health professionals on a personal basis, build understanding of ME and take another step towards a world that understands ME.

Key facts for health professionals

  • People with ME have a lower average quality of life than all other diseases they have been compared to, including diabetes, cancers and heart disease.
  • You can provide support – while you may not be able to cure this disease, that doesn’t mean you can’t do anything. You can accurately diagnose people; you can help manage symptoms; you can provide advice on pacing energy levels; you can ensure people have access to your countries social support systems; and much more.
  • COVID-19 is causing a spike in new cases of ME.

There are now two high quality guidelines giving the information health professionals need to provide the best possible care. You can read the National Institute for Health and Care Excellence guideline from the UK here, and the Mayo Clinic Proceeding guidance here.

The Mayo Clinic Proceedings guidance lays out four clear steps a health professional should take to support someone with ME. We believe every health professional should know these.

Infographic with text:
Dear health professionals, will you #LearnFromME?
4 steps support a person with ME
1. Validate the patient's experience
2. Assess needs and support
3. Teach pacing
4. Treat symptoms

Mayo Clinic Proceedings - ME/CFS Essentials of Diagnosis and Management

World ME Day

At the World ME Alliance, we are preparing a series of actions you can take around World ME Day, and will be using our network to promote the impressive work of all our member organisations.

The biggest changes will come with research

While we can do a significant amount to support people with ME at present, we still don’t have a universally effective treatment or cure. Without this, the global ME crisis continues.

We need governments and pharmaceutical companies to greatly increase their investment in ME research. Our members are pushing for this across the globe – from US Senate bills, to South African research looking at Long Covid and ME, to New Zealand boosting press coverage of ME and research in their country.

What can you do?

Next week we will be releasing the first action you can take to help make and impact on World ME Day, and there will be more actions in the run up to May 12th. We are excited to help facilitate these alongside organisations from across the globe.

Find out more about what our member organisations are doing around the world at

This Post Has 2 Comments

  1. Margaret Schumacher

    I am 90 years old and have had CFS for 24 years. I would like a researcher to know that when I was in the hospital and on total parenteral nutrition (TPN) for a month, my CFS symptoms disappeared. As soon as they took me off of it, my symptoms returned.

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