A CFS Homage to a Homager


Khaly Castle wrote an exquisite and a very powerful blog article, “Neverwhere – An Homage To Advocacy In The Trenches.” It is a must read.

With each of her blog articles the depth of her insights and caring compassion becomes ever more evident. Those in what she describes as the “Neverwhere” land of having CFS are fortunate to have her insightful and effective voice.It is amazing how humbling our feelings often become about our own encounters with the living hell of CFS when we see the so much greater depths of misery and loss experienced by many others. 

Grass roots advocates often feel profoundly inadequate because they can’t do more for those who reach out for help. There aren’t enough medical, financial, educational, or support resources available. What resource are available are woefully inadequate in meeting the scope of people’s needs.

So many inadequacies — I blame the government for that. I blame the much of the medical sector who for decades have been scientifically myopic about the illness. And I blame some amongst us who have fallen short on trusted effective advocacy representation over the past decades.

After having many phone conversations with people in need, or after sending off email replies to such people, the weight of feeling inadequate weighs on my shoulders — I want to be able to do so much more to levitate people out of their distress.

In an effort to express such sentiments I created this graphic.

This is a weight that the CFS advocate endures, always carries.

It may weigh heavy on the shoulders, but so too is it and the collected insights gathered along the way what drives the true CFS advocate to speak out on other’s behalf — it is the heart and soul of true advocacy.

True advocacy, being a true advocate, has nothing to do with individual’s or organization’s personal gains. It has nothing to do with empire building. It is all about helping, freeing, all the invisible CFS hostages.

I applaud all the advocates who have and will carry the true heart and soul CFS messages to the public and the halls of government. I applaud all the advocates who have tried to help others one person at a time.


And to all I say reach out into that invisible world and share your knowledge with others — we are all in this together.

© John Herd, ’10
May be reposted with prior permission
Feel free to send responses to me at johnherd@hmrv-advocacy.org


About johnherd

A free thinker
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