"I am disappointed in Sarah Shenk. It is discouraging to read rubbish like this from a respected charity like Hummingbird Foundation. It appears Shenk has gone out of her way to remain UN-informed about the Nevada cohort and other patients in the WPI study. The effect of her prejudice against the study is to jeer and denigrate the patients themselves. Shenk is colluding in 'us and them' defamation typical of abusive people anywhere. This offensive essay is beneath the dignity of the respected Hummingbird Foundation and does tarnish their good name and reputation.
The Incline Village outbreak was an ME outbreak - even minimal knowledge of the controversial history and events of that period, and the CDC's mishandling of the outbreak, shows that doctors well-informed about ME, Dr. Hyde and colleagues, had diagnosed the patients as having ME - and walked out of the experts' meeting at the CDC in disgust at CDC manipulation of events and plans to derisively name the outbreak as 'CFS' instead of ME. The result of CDC manipulation was that no patients in the US and few in Canada have been diagnosed with ME since that time - North American doctors simply do no use that diagnosis, and instead follow the directives of the malicious CDC and diagnose ME patients with 'CFS'.
However, it slanders and betrays patients all over North America to pretend that very sick patients don't have ME just because their dianosis is called 'CFS' instead. It's not the patients' fault that the CDC travesty of misnaming this disease in North America has persisted for so long.
Moreover, the WPI study cohort included patients from many countries - when the study results were unblinded in December (see video of Mikovits lecture in January for her report of this data), Mikovits found that there were patients from all over North America as well as Australia, UK, Ireland, Germany and elsewhere in their published Science study. These were patients who had travelled across their country or across the world to see the handful of ME-CFS doctors in North America who are experts in this disease (the real disease, not the 'Oxford' definition travesty), and have been treating patients for years. Anyone claiming to represent a respected ME charity should have done their homework and known this.
Or does Shenk suppose that no ME patients exist in North America? Or that no patients have developed ME since the late 1980s when the CDC took it's fateful turn into 'CFS' politics? Does Shenk suppose ME exists only in Commonwealth countries that she and her mates approve of, those that still have doctors who use the ME diagnosis?
This essay is appalling. Shame on Shenk and the once-noble Hummingbird Foundation for releasing it."