Stop the ME Cover up!
Severe ME Day is upon us again. This is a relatively new event following its launch last year under the banner of Severe ME Understanding and Remembrance Day 2013 which focused on those who had sadly lost their battle to this dreadful disease.
Many people received this day of remembering the severely affected sufferer with open arms, and some other ME organizations advertised it by highlighting it within their own publications and websites to help raise awareness.
This year the “ME Cover Up ” is highlighted.
For this “Cover Up” day, patients have been asked, if possible, to send in photos of themselves covered by a sheet and holding up an awareness slogan. Below is one of many received:
Through this, patients and advocates want to show that many sufferers feel they are invisible to the outside world and believe that ME is not taken seriously.
We also want to make the point that sufferers really want and need so desperately to be “seen, heard and recognized” and to show that patients refuse to be ignored or to be invisible to the world. They may not be able to present themselves to the world because of severe ill health but they want to be listened to and heard by the appropriate governmental authorities.
ME patients also need and want to receive healthcare services, and appropriate recognition from the medical community as a whole as bona fide physically ill patients. Also, they and advocates would like to see more desperately-needed biomedical research undertaken (most important!).
The medical profession and the general public need to understand the seriousness of the illness, myalgic encephalomyelitis, and remember that underneath the sheet there is still a human being.
Some ways in which ME is covered up:
- By using the term “CFS” instead of the WHO (World Health Organization) acknowledged disease named myalgic encephalomyelitis;
- By using the composite term CFS/ME to mean anything other than ME;
- By equating ME to Psychiatric Chronic Fatigue intentionally and wrongly;
- By using the term ME to mean a fatigue condition, not the neurological disease that it is;
- By believing that ME is primarily caused by wrong thought and deconditioning (not enough exercise);
- By inadequately testing for ME dysfunctions and underlying causes;
- By psychiatry successfully promoting ME as simply fatigue and psychosis and depression to create prejudice;
- By not providing a suitable medical health care pathway for ME;
- By portraying the illness as less severe than it is;
- By not meeting the needs of the most severely affected, so they become invisible;
- and many, many others.
All these things help to cover the truth of this serious neurological disease and help to continue to make patients invisible so as not to be able to receive healthcare, social services care and they are “swept under the rug” from society in general.
[images and slogans from 25% ME Groupdotorg]