Today's a ground-breaking one.

Stonebird ...getting ready to soar today
No one, in seventeen years of almost total isolation,  has had the wit, the intelligence or the courage to try and include us in their conferences.

Typically  the international  ME biomedical conference circuit,  revolves around  the same skimpy smattering of medical professionals. Given that no one, to my knowledge, is researching the most severely affected, that , alongside the lack of  any significant patient/carer involvement on the circuit, is a whopping void.

 Has it occurred to anyone that we carers and patients might  have something of stupendous value to share ; a few facts about how to live with and cope with this abominable illness, not just survive but actually make things happen ? That we comprehend better than any number of medical professionals , who do not visit the homes of those who have very severe ME, what the sickness is actually like and what works and what doesn't ?

No longer. Today history's going to be made.

The Academy of Nutritional Medicine (AONM) are the ground-breakers. Today, at their conference in Central London, I will be presenting on Very Severe ME. My session entitled Speak Your Truth , will be delivered entirely from the clouds. This is the 21st century after all; the technology is readily accessible, to a carer like me, who cannot possibly leave the house and travel .

It's not just me presenting remotely. There is another video session too. The AONM are visionaries.

Excited ? I feel like Robinson Crusoe this morning, on my desert island, with a sail drawing close  . So much things to say, as Bob Marley sings so powerfully.

I am thrilled on many levels ; students are going to be there today, what an opportunity to show them a slice of what it's like . No one could possibly have a clue.

Training and Development runs in my blood; I gave up my own Training Company to care full-time for my wife. How wonderful to exercise those refined skills again. It's not only Doctors and Consultants who are the educated ones you know,  , hell in all these  years I have been caring,  I've gained Counselling and  Web Design qualifications, an MA , published two peer reviewed articles on ME and  two spiritual books on suffering.

It's been such hard work putting the presentation together. The cost has not been easy. Will it work ? Today will tell. Nervous ? Absolutely - for I am not just going to present,  I am going to attempt to lead a live interactive session; getting folk talking to each other; they will see me and I will see them and we will converse.   How often do you get that level of sharing  at an ME Conference ?

And all from my bedroom.


  1. How wonderful. My heart is with you, Greg.


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