• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Excellent "openDemocracy" ME Article

Old Bones

Senior Member
Messages
808
Nothing in this article will be new to most PR members. However, it is an excellent summary which accurately describes the impact of the illness, particularly for those most severely affected, and the political neglect.

"Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?
NAOMI WHITTINGHAM 19 December 2016

We need to draw attention not only to the illness itself, but the political neglect that allows it to continue destroying lives."

Read more at:

https://www.opendemocracy.net/naomi...26-years-on-why-is-it-still-poorly-understood

No Comments so far, but the website does provide this opportunity.
 

SamanthaJ

Senior Member
Messages
219
Brilliant article that deserves to be widely read. So many people don't even realise severe ME exists, as media coverage rarely acknowledges it, and you're not likely to just meet someone who's that ill. She explains both severe ME and the injustice so well, as well as explaining research in an accessible way. A good article to refer non-ME people to? Most people could not continue to be indifferent after reading this.
 
Messages
2,391
Location
UK
I just read this Telegraph article by Naomi from Aug 2014. It is not as if there is any excuse these days for the establishment to claim innocent ignorance; it is culpable ignorance.

http://www.telegraph.co.uk/women/womens-health/11018709/What-its-like-to-live-with-severe-ME.html

We all know there is a crime in the moral sense, but surely there must be crime in the legal sense too? If an ordinary person were to cause another such emotional and physical harm, due to incompetence, wanton mistreatment, character assassination, etc, then surely they would end up in prison. Let alone doing it to 100s of 1000s.
 

Daisymay

Senior Member
Messages
754
The technical term seems to be medical ineptitude, the deliberate ignorance of facts when they could have acted. Its an extremely widespread problem, and raises the question as to how much of medicine many doctors are also inept about? We trust these people with our health.


"Ineptitude is a lack of skill, ability, or competence. A doctor would prove his ineptitude at practicing medicine if he mistakenly removed a patient's spleen instead of his kidney. Ineptitude and incompetence are synonyms to describe people who have absolutely no idea what they're doing."
ineptitude - Dictionary Definition : Vocabulary.com
https://www.vocabulary.com/dictionary/ineptitude

Though with many doctors it may be ineptitude (which is itself completely unacceptable) as we all know there are those who are fully aware this is a serious physical disease but persist with their agenda that it is a MUS. That is not ineptitude.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
That is not ineptitude.
How we describe the core proponents of psychobabble may not apply to the wider medical audience. I think there are separate issues involved. Also I lost my reference to an academic definition of "medical ineptitude" which is not quite synonymous with ineptitude in medical matters, at least in the literature I looked at early this year or last year.

The issue is that huge numbers of doctors do NOT check the scientific credibility of what they support. They talk about evidence based medicine, but most who do that seem to be about looking up rubber stamped conclusions, and not looking at the evidence or scientific methodology, or lack thereof. When a doctor is aware, or has been told, that there is a problem and there is published scientific evidence this is real, it is an ethical, moral and scientific requirement that they establish if this is right. Sadly, its rare that this happens, but not unknown.

I am mindful of the history of peptic ulcers and H. pylori. It took many years for doctors to be aware of the science, and they largely picked that up from newspapers. It was patients who were demanding the newspapers run the story. I blogged about this.

H. pylori was ignored far longer than ME. FAR longer. The recent history of ulcers and H. pylori that began in 1983 or so was 108 years or so after it was first identified. Inconvenient research, or research that seems wild, or research published in obscure places, can easily be ignored or overlooked. This does give reasons for why doctors fail, particularly in the modern medical climate with almost no time allowed for proper skills development and personal research, but it does not absolve them of responsibility.