It's 2023, and
- there is still stigma associated with Myalgic Encephalomyelitis (ME);
- ME is still one of the great public health challenges of our times;
- ME is completely debilitating, wholly misunderstood, neglected and maligned;
- the evidence is that misdiagnosis and mismanagement in ME are propelled by lack of medical knowledge;
- the evidence is that misdiagnosis and mismanagement in ME are driven by multiple misconceptions.
It is important to recognise that, as well as experiencing debilitating symptoms and loss of income, career, educational and social opportunities, unsupportive attitudes amongst family, friends and medical professionals can add to the sense of isolation and underpin the harm, holding patients in a medical no man's land, leading to worsening of ME severity and even death.
There are many reasons why there remains stigma and a massive disconnect between ME patients and medical practitioners in particular....
....we highlight three, all of which are directly related and which result in an ongoing injustice being done to the ME community every single day, denying the patients access to healthcare equity, essential supports and some semblance of a life among their families and in their communities.
(i) In 2023 ME Patients are Frequently Given Various Inappropriate Diagnoses and Labels.
ME is regularly incorrectly labelled by primary and secondary care physicians and other healthcare staff as Deconditioning, Eating Disorder, Functional Neurological Disorder, Fabricated or Induced Illness, Medically Unexplained Symptoms, Psychiatric, Illness, Psychological Illness, Bodily Stress Disorder, Pervasive Refusal Syndrome, Perplexing Physical Symptoms, School Avoidance, Chronic Fatigue....and many more completely inappropriate labels, each leading to inappropriate therapies and denying patients timely and relevant management for Myalgic Encephalomyelitis (ME).
The reason why there are so many inappropriate names for ME relates to (ii) and (iii) which are also related to a whole bunch of other issues which have all led to the needless harm of ME patients....too many to mention here.
(ii) In 2023 many people who have ME are still being diagnosed with CFS or ME/CFS, (and others who want to psychologize ME call it CFS/ME).....and those are the illness names some patients hold close and use to refer to their illness, and we appreciate and respect that... however we feel that it is important to highlight the differences and explain why ME and CFS are NOT the same here
(iii) In 2023 the Case Definition Quagmire Surrounding ME Remains an Urgent Challenge....hard to believe but true. It's a long detailed piece we are sharing but if you have energy and time please have a quick glance through parts of it, link here
Comments re (i), (ii), and (iii)
The diagnostic criteria for ME is a key and polarizing issue, which threatens to impede much needed healthcare and community service improvements for ME patients. There is a strong case for there to be a further scientific reappraisal of the diagnostic criteria for ME including subgroup analysis, taking into account patient experience of the illness by engaging with patients from all severities across adult and paediatric ME, paying particular attention to the experiences of those with severe ME.
In order to achieve this, it is imperative that:
(i) patients, reps and advocates, patient groups, health agencies and policy makers, health professionals and researchers collaborate and work much more closely together;
(ii) including the patient voice is not just tokenistic, that there is equal engagement in the shared participation spaces in research and in criteria and guideline development, i.e., that ME patients and other relevant stakeholders are empowered to play a meaningful and active role in the criteria and policy development, that the process is about continuing to encourage and encounter plural views;
(iii) we develop effective mechanisms for bringing together researchers, clinicians and people with ME to drive forward the best healthcare, research and policy development agendas to lead to accord on diagnostic criteria usage; improved clinical practice, universal treatments and appropriate management;
(iv) following all of the above points we build a future where every doctor's surgery, hospital, health agency, community service, insurance provider, welfare agency and employer is enabled with accurate information that supports all ME patients.
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