Educate GPs, Emergency Docs, and Neurologists on Myalgic Encephalomyelitis

Doctors need to be educated on ME, as well as a lot of complex chronic health issues. Most doctors I have seen don't know anything about ME, and when I've been assessed for other neuro conditions they have also often gotten information about those wrong. And doctors need to stop telling patients with illnesses like ME that we should be "glad" we don't have other, more easily diagnosed disabilities, when all of those disabilities are bad and so is ME. ME patients need doctors who know about ME, who are willing to try experimental treatments, and i  some cases referrals for palliative care.

Why the contribution is important

ME patients currently get treated horribly by the health care system.

by sammyp on April 07, 2023 at 01:45PM

Current Rating

Average rating: 5.0
Based on: 6 votes


  • Posted by vision4ME April 11, 2023 at 16:15

    Sammyp is correct in pointing out many health professionals' lack of knowledge about ME/CFS, notably about how extremely severely affected some patients are and that palliative care in some cases is the most appropriate treatment.

    Sammyp's contribution brings to mind the following joke, of the black humour variety.

         "Doctor to patient: I have worked out what is ailing you and I have good news and bad news.
          Patient: Yeeesss...?
          Doctor: You have Myalgic Encephalomyelitis. The good news is it probably won't kill you.
          Patient: And the bad news?
          Doctor: The bad news is it probably won't kill you."

    Note the word 'probably' in "it probably won't kill you". Few doctors realise that in rare cases ME/CFS can and does kill. More often the very severe patients linger in a state of near-death for many years and the NZ health system does not know what to do with them. For these patients a clear pathway to good palliative care by providers well-informed about ME/CFS is a priority.

    Most patients are less severely affected and have different needs. However, those needs are rarely recognised by health professionals either. The most important need to recognise is the need to minimise post-exertional malaise (PEM) in patients with ME/CFS and also in many with Long Covid. Few health professionals are currently capable of recognising PEM or even of understanding how it occurs and why it is important to minimise (hint: it causes avoidable suffering and can lead to permanently increased disability).

    Improved medical education on all levels of ME/CFS severity is urgently needed. My 'idea' titled "National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses" outlines how this could be achieved in tandem with improving medical care.
  • Posted by Drum5656 April 13, 2023 at 14:25

    I support the call for better education of all health professionals in ME, Long Covid and other chronic illnesses.
  • Posted by larisahockey April 24, 2023 at 09:27

    Agreed. In the absence of diagnostic tests for ME/CFS doctors use the biopsychosocial inappropriately to diagnose patients with mental health disorders, instead of supporting their mental health needs alongside their biological symptoms.

    With the advent of Long Covid doctors need to be upskilled in recognizing post viral conditions and how to support patients, even when there are no established treatments. They need to be aware of NICE and WHO guidelines which condemn the use of graded exercise therapy (GET).

    ME/CFS is debilitating ahd has been poorly understood for too long but there is a lot of research coming out now that doctors need to be aware of to avoid making the mistakes of the past.
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