THE AWFUL TRUTH ABOUT THE NAME “ME”.

Think about this for a moment- how difficult do you think it might be to maintain any kind of hope, if you were seriously physically ill, with multi- system dysfunction, for decades on end, yet you had no way of finding out what is going so fundamentally wrong, physiologically, in your body ?

How would it be if you were not taken seriously by main-stream medicine or even if you were, the answers were still not forthcoming?

What if your horrendous physical illness was consistently misinterpreted as just unexplained fatigue without any underlying pathology?

What if you were harmed, sometimes for years or forever, by any and every intervention tried, because the physiological insight pertinent to your illness,is missing, so it cannot be taken into account?

What if you were left to “just get on with it”, in the most intense, disabling, horrendous pain and agony, becoming more and more isolated and invisible?

What if it was safer for you to not engage with people than to risk the very real possibility of being permanently harmed?

What if doctors did not know the first thing about your disease?

What if no one knew how to help or alleviate even, your pain, let alone every other devastating symptom you have?

What if you knew that because of a campaign of misinformation and misinterpretation, the diagnosis " ME", no longer bears relevance to the disease from which it was derived?

What if you knew that wrong information about the illness you have been diagnosed with is being deliberately conveyed to health commissioners and widely promoted through the media?

What if the illness label you have been given is virtually useless, because its validity is open to interpretation?

How would you feel about that?

“ME”, today, is associated with a wide group of poorly diagnosed, ‘most -likely- to have -been - under-investigated -misinterpreted -and - mistreated’ patients, who have been denied full medical respect and adequate recognition of the depth of severity of their suffering.

Left without any coherent, genuine medical explanation, because of poor diagnosis and no specific reliable test, there is no effective treatment, no support or any safe way of identifying whether everyone given the label “ME” has the same disease or needs the same treatment.

Unbelievably, there is no unified agreement, concerning :

1. What ME actually is.
2. What causes ME.
3. Whether ME is a disease at all , with an identified pathology, or merely a chronic fatigue state without underlying pathological explanation.
4. What constitutes a safe treatment protocol for ME.
5. What the real and full list of ME symptoms are.
6. What is the underlying physiological explanation for the symptoms of ME.
7. What is the underlying pathology of ME.

Until you can actually say that THESE are the symptoms of ME and THESE are the causes of the symptoms, physiologically and THIS is the cause of the disease ME, everyone remains unsafe, uncertain and uninformed about what is wrong with them, so they have no safe way of making it right.

That is an incredibly cruel, profoundly bizarre and concerning situation to be in!

Our experience has been that once you are thrown into ME world, it is incredibly hard to get yourself out of it or to find the right help and advice within it.

Until ME is ring- fenced with a disease status that fully works - including pathology of disease and physiological explanation of symptoms, it is a terribly unsafe and unwelcome label to give anyone.

That, tragically, is the awful truth.

Greg Crowhurst December 2019