@Neilk,
@dancingstarheart, I get the feeling that you are angry because your petition hasn't had a response yet, whereas other communications have been responded to. But I don't think you should expect such a quick response to a petition.
No - we are not upset that we didn’t get a reply yet. As we stated, we are angry about the type of communication selected by a US government health agency, but understand this is a learning process for some officials who apparently were not familiar with our disease or the thirty years of neglect and disdain that their institution has perpetrated, which actually proves how neglectful NIH has been. Everyone knows about AIDs and Act-Up, but claims not to know about the abused ME community. That is perplexing.
With regards to their communications in general, we've been told repeatedly that the information we require will be published shortly, so I'm not sure why we should be angry about the communications. Personally, I'm more than happy for informal lines of communication to be open, both ways, between our community and the NIH, as long as there is ultimately a degree of transparency.
As we have stated in our blog and in our petition, this was an urgent matter. Dr. Nath was presenting about the study at the CDC Grand Rounds to “thousands” of medical professionals. Dissemination of wrong information, like the Reeves criteria would have been harmful to the entire ME community. The website page that had shown the protocol information went dark with no replacement. If that information was inadvertently posted, as they later claimed, it should have been immediately exchanged with the correct protocol. It would have avoided a lot of distress and misunderstanding. Instead, little bit of pieces of information were being leaked around, with no official addressing what Nath was going to present at the Grand Rounds.
I understand that you personally don’t mind this type of communication but, many US patients do mind and are confused and enraged.
I understand why the community is angry about things in general, taking into account the historic context, but the anger surrounding this project is bewildering to me. I think there may be lots of misinformation perpetuated by our community that is confusing people. I've seen bizarre things being said about the project and plenty of unhelpful and confused speculation. And now there have been bizarre complaints that the NIH is communicating with patients and that the NIH study is a fishing expedition.
Your statement that things you are hearing are bizarre, is subjective to you and I am not sure exactly what you are referring to. The protocol as posted on the website was very flawed. A study with a flawed design is much worse than no study at all.
I wonder if most people had read about the background to the project, and it would have been nice to see ME Advocacy helping the community to understand what information was available. i.e. to inform people that the patients are to be selected using the CCC, and selected by the expert physicians that Dr Unger is using in her project. And that the study will investigate immune and neurological abnormalities. This might have helped avoid unnecessary anger and stress.
The ever-changing background of the project was not available to the public, just to those following certain advocates. The information that you are stating above was not available until Dr. Nath’s presentation yesterday. Therefore, your comment is a misrepresentation of the timeline of what actually happened. For example, the last indirect, unofficial communication from NIH was that Reeves was still included.
The thing I'm most angry about is the ME Advocacy petition, which I've kept quiet about until now.
I find it ironic that ME Advocacy is called ME Advocacy when they are advocating exactly the opposite of what I believe are in my interests (i.e. in the interests of ME patients). They've created a a petition to shut down the most promising study in the history of ME, and they're rebutting the apparent renewal of good-will and renewal of relations from the NIH. And now there's an attempt to shut down friendly communication channels between the NIH and the patient community.
I respect the fact that your opinion is against the petition. Again, you are misrepresenting the true information. MEadvocacy called for the study to be cancelled as is and to replace it with an appropriate study. MEadvocacy prioritizes the needs and plight of severely ill patients above compromising with government officials that may be uncomfortable making the best high quality decisions for a severely sick and dying patient population. We have been an abused group way too long. If we are going to finally have an intramural study at NIH, we expect it to be a robust study of the patients who actually suffer from myalgic encephalomyelitis, not the umbrella syndrome of fatigue.
I
t's one thing to do constructive criticism, or to protest with a specific goal in mind, but this seems like an attempt to say no to everything: to destroy community relations with the NIH and to destroy research. Not in my name, thanks. ME Advocacy do not represent me or my interests.
There was a specific goal in mind and it was stated in the petition. Again, it is your misunderstanding that we are destroying research - we are destroying any chance of bad research. We hope that those designing and approving the study protocol will continue to listen to the community's feedback. We realize that the study is a collaborative effort at NIH. The petition may very well give those in NIH trying to make change for the better, more leverage against the remaining biased researchers.
