Irrespective of what people think of the scientific value and validity of the proposed intramural NIH study, Jeannette raises some very important points in her most recent blog post. There are serious legal aspects to Dr. Walitt’s terminology, for instance

“There are variations in the language, but the gist of the mental-health limitation in most LTD policies is the same: a termination of coverage for mental-health conditions after 24 months. Somatic Symptom Disorder as well as other somatoform disorders are listed in the DSM-V and regardless of whether they are expressly mentioned in a policy, any diagnosis of a somatoform disorder will, without a doubt, be classified as falling under the mental/nervous clause.”

Please do not be intimidated by silencing techniques and sustained ad hominem attacks on advocates who contribute with invaluable knowledge and insight to the field of ME. While we all are desperate for scientific studies and solid findings in the hopes of adequate treatment in the future, uncritical or overly optimistic acceptance of what is on offer is not the way forward if we also want sufferers to live in relative safety. Being stripped of all payments and benefits is not what I would want for anyone, but we need to understand that this is exactly what will happen if we choose to look the other way out of gratitude to the NIH for ‘something’ after so many years of total neglect. Jeannette gives of her considerable legal expertise to this cause, expertise that would be very expensive if we had to pay for it. I suggest we listen to her advice and act on it before it is too late. We all want to get better, we all want to collaborate, but we must pay attention to questions of sustainability for all of us. It is possible to produce sound science and take ethical responsibility for those who are supposed to benefit from such research.