Hachet Woman – Hilary Johnson is doing what she does so well-she’s taking heads. She’s never been about ‘support’, she was an investigative journalist after all. Her metier has always been holding up a bogeyman and then cutting it’s head off.
Born with a golden pen her darting, evocative and often voluptuous prose engulfed a community that raged at the pitiful federal response. Osler’s Web was a tour de force of investigative reporting, a remarkable achievement for anyone, let alone someone with a severe case of ME/CFS. Yes, she had her white hats and her black hats, the good guys and the bad guys even back then; there was never anything subtle about her world view but she told a great story and it fit with many peoples experiences.
Real Speak. And she’s still swinging her hatchet. But is she swinging it too freely? Has she lost her head? I would suggest that anyone who calls the CFID’s Association the ‘Bechtel’ of CFS and suggests that they are contributing to a ‘pogrom’ of the ME/CFS community has gone over the bend. There’s a difference between constructive criticism and an almost hysterical attack. Despite her declaration that it was time for ‘Real Speak’ Hilary Johnson’s recent blog reeked of the later.
In a remarkably ugly statement she stated that it makes her ‘skin crawl’ to think of Kim McCleary representing ME/CFS patients before Congress. Alot of things make my skin crawl but this is not one of them. Kim McCleary is married to a man whose mother has had ME/CFS for over 20 years. I’ve watched Kim McCleary choke up in the middle of a conversation over the frustration at her inability to change the status quo at the CDC. I’ve seen her, overwhelmed with emotion, have to pause in the middle of her sentence as she testified before Congress. I read her cutting testimony as she took the federal government to task before that ‘little committee’.
The Enablers: Who are her fellow CDC enablers? Who regularly sits down with her to plan their next ME/CFS ‘pogrom’? Check out some of the ME/CFS Nazi’s who make up the board of the CFIDS Association of America.
- Jennifer Spotila – former attorney, disabled, ME/CFS for 15 years
- Katrina Berne, author Of ‘Running on Empty, ME/CFS for 15 years, disabled for eight years
- Amy Divine – ME/CFS for 23 years
- Lynn Royster – mother of a son with ME/CFS for over 20 years
- Brian Smith – ME/CFS for 14 years
- Amy Squires – sister with ME/CFS
- Patrick Venetucci – family member with ME/CFS 10 year
- Adam Lesser – ME/CFS for 6 years
- Bruce Allhouse – daughter with ME/CFS
Somehow I don’t think these people are interested in eviscerating the ME/CFS community. But maybe Kim has managed to collect a group of CDC groupies. What did they have to say recently about our most infamous CFS research program?
Jennie Spotila (CFID’s Association Board Member)
“if CDC does not address it’s systemic problems …then the five year program will not be worth the paper it’s written on ..the CFS program is falling behind and failing in its mission. Until the program is reinvigorated by accountability and purpose you will be a barrier to success instead of being part of it’.
Dr. Katrina Berne (CFID’s Association Board Member)
In her testimony, Dr. Katrina Berne called the calling the CDC’s spending practices ‘wanton’, their lack of progress ‘dismal’, stated that they do not take the disease ‘seriously’ and called their approach ‘slipshod’. She ended up stating that ‘she has little to be optimistic about’ the next five years given their past performance. As someone who’s been ill for 25 years she’s deeply angered by the agencies lack of progress stating that “The history of the CDC in regard to CFS has been dismal’.
I cannot imagine that any of them – many of whom have had this disease for decades – would sit next to, let alone work with someone they considered a stooge of the government.
The CFID’s Association and Kim McCleary, of course, after months of research broke the news of the CDC’s financial mismanagement and lead the way in calling for the program to be moved and new leadership. When the CDC refused to alter their treatment toolkit the CFID’s Association backed out of the provider education program and came up with a new one put together by ME/CFS physicians. When The Headhunter is on her prowl, through, such niceties carry little weight.
Berserker’s were a special subset of Norse warriors who as they went into battle had fits of rage so severe that they often ended up killing their own comrades. The best word I have to describe that portion of Hilary’s post is precisely that: berserk.