Bloggeren CFS Patient Advocate har vært tilstede under årets Invest In ME konferanse 2012. Han er pappa til sin ME syke datter og blogger for bevissthet om sykdommen ME. Han starter sitt blogginnlegg «InvestinME roundtable discussion – May 30-31, 2012» med å fortelle om personene som står bak Invest In ME konferansen. Som han sier: «What these two individuals have accomplished in seven years is truly astonishing. How these two individuals have been able to bring this to fruition is beyond comprehension. I cannot see how they are able to do what they do. Clearly, it is a labor of love – and year-by-year, it is bearing fruit.» I bloggposten siterer han en hendelse og minnemarkering som sårt griper våre hjerter….
«The pre-conference dinner this year was attended by about 40 invited guests.
In a very moving moment, a candle was lit in memory of a 19-year-old Norwegian woman with ME/CFS, who had recently died in her sleep.
Following the candle lighting, Norwegian journalist Jorgen Jelstad gave a quietly firm and inspiring talk about the importance of words in describing, depicting or characterizing this illness – «Words Matter».
Hopefully, copies of this speech will be available to others.
His talk had the great theme of optimism to it. Jorgen has written a book in Norwegian on ME/CFS entitled “De Bortgjemte” (The Hidden Ones).»
Han avslutter bloggposten med disse ordene:
«But we cannot forget the voices that guide us, guide us emotionally through this torn landscape, delivering inspiration, direction and, most importantly, the history of this very serious illness. Great thanks needs to be given for these voices.»
Oppe på himmelen blinker en stjerne,
langt borte i det fjerne,
med ønske om kjærlighet og fred.
Sender den sin hilsen
til liten og stor
Måtte livets engel gå foran deg