News

A A A Text size

What should the world #LearnFromME?

April 04, 2022

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.

At Action for M.E., we are working with the ME Association, #MEAction Scotland and the 25% ME Group to ensure more doctors in Scotland better understand M.E.

With funding from Scottish Government’s Neurological Framework, we are promoting a free online learning module on the diagnosis and management of M.E. to GPs, medical students and allied health professionals, complemented by our Learn about M.E. podcast series. We have also produced a template letter that people with M.E. can use to encourage their GP, therapist or other health professional to take the learning module which, along with the podcast series, is now available FREE for any health professional in the UK.

Our CPD modules have been developed by Dr Nina Muirhead in partnership with the UK CFS/M.E. Research Collaborative (CMRC). The module is based on around 10 clinical case studies, which aim to typify patients who may or may not display signs and symptoms of M.E., and reflects emerging biomedical evidence, evolving international discussions and the patient perspective. 76% of professionals who completed the module believed they felt more confident in diagnosing M.E./CFS and 96% of professionals completing the module felt that more formal education and training on M.E./CFS was needed. Our Learn about M.E. podcast supports learning from the module, featuring insight and experience people with M.E. and clinical professionals.

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.

In the United Kingdom we have launched Breakthrough-ME: our plan to rapidly grow research and funding. Our goal is to achieve a breakthrough in M.E. research that will provide the scientific knowledge required to deliver the diagnostics, treatments and eventually cures that we so desperately need.

What can you do?

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

Find out more about what other organisations are doing around the world at worldmeday.org