An Illness Misunderstood, Misrepresented & Maligned - ME

 

Myalgic Encephalomyelitis - An illness Misunderstood, Misrepresented & Maligned

The “Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC)” advocates for removing fatigue as a characteristic symptom and defines the disorder as an acquired neurological disease with complex global dysfunctions.

The ME-ICC defines specific symptom requirements: post-exertional neuroimmune exhaustion (PENE), neurological impairments, immune, gastrointestinal, and genitourinary impairments, and energy metabolism impairments.

There is a concern that the real symptoms of ME (mild to profound) as defined by the ICC are being covered up under the term fatigue and ignored.

ME is not fatigue, fatigue is just one of many, many symptoms and probably not even everyone’s worst one.

People in the ME community have different severities of ME- Mild, Moderate, Severe, Very Severe, Profound. No matter what the degree of severity most patients do not describe themselves as fatigued or relate to ‘fatigue’ as their primary symptom.

“Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME.

Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.”

~ International Consensus Criteria (ICC) 2011

Myalgic Encephalomyelitis (ME) can be illustrated with very damaging inaccuracies because of the misunderstanding that ME is just about fatigue, which impacts on public understanding, medical recognition, and research into ME.

Too often the words and images in the press, media and social media reinforce representation of fatigue and misrepresentation of the actual reality of living with ME.

When media and press get it wrong, they can cause harm.

The press in particular need to be aware of the potential impact of harms done by inappropriate portrayal of people with ME, the portrayal of tired people through inappropriate language and images that misrepresent the lived experience of those with ME, especially those with Severe/Very Severe/Profound ME, which has the power to hinder knowledge and understanding in ways that impact on clinical guidance, research funding and support for ME.

What happens when the severity and complexity of ME are trivialised by misrepresentation:-

- Government and health agencies see no reason to provide important support services

- Government and health agencies see no reason to prioritise policy making and appropriate guideline publication

- Medics have no reason to seek education

- The general public have no reason to understand and support people with ME

- The care and treatment end up in the wrong hands i.e. psych

- People with ME are ignored, disbelieved, and disrespected

- People with ME remain neglected, abused, and marginalised.

All of this has perpetuated the notion of there being false illness belief and deconditioning. It has helped maintain and perpetuated the influence of the psych cabal.

Emphasis should equally be placed on the importance of language choice. Language most often directs the choice of images used.

Associating the word 'fatigue' with ME, using it in diagnostic criteria, using it in the conversations between medic and patient all undermines recognition of the severity of ME and the unique characteristics of post-exertional neuroimmune exhaustion (PENE).

All of this has

- marginalised research based on pathophysiology

- led to acceptance of harmful treatment recommendations (GET & CBT)

- fuelled standards and ideals that support abuse of people with ME.

Let’s take a close look at Severe and Very Severe ME via a set of educational films from 'Dialogues For a Neglected Illness' (Natalie Boulton), and evidence that faultless knowledge via language - spoken, written, and pictorial - as well as compassion and understanding needs to be visible.

Please see films via link

" Persisting using the word "fatigue", which is not a very useful symptom to try to single out any particular illness, because which illness does not have
fatigue associated with it?, is holding back research into the physical cause of ME by bundling different illnesses together, confounding variables and  diluting the reliability of the findings for ME sufferers."