These are interesting times. Scary. Hopeful. Stressful. Desperate.
Patients with ME have gone through the wringer since October 9th 2009 when the Science paper came out. From intense highs to the pits of the lows, when negative papers came out, intense fear, and panic set in.
See, some patients have been ill for decades. They have been left for dead. They have been insulted, ignored and marginalized.
For healthy people, it's hard to believe that someone can be this sick and yet get a good bill of health from their doctors office- Their GP have not learnt in school what ME/CFS is. All they know is, the blood pressure is good, the heart rate is regular, the patient is not blue, the CBC (complete blood count) is normal, must not be that bad huh?
Then comes the governments, whose strings are likely pulled by insurance companies. Why research a condition that seemingly has no biomarkers? Even the CDC says it's a psychiatric illness.
Patients, who have obviously lots of time on their hands, being housebound, bedbound, roam the internet, look up their disease, and what scientists do about it. The miracles of communication makes it that you can interact with scientists online. You can invite (or lure) scientists to patients forums and then you can beat the crap out of them. It's happened just recently.
Just like what is going on in Egypt, patients want out of their bad situation. And desperation makes it that any behavior, however unacceptable in a face to face situation is now seemingly quite acceptable.
This is total chaos. Patient forums is not for the faint at heart. And why on earth would patient tell scientists what to do? The situation is extremely complicated, the virus, should it be responsible for ME/CFS, is really hard to find, there is no funding, researchers are extremely reluctant to get into the field, the ones we already have are in retirement age. The more anarchy amongst patients, the least appealing it will be for incoming doctors and researchers.
It is hard to believe that patients are harming themselves doing what they are doing, but this is true. This is what's happening.
(I typed this while in relapse. Lots of headache and what we call brain fog, some call it dementia. I am sorry if this post doesn't make a lot of sense.)